.jpg)
There is anti-inflammatory medication out there that has the potential to help people with rosacea, especially with the general redness and inflammation side of it. I will try to explain some more about the antimalarials mepacrine and plaquenil, and their potential role as rosacea treatment. I will also write about my own trials with both mepacrine and plaquenilDecember 2017 Plaquenil (Hydroxychloroquine) and mepacrine (mepacrine hydrochloride) are antimalarial drugs that are widely used and prescribed by immunologists, internists and dermatologists to treat the inflammation symptoms of the autoimmune diseases lupus, SLE and sometimes arthritis and rheumatoid arthritis. They seem to act as strong anti-inflammatories, but the drugs have several side effects (toxicity for the eyes with plaquenil for instance after prolonged use of high doses). In this blog entry I focus on public reviews and rapports from rosacea patients, and haven't included rapports from SLE, lupus and arthritis patients. There are countless studies of both meds helping with lupus symptoms, arthritis and SLE, and also with other inflammatory autoimmune diseases. I chose to focus only on its effects on rosacea symptoms, primarily flushing, burning and redness. Unfortunately there is little information available about this topic.
Mark wrote on November 21st, 2016: "So, I was diagnosed with neurogenic rosacea. I hate it, seriously. I’m only 37, had it since 30. It’s progressive and it’s damaged my social/ family/ life in many ways. I will not elaborate because it takes too long to type the details. 10 months ago I found a leading dermatologist at Palo Alto medical foundation, Dr. Murase, who felt confident and RX’ed me Hydroxychloroquine (plaquenil). I take 400mg/day split 200 mg bid. Look up the study on pubmed or google scholar to see if it might help you. Then ask your dermatologist. It has changed my life. Flair-ups reduced, burning almost gone, cooler skin. Swelling reduced significantly. It’s not totally gone, but there's such a huge difference. I never thought this was possible. I don’t see much written about it on these forums, or in the scientific literature, so I’m hoping it can help others too. Most significant is the reduction in the daily 2-4pm flushes for no apparent reason, or the flushing at the checkout line in the grocery store, or the flushes during sex, etc. I still need Mirvaso and sunscreen to survive, but this is so much better. Try it, I was hesitant after trying beta blockers, antibiotics, gabapentin, clonidine, metrogel, IPL, etc. Nothing worked like this. Good luck!"
Both Plaquenil and Mepacrine have incidentally been prescribed for rosacea, especially for flushing and to decrease erythema (skin redness)
Several dermatologists have used both medications experimentally for rosacea, although this is no textbook treatment. There is some anecdotal medical information available, and it appears that these antimalarials have been most frequently used by dermatologists in Scandinavia and north-western Europe. The medical articles that have been traced date from the 1960’s and both the antimalarial drugs mepacrine and plaquenil were discussed. A few of those articles:
Several dermatologists have used both medications experimentally for rosacea, although this is no textbook treatment. There is some anecdotal medical information available, and it appears that these antimalarials have been most frequently used by dermatologists in Scandinavia and north-western Europe. The medical articles that have been traced date from the 1960’s and both the antimalarial drugs mepacrine and plaquenil were discussed. A few of those articles:
Fredriksson T, Lodin A, Rosengren S.
[Treatment of discoid lupus erythematosus, polymorphous photodermatosis and rosacea with Triquin--a combination of 3 anti-malarials.] Sven Lakartidn. 1962 Oct 4;59:2858-62. Swedish. No abstract available. PMID: 1395940233:
Brodthagen H. Related Articles
Mepacrine and chloroquine in the treatment of rosacea.
Br J Dermatol. 1955 Dec;67(12):421-5. No abstract available.
PMID: 13284197 [PubMed - OLDMEDLINE for Pre1966]
Richter R, Tat L. Related Article
[Studies on the treatment of rosacea with resochin.]
Z Haut Geschlechtskr. 1955 Oct 1;19(7):211-5. German. No abstract available. PMID: 13282360 [PubMed - OLDMEDLINE for Pre1966]
Inman PM, Gordon B. Mepacrine in rosacea Article
Acta Derm Venereol. 1955;35(6):446-52. No abstract available.
PMID: 13301319 [PubMed - OLDMEDLINE for Pre1966]"
Journals@Ovid Full Text Lazaridou, E; Sotiriadis, D; Ioannides, D; Chrysomallis, F Chloroquine in granulomatous rosacea. [Miscellaneous.]Journal of the European Academy of Dermatology & Venereology Supplement. 16 Supplement 1:117, September 2002.
AN: 00147299-200209001-00657.
AN: 00147299-200209001-00657.
My own dermatologist in London, Professor Tony Chu, prescribes both mepacrine or plaquenil in some situations, when dealing with rosacea patients who have severe flushing, redness and burning symptoms and who do not respond well enough to other anti-flushing and anti-redness medication. He told me that patients who respond best to these antimalarials include those with accutane-induced rosacea and patients with underlying autoimmune diseases, particularly lupus. Plaquenil and mepacrine are not a chosen treatment for subtype 2 rosacea with papules and skin outbreaks, although the anti-inflammatory effect of these drugs may in theory improve those skin symptoms too. It is also suspected (but not covered in this particular study) that the antimalarials are immunosuppressive. And that they help as such also to suppress autoimmune generated inflammation, much like the corticosteroids do (but of course the antimalarials are not corticosteroids).
One of the earliest articles found: Mepacrine and chloroquine in the treatment of rosacea (December 1955). (LINK)
Here are some highlights of the 6 page long study: "After mepacrine and later chloroquine (plaquenil) proved effective in the treatment of lupus erythematosus which is often provoked by sunlight, it was reasonable to investigate their effect on diseases which can be wholly or partly provoked by light. Rosacea is one of the diseases which in some cases may be provoked by sunlight, although cold, wind, heat, and several other factors may aggravate it. The studies to be reported below were designed to investigate the value of mepacrine and chloroquine in the treatment of rosacea, regardless of its severity and duration, but with a special view to its possible provocation by light. Of the 57 patients 21 had mepacrine and the remaining 36 were treated with chloroquine. A total of 70 courses were completed, 13 patients having 2, in most cases with chloroquine. The dose was 200mg of mepacrine for the first 10 days followed by 100mg daily. In the cases treated with mepracine the maximum treatment period was 10 weeks and the maximum dose 10 g. Of the 57 patients, 18 became symptom free-infiltrations, pustules and redness disappearing. Relating the therapeutic results to the reported provocative effect of sunlight, we find that 23 patients who reported exacerbation by sunlight 16 improved. Six patients had recurrence 2 to 5 weeks after the treatment was completed: five of these had another course, effective in only one.
Side effects were most severe and most serious in the group treated with mepacrine. During the 24 courses given, 19 patients developed a yellow discoloration of the skin and 2 dermatitis of a seborrhoeic type - both at the end of 2 months treatment. Since the aetiology of rosacea is probably a complex one, it is difficult to investigate one factor - in this case provocation by sunlight. However, the present study showed that the group of patients who report exposure to sunlight as a provocative factor, can be improved or cured by agents which increase light tolerance. Some patients relapsed when the treatment period was too brief. Freedom of symptoms and signs was obtained in 18 of the 57 patients. Sixteen of these were from the group of 23 whose lesions were reported to be provoked by sunlight. The side effects correspond to those observed by other workers. Chloroquine seems to be preferable to mepracine because of the yellow discoloration and the risk of dermatitis evidenced in two cases. It is extremely likely that the effect of mepacrine and chloroquine upon rosacea is due to the capacity of these drugs to increase the light tolerance. Therefore, this treatment should be reserved for cases which the light provocation has been definitely ascertained by the patient himself, as the susceptibility of the skin to quantitative irradiation does not appear to afford any guidance."
In 2020 a new pubmed study was published, headlining: "Hydroxychloroquine is a novel therapeutic approach for rosacea". It concluded: "In this study, we revealed the potential molecular mechanism by which hydroxychloroquine (HCQ) improved rosacea in rosacea-like mice and mast cells (MCs). Moreover, the effects of HCQ treatment for rosacea patients were investigated. In this study, we found HCQ ameliorated the rosacea-like phenotype and MCs infiltration. The elevated pro-inflammatory factors and mast cell protease were significantly inhibited by HCQ treatment in rosacea-like mice. In vitro, HCQ suppresses LL37-induced MCs activation in vitro, including the release of inflammatory factors, chemotaxis, degranulation and calcium influx. Moreover, HCQ attenuated LL37-mediated MCs activation partly via inhibiting KCa3.1-mediated calcium signaling. Thus, these evidences suggest HCQ ameliorated rosacea-like dermatitis may be by regulating immune response of MCs. Finally, the 8-week HCQ treatment exerted satisfactory therapeutic effects on erythema and inflammatory lesions of rosacea patients, indicating that it is a promising drug for rosacea in clinical treatment."And this pubmed study into neurogenic rosacea also found that "Hydroxychloroquine, an antimalarial agent with neuromodulatory effects, and vasoactive agents including β-blockers and alpha-1 adrenergic receptors were each effective in a subset of patients."
The results of these studies were more favourable for plaquenil and slightly less favourable for mepacrine, due to the latters higher side-effect reporting (mostly yellowing of the skin due to the dye in the pills, as well as dermatitis). Both antimalarials improved rosacea symptoms and interestingly, also increased skin tolerance for sunlight exposure. But the control group was small and the symptoms that the researchers focused on were mainly light sensitivity and rosacea symptoms that were provoked by light. Since rosacea is also largely an inflammatory and autoimmune controlled condition, this choice of focus is a little bit narrow. I believe that the mechanism of action of the antimalarials may be more based on the anti-inflammatory and immunosuppressive actions of the antimalarials than on its ability to turn around light sensitivity. But this study also appears to show that rosacea patients whose symptoms are mostly provoked by sun exposure, have the best chance of seeing improvement of their rosacea when taking mepacrine or plaquenil.
.jpg)
On the rosacea forums there have been several discussion threads about these meds. I will try to select the most important statements that were made there and to make an oversight of the several people who used one or both of them and what their experiences were.
Antwantsclear wrote on September 11th 2017: "I've found plaquenil helpful. It is now sold only as hydroxychloroquine, not Plaquenil, in many countries, as the licence for the Plaquenil brand has finished. You can actually get the exact formulation of plaquenil still if you want from the sister generics company to the company who made the branded Plaquenil. It's definitely worth trying to see if it works for you. It is especially helpful for flushing/redness/type 1 rosacea, but may have some benefits for type 2 pustules as well (but less so). It works best to complement a blood pressure medication - either clonidine or moxonidine.
Hydroxychloroquine helps with the inflammation in the vessels, while the blood pressure medication controls the increases in blood flow you get at certain times of the day due to stress, food intake etc. [..] It can definitely help with inflammation and swelling. Diet is also likely to help with reducing inflammation and swelling - reducing sugars and carbohydrates. I think it's important to see hydroxychloroquine as a very helpful tool potentially, but it has to be used in conjunction with other ways of tackling rosacea as well. People with lupus sometimes combine hydroxychloroquine with mepacrine - both antimalarials - and a few people with rosacea do too. This gives the maximum effect in terms of anti-inflammatory impact. Mepacrine can be hard to obtain, however."
Laser_cat wrote on September 12th 2017: "I've been on plaquenil for 7 weeks now. I have subtype 1 with only some swelling (nose swells nightly). I have not noticed any effect yet but will stick with it for 6 months before I decide. My derm said he's seen it help with rosacea swelling . No side effects yet for me. Lizzy"
Antwantsclear had already written about success with plaquenil on July 30th, 2016: "Hydroxychloroquine (the brand plaquenil is no longer available, but the generic form is) has been effective for my flushing. It is best combined with an alpha blocker blood pressure medication such as moxonidine or clonidine (one usually works better than the other, depending on the individual). One option is to take mepacrine once or twice a week and hydroxychloroquine daily. A combination of mepacrine and hydroxychloroquine is a fairly common treatment for lupus, where antimalarials are used more than in rosacea." [..] "Plaquenil (an antimalarial) can have a dramatic effect on rosacea. I take it and it is very helpful. I certainly do not have lupus. Yes plaquenil is used more commonly for lupus but it is also used for rosacea, as is mepacrine (an older antimalarial drug)."
hg24 wrote on February 23rd 2016: "I took it for about a year. It had a calming effect, but nothing more than some anti-inflammatory supplements I've tried. So I decided to stop taking it, given that you have to have regular eye exams since there's a risk there. Some people have responded well to it. I haven't heard of it used for swelling, just post-accutane flushing. Have you tried Queta's approach? Quercetin or garlic? Your symptoms sound identical to hers. It gave her a new life."
Antwantsclear had already written about success with plaquenil on July 30th, 2016: "Hydroxychloroquine (the brand plaquenil is no longer available, but the generic form is) has been effective for my flushing. It is best combined with an alpha blocker blood pressure medication such as moxonidine or clonidine (one usually works better than the other, depending on the individual). One option is to take mepacrine once or twice a week and hydroxychloroquine daily. A combination of mepacrine and hydroxychloroquine is a fairly common treatment for lupus, where antimalarials are used more than in rosacea." [..] "Plaquenil (an antimalarial) can have a dramatic effect on rosacea. I take it and it is very helpful. I certainly do not have lupus. Yes plaquenil is used more commonly for lupus but it is also used for rosacea, as is mepacrine (an older antimalarial drug)."
hg24 wrote on February 23rd 2016: "I took it for about a year. It had a calming effect, but nothing more than some anti-inflammatory supplements I've tried. So I decided to stop taking it, given that you have to have regular eye exams since there's a risk there. Some people have responded well to it. I haven't heard of it used for swelling, just post-accutane flushing. Have you tried Queta's approach? Quercetin or garlic? Your symptoms sound identical to hers. It gave her a new life."
hg24 wrote on April 20th 2015: "Hi, I take plaquenil. Since last May. Am not sure if it works. I think it has helped. Weird because my doc has lowered my dose from 200 mg 2x day to 200 mg 1x day and I'm flushing more. However, it never resolved my flushing completely and I started flushing again before she reduced the dose. She put me on it because I had tested positive for ana, then negative and finally lupus was ruled out. However I was having severe flushing. Colossal full face burgundy flushes. Scared my doc. I like taking it because I feel I have some level of protection with inflammation - but again, not sure it's working. I feel I've had more success from taking zoloft. I think that helped quiet things a little for me. I'm actually trying to find something other than plaquenil to take as an anti-inflammatory. Like a supplement. Still experimenting. If you have P&Ps, I wouldn't mess with plaquenil. But if you have severe flushing, you might be able to convince your doctor. I had to tell mine about this forum and people here taking it. Then talk to a rheumy about it. He said it was worth a shot - takes 3-4 months to kick in at least."
Snoop wrote on July 26th 2014: "This product (mepacrine) does not work for normal flushers or blushers. I have tried it for a long period with no success. Do not waste your time. If anything, I turned yellow."
.jpg)
Other treatment options for subtype 1 rosacea are: -Oral antibiotics, mainly tetracyclines, Oracea and macrolides: used for rosacea subtype 2, with skin outbreaks and pimples and redness. Mainly effective for subtype 2 rosacea, although some people with subtype 1 rosacea with general redness and burning also see improvement on them. Rarely effective for facial flushing and burning. But they don't typically help with facial flushing, and not always with the erythema redness either. All tetracycline antibiotics I tried over the years made me personally a lot more red. I won't discuss them here. They can help some people with rosacea, because these drugs have anti-inflammatory properties, lowering the inflammation of skin and blood vessels in rosacea patients. Unfortunately, for some they come with side effects, especially if you take them long term. It is best for the long term to try low dose doxycycline (Oracea or regular doxycycline at 40 to 50 mg a day), as at this dose the doxy still has anti-inflammatory effects on the skin, but without interfering with normal bacteria in the digestive system.
-Antibiotic creams; metronidazole cream, rozex cream: used for rosacea subtype 2, with skin outbreaks and pimples and redness
-Finacea gel/cream: used for rosacea subtype 2, with skin outbreaks and pimples and redness
-Soolantra / Ivermectin gel/cream; used for rosacea subtype 2, with skin outbreaks and pimples and redness (read more about this here).
-Mirvaso / Rhofade cream: used for rosacea subtype 1 with flushing, redness and burning of the skin. Both have many bad reviews however and can cause rebound flaring of the skin. They constrict the blood vessels in the face temporary, but after that rebound worsening can happen.
-Corticosteroid creams: NOT to be used for rosacea, but some dermatologists prescribe them regardless, as they will help initially to make the skin less red and inflamed. However they can permanently worsen your rosacea and will do so temporarily for (almost) sure; a big gamble.
-Anti flushing medication: clonidine/moxonidine/beta blockers/certain antidepressants, certain antihistamines (read more about this here).
-Natural anti inflammatory herbs, spices etc; (read more about this here).
-Medication to lower histamine or mast cells in the body: can help for those who flush and burn: antihistamines, mastocytosis medication including inorial and zaditine, anti asthma meds including Montelukast or Singulair; (read more about them here).
-Mastocytosis medication (read more about this here).
-Ivermectin or Soolantra; (read more about them here).
-Ivermectin or Soolantra; (read more about them here).
-NSAID's
-Niacinamide (read more about this here)
-Laser or IPL; (read more about this here)
-Low level red light therapy
-Potential help can come from immunosuppressive medication, such as Remicade, methotrexate or mycophenolate. BUT this is very serious medication with worse than average side effect profiles.
-Niacinamide (read more about this here)
-Laser or IPL; (read more about this here)
-Low level red light therapy
-Potential help can come from immunosuppressive medication, such as Remicade, methotrexate or mycophenolate. BUT this is very serious medication with worse than average side effect profiles.
-Diet changes; reducing the amount of inflammatory foods you eat (sugars and simple carbohydrates especially), and/or testing if you have food allergies or -sensitivities (read more about this here).
In February 2006 Banshee started an interesting discussion about plaquenil for rosacea in the following thread:
She stated that she liked to hear about people’s experiences with plaquenil. She had talked with her derm, who was willing to let her try plaquenil and who stated that plaquenil is used in lupus and to treat photosensitivity (something a lot of rosacea people deal with, especially the flushers). That plaquenil also cts as an anti-inflammatory as well as an antioxidant. Banshee also speculated that because plaquenil is an antimalarial and lowers fever, it could also have some effect on the thermo-neutral zone, lowering skin temperature bit, like clonidine does. The dermatologist didn’t know about that. Other questions Banshee posed:
"If its mechanism of action is only anti-inflammatory/anti-oxidant, then
does it in essence only do what antibiotics do & "mask" the
symptoms while not addressing the defective vessels? Requiring you have to take
it again in the future. Obviously interrupting the inflammatory cycle is very positive and in doing so
to the point of reverting the condition, that would allow one's own body to
better handle & recover from flare ups or subclinical damage. None the less
the vessel is still dysfunctional.”
2. “Since ocular rosacea is analogous to facial, does this have the potential
to reverse ocular rosacea as well?”
3. “Does this drug have a half life in one's system like Accutane?”
4. “Is this more effective or contraindicated with people of specific
subtypes...The case posted said "severe" rosacea with burning but
didn't mention flushing. I know it was stated this is being prescribed in
flushing, but since severe can be subjective, does this have potential to
assist even ppl with the nastiest of flushing? I.e. folks who do not have
permanent redness but get intense full face/ears flash flushes. I also think it would be prudent to examine why/how ppl with Lupus get the
butterfly rash aside from the fact their vessels are inflamed.”
Redhotoxe wrote: “In the original thread, it was a little unclear as to how long Plaquenil should be taken for - 30 days, 45 days, 6 months or 1 year. Quoting from the original post: "Short term treatment can completely break the vicious rosacea cycle" ... "After 6 months of Plaquenil treatment I no longer have rosacea" yet "Dosage: 200 mg. Frequency: 2 tablets 1 x day Total Length: one year Brand: Hydroxychloroquine (generic)."
Banshee mentioned that most doctors are concerned about the retinal detachment, since it was in the upper tier of side effects... “So a baseline retinal exam & blood test is done and is periodically monitored. At least that's what my derm would have me do. She also mentioned they prescribed this for Lupus sometimes for 10-20 yrs & it has a decent history.” Redhotoxe agreed that if the inflammatory cycle could be stopped, one could possibly assume that there would be no new Rosacea symptoms popping up in the future.
I personally think that a lot of the rosacea symptoms come from this internal inflammation. I believe that in a lot of cases the immune system is overactive, creating an autoimmune problem. For many that manifests itself in inflammation symptoms (the immune system ‘detecting’ danger where there is no danger and sending proinflammatory substances to it) in different organs. In subtype 2 rosacea this may also be the case sometimes, for instance when demodex mites are involved. Many rosaceans have some form of bowel problems (and some believe they are the source of all the trouble) or other forms of inflammation in the body, apart from rosacea. Broken blood vessels aside: I believe that when this immune system can be brought to rest and the inflammation levels in the body can be brought down, a lot of rosacea symptoms may get much less and bothersome also. So, I hope the plaquenil/ mepacrine can help with just that.
.jpg)
I will make a summary of the forum members who use(d) plaquenil or mepacrine and who wrote about it
Denisfh wrote: "I've been on Plaquenil for over two years (for Sjogren's) and my
flushing is just as bad as it ever was, so for me at least it hasn't
helped there. I've been on Clonidine for many years (for Rosacea) and
while I don't think it's ever helped my flushing, it seems to keep my
nose from swelling and turning red." - Plaquenil didn't help her in the 2+ years that it was used.
Doug also started with plaquenil and wrote: “I started taking Plaquenil a few weeks ago and I think my face might be a little calmer. Mainly the burning. I have been told you need to give Plaquenil about 3-4 months to see great results." And later: I haven't noticed many side effects with Plaquenil. I believe I take 200 mg 2x daily. So I take it with breakfast and at dinner. I asked my doctor about it and how its helped others with rosacea , and light sensitivity, burning, etc... He said it was a safe drug to take and if I were going to use it more than 1 year to have my eyes checked." Plaquenil seemed to make Doug's face a bit calmer". - I haven't found more updates from Doug.
Grace123 experienced increased flushing while on plaquenil: "My dermatologist prescribed Plaquenil for my Rosacea. I have been taking it for 6 days but no improvement has been noticed. However, I experienced increased flushing because of this medicine. I wonder whether I should continue or not." - She later again noticed increased flushing while on plaquenil. Despite her doctor increasing her dose from 400 mg a day to 600 mg, around week 3.
Grace's latest update about plaquenil: "There have been a few posts on here inquiring about plaquenil so I thought I would relay my experience with it. For your information, I have a pretty severe case of vascular rosacea with intense flushing and burning. I started taking plaquenil about 7 weeks ago. The first few weeks the flushing was much worse - yet after 4-5 weeks the flushing began to noticeably decrease. It was quite dramatic. Yet unfortunately right around this time I started to have bad side effects and had to stop taking it. But I wanted to let others know that plaquenil really works - I urge others to at least try it. Regarding the side effects - most people are able to tolerate it just fine. I just have a rare problem with my adrenals and am not able to tolerate any medication that stimulates the adrenal cortex - which antimalarials do - which I hadn't realized. If the side effects weren't so awful for me, I for sure would continue taking it." - Conclusion: plaquenil made flushing and burning initially worse, then notedly and significantly better after the 5 week mark. Discontinued due to side effects.
Halfpipe101 wrote about initial increase of facial flushing and redness when starting with mepacrine in earlier posts, but later mentions dramatic improvement on his flushing and redness, also of his hands and he developed his symptoms after accutane use. He later updated: "I have been getting kind of a tan lately. I work by the water so it's hell for my flushing with the heat here in the summer. Last summer it made me a red, flushing, burning mess. I seem to handle the sun a lot better these days and I am actually getting a light tan. Reminds me of before I had rosacea. Too bad the seb derm area is not tanning but I'm trying to clear it up with znp bar". - Conclusion: eventual significant improvement after the 5 week mark of using mepacrine, to the point of almost a pre-rosacea state.
iVan lso used mepacrine and wrote: "I have been on mepacrine for 2 weeks now, 100 mg/day. Main side effect has been insomnia but it is lessening now. Also, several mornings a week I start the day with what seems like the beginning of a cold (sore throat, runny nose, congestion etc) but by noon it is always gone. This may or may not be an effect of the mepacrine. No positive results on redness or flushing yet. However, I have spent the last 2 weeks re-roofing my house and my skin has been able to handle the sun exposure better than normal. Maybe the mepacrine helps that."
-Then surprisingly he updated: "I've been taking it daily for almost 4 weeks now. Nothing to report either good or bad. Has not helped flushing or redness but there have been no negative side effects either. It does not seem to be the 'miracle cure' but I will wait until my 3 month supply is finished to draw any final conclusions".
-Latest update from iVAN on the mepacrine trial: "Well it's been 2 months since I started the mepacrine. It has not done a thing for me. Flushing/burning is now worse than ever. It did not help with my fatigue nor muscle and joint pain. It has however turned me yellow enough that people are asking me if I have a liver problem. I stopped taking it as of yesterday. Will try remeron to see if it offers any relief." - End conclusion: patient reported after 8 weeks that flushing and burning had not improved and seemed to have worsened in fact from mepacrine. Side effect was yellow skin. Less sensitivity to sunlight. Patient stopped taking the mepacrine.
Doug also started with plaquenil and wrote: “I started taking Plaquenil a few weeks ago and I think my face might be a little calmer. Mainly the burning. I have been told you need to give Plaquenil about 3-4 months to see great results." And later: I haven't noticed many side effects with Plaquenil. I believe I take 200 mg 2x daily. So I take it with breakfast and at dinner. I asked my doctor about it and how its helped others with rosacea , and light sensitivity, burning, etc... He said it was a safe drug to take and if I were going to use it more than 1 year to have my eyes checked." Plaquenil seemed to make Doug's face a bit calmer". - I haven't found more updates from Doug.
Grace123 experienced increased flushing while on plaquenil: "My dermatologist prescribed Plaquenil for my Rosacea. I have been taking it for 6 days but no improvement has been noticed. However, I experienced increased flushing because of this medicine. I wonder whether I should continue or not." - She later again noticed increased flushing while on plaquenil. Despite her doctor increasing her dose from 400 mg a day to 600 mg, around week 3.
Grace's latest update about plaquenil: "There have been a few posts on here inquiring about plaquenil so I thought I would relay my experience with it. For your information, I have a pretty severe case of vascular rosacea with intense flushing and burning. I started taking plaquenil about 7 weeks ago. The first few weeks the flushing was much worse - yet after 4-5 weeks the flushing began to noticeably decrease. It was quite dramatic. Yet unfortunately right around this time I started to have bad side effects and had to stop taking it. But I wanted to let others know that plaquenil really works - I urge others to at least try it. Regarding the side effects - most people are able to tolerate it just fine. I just have a rare problem with my adrenals and am not able to tolerate any medication that stimulates the adrenal cortex - which antimalarials do - which I hadn't realized. If the side effects weren't so awful for me, I for sure would continue taking it." - Conclusion: plaquenil made flushing and burning initially worse, then notedly and significantly better after the 5 week mark. Discontinued due to side effects.
Halfpipe101 wrote about initial increase of facial flushing and redness when starting with mepacrine in earlier posts, but later mentions dramatic improvement on his flushing and redness, also of his hands and he developed his symptoms after accutane use. He later updated: "I have been getting kind of a tan lately. I work by the water so it's hell for my flushing with the heat here in the summer. Last summer it made me a red, flushing, burning mess. I seem to handle the sun a lot better these days and I am actually getting a light tan. Reminds me of before I had rosacea. Too bad the seb derm area is not tanning but I'm trying to clear it up with znp bar". - Conclusion: eventual significant improvement after the 5 week mark of using mepacrine, to the point of almost a pre-rosacea state.
iVan lso used mepacrine and wrote: "I have been on mepacrine for 2 weeks now, 100 mg/day. Main side effect has been insomnia but it is lessening now. Also, several mornings a week I start the day with what seems like the beginning of a cold (sore throat, runny nose, congestion etc) but by noon it is always gone. This may or may not be an effect of the mepacrine. No positive results on redness or flushing yet. However, I have spent the last 2 weeks re-roofing my house and my skin has been able to handle the sun exposure better than normal. Maybe the mepacrine helps that."
-Then surprisingly he updated: "I've been taking it daily for almost 4 weeks now. Nothing to report either good or bad. Has not helped flushing or redness but there have been no negative side effects either. It does not seem to be the 'miracle cure' but I will wait until my 3 month supply is finished to draw any final conclusions".
-Latest update from iVAN on the mepacrine trial: "Well it's been 2 months since I started the mepacrine. It has not done a thing for me. Flushing/burning is now worse than ever. It did not help with my fatigue nor muscle and joint pain. It has however turned me yellow enough that people are asking me if I have a liver problem. I stopped taking it as of yesterday. Will try remeron to see if it offers any relief." - End conclusion: patient reported after 8 weeks that flushing and burning had not improved and seemed to have worsened in fact from mepacrine. Side effect was yellow skin. Less sensitivity to sunlight. Patient stopped taking the mepacrine.
j40 wrote: "I have been on Mepacrine for 4 months and I have not really noticed any improvements. I have permanent redness. But the slight yellowing of the skin does give the red a tanned look i.e. the red is still the same but my overall appearance looks better. The Mepacrine works kind of like a camouflage/disguise so I'm happy to stay on it while I try and find a more effective treatment."-And later: “I have to admit, and should have said it in my earlier post, that I have noticed that my skin burns a hell of a lot less than it used to and I blush deeply a lot less (** - I think), though it still occurs. My Derm is Dr Chu and he has found it fairly successful (though with a Health Warning of plenty of stubborn exceptions). He advises that the only noticeable side effect should be the possible tinting of the skin. To be honest it is quite slight tinting. The yellowness is not the unhealthy gaunt look of jaundice, rather my body has a sort of glow, a bit like say a fake tan. The redness of my face looks like that phase of sunburn where its half burn/half tan. I have had several people complimenting me on my tan - ha ha. The prob is when I meet them again, I still look as if have sunburn and I feel a bit awkward. I am not entirely comfortable referencing Dr Chu as it is not entirely ethical towards him, and could mislead someone reading, so treat everything with the skepticism it deserves and do your homework on this - i.e. please don't self prescribe this and come back and blame this post or Dr Chu if you grow an extra limb or suffer some other horrible side affect. ** - I noticed in the mirror the other day I had gone really deep red without physically feeling it, so I'm not even sure how often I blush deeply, as a guy I would like to prioritize the perm red as I cannot disguise this with makeup.” - Conclusion: less burning and less deep blushing while on mepacrine. Slight tan. Still redness however.
Lamarr reported fantastic results after starting with mepacrine. After an initial worsening, the mepacrine eliminated his flushing and burning and redness almost completely after the 5 week mark. He had developed it after using accutane. He wrote: "Also... I have lowered my dose for the past month to 50 mg per day and the flushing is still long gone and I have no signs of anything returning... As a side note, the mepacrine and all other antimalarials allow you to get an AMAZING tan. They prevent you from burning and simply allow you to tan so easily. My mum is actually on an antimalarial for reactive arthritis (on my recommandation) and it is working better than sulfasalazine, steroids and it (touch wood) looks like she will be able to avoid methotrexate. A later update from Lamarr states: "I no longer flush AT ALL, I have some MINOR redness (mainly just under my eyes). Not noticeably at all... I only notice it because I'm used to looking for it. As for my other accutane side effects... Well my eyes are still bad, the diffuse alopecia areata is still present and strong. I rarely get the odd mouth ulcer still, skin dryness is actually pretty normal now... It is mainly just the hair loss and eyes that still bother me... I still get some bad folliculitis in my beard also. I treat all of these things separately pretty effectively, but they are still there..." - End conclusion: dramatic improvement of rosacea symptoms while on mepacrine, including flushing, burning and redness, to the point of almost no rosacea symptoms. Some side-effects however, including eye symptoms and diffuse alopecia areata.
Mutantfrog started using plaquenil and wrote: “I've been on Plaquenil for 5 days now. I was told to do 400mg (but) I'm sticking with just 200mg/day and decided I'd rather take longer for the Plaquenil to 'kick in'. So far I've found: severely worsened acne (these look more like cystic acne, but flatter...or hives, possibly? In all fairness though I'm under a LOT of stress for the next 2 weeks/last 2 weeks - job, civic stuff, school and personal stuff all at the same time). Nightmares (I take the dose in the AM though). Mild nausea or "loud" stomach, starting an hour after I take it and lasting about 2hrs; no actual sickness. But also: increased energy already. I've been much less stiff in my spine and hips the last 2 days. My fingers are still very red and angry, but the swelling is coming down and they're not painful anymore. My pinky joint still looks swollen/deformed but it doesn't HURT - so I see this as a positive sign. I've lost 3lbs in 5 days. I thought I wouldn't see any good effects for a few more weeks. Maybe it's placebo, I don't know. I will definitely give it 2-3 months before deciding it is causing too much of a skin problem or not. At this point, I'd accept that it even makes my face a little worse if it means that it helps my joints and other inflammatory problems. Steroids... I just can't do em. And I figure if the skin problem persists, maybe I can add Celebrex to the Plaquenil since the Celebrex seemed to help my skin a LOT. I'd rather not be on two RX's like this, but hey... I gotta do what I gotta do.
-A later update mentions acne as a side effect: “Re: Acne: OK glad to see someone else noticed this same thing. I'd seen it listed as a side effect - and this was weird acne for me, not quite cystic and kinda well ITCHY. A few popped up in places I NEVER get acne too (like underneath my eyes. WEIRD.). It was continuing to crop up until about a day and half ago - now it's all gone/healing and I don't see any more 'starting'. So...*whew*. Even if it continues come back periodically, but my joints continue to feel better - it might be worth it (gasp!).”
Murtantfrog last updated on the matter: Following up on my progress with plaquenil. Originally I was supposed to do 400mg/day for a month and then step back to 200mg/day. With the headaches and such (fluid behind my ear but no infection + neck muscle strain, after all...not plaquenil related) Rheum wanted me to step back to just 100mg/day. She said I could either cut a pill to take 100 every day or just take a 200mg pill every other day. After 2 weeks on 200mg/ day I followed her suggestion to cut back to 100mg/day. Within about 4 days the DM had come back with a vengeance on my hands. This was surprising to me because I thought Plaquenil took weeks to get up to 'effective dosage' in the body. When I asked about this, the Rheum gave me the 'everyone is different' speech, but also said that it would be effective faster on skin than on joints. The nightsweats have stopped. The head pain is mostly gone... I am still having some back of head/neck pain, but it's relieved with a muscle relaxant and is getting better. When I went in to the doctor (right after my last post) to check my ears I did have a low grade fever (about 99.9F - usually I'm cooler than most people) but I have not had any other instances of fever since. The swelling in my fingers is GONE. My face is also looking a LOT better. The acne seems to be leveling out, mostly. And my redness is improving. I am still more red on the left side, and there is still some residual redness. But it looks like maybe I applied some blush or something - not "what happened to your face?" red. And no swelling (which is what was really disconcerting to me). I haven't had any of the major flushes on my face that involve heat + intense blotchy flushing + swelling from my cheek that goes up into my eye, which was a big problem before plaquenil. Not even prednisone kept that totally away. Do I still get blotchy red on my face? Yes sometimes. I was in an embarrassing social situation about a week ago and I got quite red/blotchy (again, always more on the left side) but it didn't swell, and it went away in less than an hour. I can accept that. Like it's almost weird to see myself in the mirror because I"m SO used to seeing at least a moderate amount of 'baseline red' in my skin and now it's just not here.... I look so different (IMO anyways). Fingers crossed that it will continue to go well. - Conclusion, mixed reports initially: some transient acne and later some hives but also improvement in finger swelling and a decrease in facial flushing. Seems that the plaquenil was helping.
Myleastfavoritemistake used plaquenil and wrote:
“I am taking 400mg daily (200mg twice a day). I have been doing this for about 3 months. However, my dermatologist says the medication accumulates in your system, so over time he would want to taper me down to a lower dose. Unfortunately, I actually recently dropped down to half that dose (200 mg) for a couple weeks and I felt that my flushing symptoms increased during this time. Then went back down after I increased my dose back to 400mg. I am torn because I know there are risks with eye toxicity, and I know people say 400mg is right at the limit of the accepted safe dose. But I seem to need about that much to affect my flushing symptoms.” Later update: “I am pleased with Remeron. personally if feels like it just calms me down and reduces anxiety flushing (u kno that when-you-think-about-flushing-you-flush type). I am able to handle the sleep effects now. and it feels nice for depression (which is something I deal with). Keep in mind that I am also taking 400mg daily of plaquenil. Also, I apply brimonidine ophthalmic eye solution topically (works as a fast acting anti-flushing). So between the three I've make noticeable improvements. - Conclusion, it seems the plaquenil did help with the flushing. Then poster started using Remeron and brimonidine and found more success, unclear exactly how much the plaquenil was helping by itself.
“I am taking 400mg daily (200mg twice a day). I have been doing this for about 3 months. However, my dermatologist says the medication accumulates in your system, so over time he would want to taper me down to a lower dose. Unfortunately, I actually recently dropped down to half that dose (200 mg) for a couple weeks and I felt that my flushing symptoms increased during this time. Then went back down after I increased my dose back to 400mg. I am torn because I know there are risks with eye toxicity, and I know people say 400mg is right at the limit of the accepted safe dose. But I seem to need about that much to affect my flushing symptoms.” Later update: “I am pleased with Remeron. personally if feels like it just calms me down and reduces anxiety flushing (u kno that when-you-think-about-flushing-you-flush type). I am able to handle the sleep effects now. and it feels nice for depression (which is something I deal with). Keep in mind that I am also taking 400mg daily of plaquenil. Also, I apply brimonidine ophthalmic eye solution topically (works as a fast acting anti-flushing). So between the three I've make noticeable improvements. - Conclusion, it seems the plaquenil did help with the flushing. Then poster started using Remeron and brimonidine and found more success, unclear exactly how much the plaquenil was helping by itself.
Phlika29 used mepacrine and she didn’t get any additional flushing when she took it. From the first tablet she writes she could feel that it calmed her rosacea: “It worked very quickly. My flushing reduced within a few days and stayed that way the whole time I was on it. I don't take it anymore and whilst my flushing came back when I stopped it is not at the level that it was. I don't really get any papules (not since my lasers) and so can't comment on this. Yellowing of the skin was one side effect but it was the hair loss and the increased bruising that were my biggest worries. I turned fairly yellow, enough for people to comment. Luckily the hair loss was mostly hidden but the bruising was very noticeable.” “Maybe, I did reduce the dose by half for about a week and still had problems with the bruising (don’t think I had any more hair loss and I am sure that the yellow would have faded) but by then I had sort of become too worried to be comfortable taking it. What I could never work out was whether the sudden increase in dilated veins (not just on my face) was just a coincidence. it probably was.” “I would agree that the affect of the drug is pretty impressive. Whilst I was on the medication I didn’t flush and since coming off it my flushing has remained much improved. I would love to still be on it but the hair loss and the bruising started up fairly quickly. The bruises appeared wherever there was slight pressure, so for example I would get lots of tiny bruises across my chest where my seatbelt laid, etc. The hair loss was at both sides of my forehead and general thinning. I haven’t given up with the drug completely, my plan is to speak to Dr Chu about it next month when I return to see him. - Conclusion: mepacrine calmed the rosacea but caused too many side-effects, mainly bruising and hair loss.
Rand627 tried mepacrine for his Accutane-induced rosacea and flushing: “So I'm basically one of the luckiest guys in the world today. Called my college and they are letting me extend my deferment, which I thought was impossible. My rheum then called about 10 minutes later saying that instead of the chloroquine, she was going to put me on mepacrine instead. Apparently my insurance didn't want to approve of the chloroquine, so she just gave up. I've wanted to try mepacrine for the longest time. Ever since I read about halfpipe, lamarr's, and a few other stories about it.. I am completely stoked. I know that it isn't guaranteed to work, but I can't help but hoping that it will. For those of you who don't know my story, I am one of the accutane-induced flushers. I'm not sure that it should be classified as rosacea or something else, but it closely imitates the redness and flushing that is associated with rosacea. Any room above 75 degrees in temperature is a nono. If I'm not in front of a fan I'm completely red. If I go into ANY social situation and am not in front of a fan, I flush. Any amount of physical work makes me flush. Most of you guys know the triggers, so I won't continue on.” (Link)"
-On day one Rand627 posted “OH MAN. I finally took my first danged pill. AND MY FACE IS PERFECT NOW”. Snuffleupagus mentioned that 4 months of mepacrine didn’t help him/her in the past."
-On day 5 Rand627 updated: “Bit of encouraging news, went to church for 2 hours today and only got to about 10-20% of a flush. Usually I get to around 50 or 75%. However, I have a feeling that this was more due to the weather than anything..as it's finally turning to Winter down here in So-Cal. Still no digestion or head problems. No real change as far as base redness. I'll be back in 5 days for the 10 day update.”
-On day 15 Rand627 wrote: “I can say for certain that my skin is less red than before and that I don't flush as easily. However, the recent drop in temperatures could easily be the cause of this.”
-Day 30: “My face is dealing so much better with heat in general. I can now actually lean down to pick something up without my face starting to burn. I can work out in the yard or indoors and the sweat will usually make it so I don't flush at all. In fact, my face will oftentimes be cool to the touch when I'm sweating. Now, I don't know if this is the case for heavy duty work. I've only really tested light and medium duty type of stuff. Residual redness is still very high. I'm really hoping that this goes down in the months to follow. I know that each time you flush you get redder, so the opposite should hold true. Time will tell. If it's not going away in 3 or so months I'm considering buying an RLT unit. Maybe it will help. So yes. The mepacrine has helped rather dramatically for my skin. Side effects have been minimal. It's actually helped pretty dramatically with fatigue. I was always one of the guys that slept the most and was still the most tired. Now I'm not getting really tired until about 2. I need to adjust my sleeping schedule. I thought that the energy boost associated with mepacrine would be kind of a spike in energy. It's more of an evening out of your energy. I don't feel tired throughout the day and then it just hits me that I'm finally tired. It's definitely changed the way I sleep/feel during the day. I am still having an issue and that's with the warm room flush. When I'm workin around the house I do fine.. although it is 70 degrees. As soon as I stop and relax though I do start to flush. The quinacrine really hasn't helped with that yet.”
-Month 2 update: “So, in a nutshell I must say I'm disappointed. But at the same time, I was hoping for a complete cure. It's certainly helped, but cured.. nope. It is only month 2 and it can still help, so hopefully it will. As far as flushing and redness goes, no change from the first month.” Then he reported that his skin got a lot worse when he added vitamin D3 and red light therapy. After stopping all this and the supplements he wrote: "So it's only been about a week since my last update, but gosh dang. I'm definitely glad I decided to stop everything but the quinacrine. It's made a huge difference. I'm sitting here in a 72 degree room and am not flushed in the slightest. Residual redness is down as well. The only thing I can really attribute it to is going off of everything. However, the humidity has recently started to shoot up which may have something to do with it. But man, if this is after 5 days I can't wait to continue to do this. Wish me luck!”
Next update is not as good: “As far as updates go.. hmm. I wish there was an easier way to explain all of this. It makes sense in my head but it's very hard to write down. The quinacrine has definitely helped. It has not been a cure though. I still flush and have day to day redness. That's the basics. Before the quinacrine I had just gone through a ton of treatments to try and help. Finacea, IPL, elidel, metrogel..etc. They all made it quite a bit worse. It was to the point where if I wasn't in front of a fan, I couldn't watch TV or do anything on the computer. The only time I ever didn't use a fan was during dinner and it always made me flushed. Also, I usually go to 3 hours of church. I never made it past the first 10 minutes without flushing. It's kept relatively cool but it's lit by fluorescent light. Now I can go all 3 hours and start to feel a flush at the end. The last hour is in a relatively small room with quite a number of people in it. The lights are only 5 or 6 feet above my head. So I'm in a stale room with tons of fluorescent bulbs and it gets humid and hot thanks to the other people. That particular situations strain my skin but it usually holds. I can also watch TV and do computer stuff without too much difficulty. Can't wear headphones though, makes my ears way too hot. So yeah, it's helped. Quite dramatically in fact. The mepacrine has helped. Without a doubt. I just hope it continues to help." - End conclusion: plaquenil seems to be helping with flushing and redness and improve patients reaction to triggers, although it has not been a cure.
RatherBeSkating used plaquenil and got eye problems.
“Hey again guys, I recently found out that the reason I was getting blurred vision and seeing halos while on Plaquenil was likely because of the buildup of melanin behind the eyes that it can cause. You can't see through Melanin, so that's likely what was causing the blind spots. Anyone have any experience with this and know a way to prevent it happening? Plaquenil is a wonderful drug for rosacea, but when I can't see, it isn't worth it. By the way, the blind spots always revert back to normal after I stop taking it. And I'm still having excellent results from my clonidine/ melanotan/ tanning combo, but I know that plaquenil would be much more effective. Was on 200mg/day for around 3 weeks before the side effects kicked in. Side effects were chronic itching and, imagine when you stand up after being sat down for too long, and you get a head rush where everything is grey for a couple seconds, well kinda like that but all the time :/ Think I may be allergic to it due to the itching. It's under control mostly with clonidine and melanotan but I don't wanna be on those forever.” - Conclusion: plaquenil helped but gave too many side effects (especially of the eyes) and patient found relief instead with melanotan and clonidine.
RedFaced wrote about plaquenil and mepacrine: "It has a wide variety of known effects: aspirin-like anti-inflammatory effects, mild immunosuppressive and (mild) cholesterol lowering effects, amongst others. Perhaps an important property is that of sun-protection in the skin. This may contribute to its success in treating many sun-sensitive rashes in lupus. I don't think eliminating the parasite is what is responsible for the antimalarials' effects on skin. Mepacrine has very similar effects on the skin and it eliminates a different parasite then Plaquenil. Coming up on 1 week of using mepacrine. No yellowing of the skin. Some transient headaches, which seem to be going away. No other sides. Some increases in flushing over the 5-6 days. Will report back in another week.”
RedFaced initially reported there was no change after one week of mepacrine use and that the flushing had increased and had become pretty bad. RedFaced then updated: “I am doing pretty good on it. I can tell it works for flushing, my skin is much calmer but it makes me jittery and unable to sleep. I started taking it every other day, which helps a little with the sleep but I am still waking up almost every hour at night and taking a long time to fall asleep some nights. I can feel it doing something, because I have been flushing less to triggers while taking it. I have been on it about just over 3 weeks. When I see the derm next week I am going to ask him about Plaquenil and his thoughts on switching over, because it is not stimulating like Mepacrine and essentially will do the same thing. I have read up on the eyes and it seems that it is only a risk if you are on high doses for your body weight for 5+ years. Although my flushing has only begun to see some improvement, I still flared the other day when I was under some personal stress for the afternoon which calmed down once I had the situation under control/resolved. I don't think Mepacrine is a magic bullet that will turn off rosacea overnight.”
RedFaced then updated: “I am taking Mepacrine and it is starting to help with the flushing (been about 3.5 weeks) but I am having issues with not being able to sleep (insomnia) and waking all through the night. Also feel a bit keyed up or jittery. I have learned that it is the strongest stimulant of the antimalarials, so was thinking about asking my derm about Plaquenil as the effects are the same except it is not as stimulating. Shame because I can see it is helping and feel it is helping. Not sure what to do about this problem... I want to take it because I know it works I can feel it start working with flushing etc. But then get this terrible sleep issue and also feelings of being restless throughout the day. Believe it or not, I am already taking Remeron 15mg per night. I have some clonidine from last year that I think maybe would help with combating the stimulatory effects... not too sure. I see the derm next week so should be interesting.”
RedFaced then updated: “Not going too bad lately. Has helped with flushing and redness for sure, sleep issues seem to be getting better as well. Knock on wood, this may work out but it is still early goings for me. Phika29, I think maybe you were on to something when you stated your theory that it perhaps works best for those who have had their Rosacea/Flushing worsened by Accutane... seems that those who have had positive signs have been those who had their flushing flared by Accutane. I've been on it for some time now, flushing is still improving, not gone but getting better as the days pass. I guess I am one of the lucky ones who has had it help them - hoping I can stay on for a while.” - End conclusion: mepacrine seemed to help the flushing and rosacea.
Snuffleupagus tried mepacrine “Well my skin has been a mess the past few days. Weird, because when I started this, I didn't notice any ill effects until now. Maybe it's starting to work? The whole 'it gets worse before it gets better'. I didn't get worse right away though... So yesterday my whole face burned, even when fanning myself or in the cold basement. Today it has diminished, but is still faintly there. Weird enough, my ears are burning right now! Ow!”
Snuffleupagus updated: “I am having some issues with sleeping. I have read that Mepacrine is a cortisol stimulant, which means it has mild stimulant effects, sort of like a mild "upper". I am trying taking it in the morning, but it hasn't helped much. I have read that insomnia and excitability have been listed as possible side effects. I am hoping this issue of not being able to fall asleep and stay asleep passes over the next few weeks. The last few days have been more painful than before, including the skin stinging all day today. I didn't have the worsening until 2 weeks in, but I know everyone is different. My boyfriend thinks this is the getting worse you guys had and that it starting to work in my system. Hopefully the drastic improvement starts soon!”
Snuffleupagus then updated: “So it's now been 4.5 weeks. Still suffering. From day 1 I didn't feel any difference, but from 2.5 weeks till now (2 weeks later) I am still constantly flushed or blotchy. Yesterday I had a burning/stinging face all day (never happened before that this redness could last 8 hours!!!) Today doesn't really hurt at all, just have a nice blotchy face... Even in nice, cold environments. Again, before this would never happen. If it was nice and cool in my home I would be relatively pale. It's hard not to be angry or upset when you guys are having less flushing and I'm still in this state of worse flushing than before the mepacrine. You know how it is, you just want it to work so bad you feel kinda hopeless. Sometimes I just want to break down and cry because it's such a weight on my shoulders, all this waiting.”
Snuffleupagus then updated: “So my days of burning/stinging/itching for no reason, even in A/C, are gone! Woo. Still flushing, still getting red of course. Seems to be more even though, rather than blotchy. Also I don't think I flush *as* red. But you know how it is, change is really hard to see and this seems to be a slow process! I'll be on it for 6 weeks this Saturday.”
Snuffleupagus then updated a few days later: “Well today is a red and blotchy day for me. I wish I was seeing good results like you guys are. Makes me worry this isn't going to work for me, as I am at 6 weeks already.”
Then (after doc told her to continue the med until the 12 week mark): “Still confused with the mepacrine here. For some reason I have been getting burning still, and very prolonged (number of hours). This is very odd as before I never had flushing that lasted that long. And this feels like less of a "hot burn" and more of a "cold burn" (you know in winter when you go outside, then come inside and have that burn that also feels cold?) It doesn't happen every day, usually at least 2 times a week, sometimes 2 days in a row. I've searched online and found nothing that said mepacrine can cause/increase flushing. The only thing it said was if taken with alcohol, it can cause flushing, but I don't drink alcohol. Anyone have any clue what is going on with me!?? I am praying that if it doesn't work if i go off it i wont be left with any negative effects - what do you think? I hope i'm not permanently damaging my face...”
In the end Snuffleupagus used the mepacrine 2 summer's ago, for quite a few months (wanted to give it a good try). He/she updates me that it actually made the rosacea flushing worse - constantly red and burning for no reason (sitting in a cool basement!). “I had increased flushing and burning. Still trying to get rid of it as it has a very long half life and will take a month to 2.5 months to be 100% out of our system!!” - End conclusion: discontinued mepacrine after increased symptoms.
SoSickOfThis also used plaquenil and noted: “Hey, I started taking Plaquenil about 10 days ago and it made me really sick. I had slightly blurry vision, and I have been very nauseous and dizzy for the past few days. So needless to say I am going to stop taking it. So, verdict here is not sure if Plaquenil worked for the flushing but no I didn’t continue due to side effects.”
Sammi also used plaquenil and wrote about it: “I'm taking plaquenil right now. I've been on it for about a month, the only side effect I had was blurry vision after about 5 days. Apparently this is an uncommon but not serious side effect. I stopped taking it for a while, while I was getting my eyes checked, and then started back on it again with no problems. The eye problems are really rare and usually only occur after you've been on it for a long time. If you don't exceed 6mg/kg of body weight you should be fine. Also it's recommended to have a baseline eye exam and then get checked again every 6 months to 1 year. If they catch any problems early, they can take you off the medication, and any problems are reversible.” “I do take it for my rosacea,... my rheumatologist also seems to think I have mixed connective tissue disease b/c my hands get really swollen sometimes.. and I get a blue kind of lacy pattern on my arms and legs when they get cold. I haven't really noticed much results so far, I know it's supposed to take a while for it to work. I talked to some people with lupus and they said sometimes it takes up to 9 months before seeing any results. I have been having some "good days" lately tho.. a good day for me is when I can sit in front of a fan all day and not flush/burn.. So hopefully that's a good sign!! .. I"ll keep you posted if anything changes. If anyone wants more info pm me anytime.. I have lots of papers and information on the stuff!!” [..] “I started the plaquenil May 10th, and then took it for about 10 days, and stopped b/c of my vision going blurry. I took a 2 week break from it, then started back again with no problems. I'm on 200mg/day, Im pretty small so the 200mg is enough for me.”
Sammi updated: “I had to stop taking the plaquenil.. I started seeing halos of light and had missing/blanked out spots in my vision. I went to my regular eye doc.. and she said she couldn't see anything, but she agreed to send me to an opthamologist. (I dont go until Aug 29) I also called my rheumatologist and she didn't really know what to do, but I do know that it can be an early sign of the vision damage cause by the drug.. and my vision is definitely not something I want to be messing around with. So for now I'm not taking it.” - Conclusion: plaquenil worked for the flushing but Sammi didn’t continue due to side effects (eyes).
Shantelle posted in May 2010 in response to the question 'I have read that Plaquenil has helped people with Rosacea. Have you read this? Has anyone tried Plaquenil? If so what were your results?': “Yes it does have a track record of helping people with Rosacea (it's still a relatively new idea though), especially on acne.org with post-Accutane flushers. Plaquenil is a cousin of Mepacrine. Essentially they have the same effects, being primarily an antimalarial R.Arthritis & Lupus medication (helps decrease inflammation etc). Except that at long-term, 100mg day Mepacrine is known to cause yellowing of the skin, espec in fair skin people. And when on Plaquenil, you don't have yellowing effects. But your eyes need to be monitored by an opthamologist every 6 months or so. My Rheum said you don't need to worry too much about Plaquenil affecting the eyes, until the cumulative dosage reaches very high levels (e.g. ten years use of 400mg+ a day), but that it is better to be safe than sorry. I use Plaquenil and have Rosacea symptoms (Type 1) and also being monitored for Lupus over the next 6 months. It has decreased inflammatory symptoms and the flushing level quite a bit so far, but as I'm only on a low dose 200mg, I still have some way to go before the medication really starts to kicks in (from month 4-6). Lupus patients generally start at 400mg+ day and therefore for most it starts kicking in month 2-3 and then medication peaks again month 6. Hope this info helps..." (Link)She later updated that she is doing very good on the plaquenil. Her flushing and redness have gone down and her blood work (ANA levels and ESR levels) all improved as well. She says it took 4-5 months before she noticed improvements: “I could tell because it was kicking in, because I was far less tired and didn't need lots of sleep, and then eventually the flushing halted. I only take 200mg nowadays and occasionally bump it to 400mg (1x am, 1x pm - never double dose as double-dosing can increase burning/flushing) if I feel I need extra anti-inflammatory benefit, like for a migraine or feeling easily exhausted etc”. In later posts Shantelle seems to keep doing well on plaquenil and from what I understand she still uses it and also had successful V-beam laser treatments. - Conclusion: Plaquenil helped her with redness and flushing, without problematic side-effects. Side note, Shantelle has other underlying autoimmune conditions.
Threesixty also tried plaquenil
“I have been on plaquenil now for about 4 weeks, taking 600mg a day (400mg in the morning, 200mg in the evening). My ocular rosacea got much better in just one week. No pain on eyelids and redness cleared a lot in the eyes. When it comes to my cheeks (permanent redness, flushing) it has improved. Hard to say how much, but I am very happy of the progress so far. Even when I exercise, my face doesn't get so hot. I am also on lyrica (7 weeks now) and applying neocutis cream (6 weeks now).” “No side effects. At the beginning I had some probs with stomach, but nothing too troublesome. I have been on it for five weeks now, taking 600mg a day. There has been improvement I must say. Definite plan is to keep taking these, but to reduce the dosage to 400mg a day.” “It really is impossible for me to say exactly how much it has helped, but the background redness has reduced perhaps. Flushing, hard to say. I also started with doxycycline (40mg/a day) a bit after plaquenil, so that might have something to do with it. Anyway I will continue at least a year with this med.” - Conclusion: Plaquenil seemed to improve redness and flushing of the cheeks somewhat after 4-5 weeks. No problematic side-effects.
Valby also started using mepacrine “I have had pretty good improvement in flushing with clonidine and remeron, so am hoping mepacrine will be the icing on the cake. Just took my first tablet. It is 8:30pm here. Hope it doesn't affect my sleep. My flushing flared up very badly after I tried taking 20mg tabs of Accutane. I can now take 5mg per week with no ill effect though, seems to calm things down if anything.” “I have been flushing since a child. My flushing is severe. I took Accutane for my Rosacea, as prescribed by my derm at 20mg, a couple of months ago and went from flushing over heat, social situations, eating etc, to flushing when waking up, flushing watching TV etc. I also experienced an increase in baseline redness.”
Valby updated: “Have been taking Mepacrine for a week. At first I got a slight headache, which came on about an hour after ingesting and lasted only 30 mins. This has now subsided. All in all I am quite pleased that I am tolerating it. My skin is feeling a bit calmer and I don't seem to be waking up really flushed.”
Valby then updated: “I have been taking mepacrine for approx 4 weeks. It seems to be helping and I have less p&p's. One thing that concerns me is that I have a small black mark under my chin, which I am concerned is pigmentation. It doesn't bother me that much but I am worried about more pigmentation occurring.”
Valby then updated: “I have been taking mepacrine for approx 4 weeks. It seems to be helping and I have less p&p's. One thing that concerns me is that I have a small black mark under my chin, which I am concerned is pigmentation. It doesn't bother me that much but I am worried about more pigmentation occurring.”
-Valby then updated that she was pregnant. “I was taking mepacrine but had to stop. It seemed to be working well for me and my P&P's were reduced and the overall redness and flushing greatly reduced. I was taking 100mg daily. I noticed improvements after 4 weeks.” - Conclusion: mepacrine worked well in reducing facial flushing, redness and burning. Discontinued after pregnancy but option to start using it again (and seemed to have started again after her pregnancy in fact).
Windsor90 tried 400 mg of plaquenil in 2010“I am doing SO well on Plaquenil. My face has calmed down a lot and I don't have nearly the same issues that I did prior to the beginning of when I started taking it. In fact, I was recently diagnosed with Undifferentiated Connective Tissue Disease which is the end result of all of my tests that I mentioned earlier. I knew I had some autoimmune thing going on, but just couldn't figure out what. That is why I started the Plaquenil. Now, I am on it indefinitely. I am back to feeling like my old self again and my quality of life has improved greatly. Plaquenil takes care of all my inflammation and it seems as if my face, capillaries, etc have been positively affected by it. I still watch what I eat as I have always done and I certainly don't test the waters at all with food and beverages, though I still enjoy my chardonnay. My face is pale and my p&p's have subsided finally, which is the exact opposite of how my face has been over the years (burning and purplish red with itchy p&p's). In fact, we were in Florida last week and I forgot to bring a hat with me. So, I walked around outside, in the sunshine and didn't even have one ounce of a problem! I kept waiting and waiting and it (flushing, burning) never happened!! Normally, I could have counted on the grand arrival of a nice p&p. Plaquenil does come with some risks and I have noticed that my vision has blurred some, but only close up (reading). I used to be able to read small print (ie: ingredients on a box) but now have to use reading glasses or readers to be able to see what it says. I also have to see an Opthamologist 2x's a year for a vision field test, because there is a very small risk of Plaquenil affecting peripheral vision permanently. My Opthamologist has been doing these tests for Plaquenil users for 20 years and has never seen anyone's peripheral vision affected by it, which is nice to know. I have been told by several physicians that the benefits far outweigh the risks. And, I risk my connective tissue condition becoming much, much worse if I stop taking the Plaquenil." “It was about 4 weeks into taking it that I noticed my autoimmune issues had greatly improved and now, even more so. Those symptoms were so severe that it was quite noticeable for me. That's about when I started to notice my face was surprisingly improving also, without me doing much (ie: antibiotics). I has all continued to get better."
I asked Windsor90 in an email for an update and if she was still using the plaquenil and received a positive reply, including this practical information: “Yes, I am still taking Plaquenil (generic version) and have noticed a huge improvement in my Rosacea. Hence not being on the forum much. I am taking it due to a rheumatic disease called Undifferentiated Connective Tissue disease which took me 3 years to figure out that I had. It's sort of lupus related. As an unexpected result, my facial issues have nearly cleared up. I have been taking Plaquenil for 2 years (Nov 9th) and every few months will still get one giant "welt" as I call them…. Which takes a long time to go away. But for the most part my face is clear. I still have to watch what I eat and have major reactions to spicy foods, salt.. basically anything that tastes good. By major reaction I mean burning, red face and a nice souvenir of a big welt, which is usually when I get them. (...) I can tell you there are times where I wanted to put a bag over my head and days when I simply did not leave my house because I was so self conscious. I know that is silly to say, since no one probably even noticed what I was so worried about. My face was riddled with p&p's and very red. I really think there is a fine balance of knowing what you can and can't eat/drink and really being strict about it. Also, what products you use on your body/face. I know every time I use different water because I am in a hotel or in a new place, my face breaks out. Different minerals in the water (shower) effect me. As soon as I eat something that contains something hot or spicy I have a problem. So I do my best to avoid it. among other triggers. The added benefit of taking Plaquenil eases the in-betweens. Now I am certain that if I ate what I wanted every day, regardless of Plaquenil, my face would be a mess. My triggers: milk chocolate, processed foods/treats, salt (ie: potato chips), soy sauce, pretzels, crackers, butter (like on toast), red wine and most hard alcohol… I drink some chardonnay (kendall jackson is one I can tolerate). Without droning on, I figured out over time that what I ate affected my flushing and that flushing led to p&p's. So I think it's a big combo platter of being VERY strict about diet plus the anti-inflammatory effects of Plaquenil that have helped me to overcome or actually get a handle on Rosacea…. Because you never really overcome it… You just better understand how not to let it rule your life.” - Conclusion: the plaquenil helped significantly with facial redness, flushing and p&p's is still used to this day with success. Note: there are underlying autoimmune diseases.
Y-gwair also started with plaquenil and used 400 mg a day for 6 weeks, stepping down to 200“Things improved a lot for about 9 months, but have since gone rapidly downhill (I did stop taking for a few weeks when I had swine flu). My eyes got suddenly extremely dry last autumn, since then I've started having severe muscle burning on neck/shoulders and over the last couple of months my face has started flushing, swelling and burning as well. Also lots of shivering fits/ sweating/ fever, nausea, plus weird muscle weakness pins and needles in leg for a while. Ophth. wondered if the eye/face swelling might be due to thyroid antibodies reactivating, but TPO Abs were actually lower than last time, within normal range for first time (effect of Plaquenil perhaps?).” “I really hope I get some answers tomorrow as I've hardly slept for months since this flare started. I can't stand any heat or pressure on my face or eyes, so have to sleep almost sitting up, which helps the fluid drain from my face during sleep. When swollen/oedemic, my face weeps greasy fluid from nasal folds and chin, not sure if it's oil or lymphatic fluid leaking from the sebaceous pores.”
Y-gwair later updates: “The dermatologist's letter came today, she thinks it might be Rosaceous Lymphoedema, as apparently my forehead was swollen too, as well as cheeks and eyes; this seems vanishingly rare as a condition though (and virtually impossible to treat, very worryingly). Face was really wet this morning, leaking lymph-like fluid around eyes, nose and forehead. Also had strange chest sensations when lying down recently, breath was really shallow, wonder if that was some sort of fluid backing up in chest (pleural effusion)? Only time I've ever had anything like this before was when I had glandular fever, when virtually every lymph gland was swollen and fluid seemed to be backing up/leaking on my face. Not sure they think I'm allergic to HCQ (plaquenil). I think it's just doctors' standard response if you mention face swelling (did lots of food specific tests, booked in for more patch testing for chemical sensitivity)."
Y-gwair then updated: “I haven't found that plaquenil does anything for rosacea, I have been taking it a while and my rosacea has just got worse and worse over time. I asked my derm and rheum about it, they both said that Mepacrine is more effective for inflammatory skin problems. Am trying mepacrine (in addition to plaquenil), only about 10 days so far but no change." - Conclusion: Y-gwair seemed to be doing worse on the plaquenil, or at least it did nothing positive.
Nashnurse wrote about plaquenil
Information about the potential retinal side effects of plaquenil
If there is any indication of abnormality in the visual field, or retinal macular areas (such as pigmentary changes, loss of foveal reflex), or any visual symptoms such as light flashes and streaks, which are not fully explainable by difficulties of accommodation or corneal opacities, the drug should be discontinued immediately and the patient closely observed for possible progression. Retinal changes and visual disturbances may progress after stopping. All patients being treated with Hydroxychloroquine should have an initial ophthalmological examination. Ophthalmological testing should be conducted at 6-monthly intervals in patients receiving Hydroxychloroquine at a dose of not more than 6mg per kg body weight per day. Ophthalmological testing should be conducted at 3-4 monthly intervals in the following circumstances. Plaquenil (hydroxychloroquine) is also associated with eye toxicity. Hydroxychloroquine and chloroquine (which is not widely used anymore as a medicine) cause ocular toxicity to various parts of the eye such as the cornea, ciliary body, and retina. Chloroquine can also induce cataract formation; however, no reports of hydroxychloroquine and cataract have been reported.
Y-gwair later updates: “The dermatologist's letter came today, she thinks it might be Rosaceous Lymphoedema, as apparently my forehead was swollen too, as well as cheeks and eyes; this seems vanishingly rare as a condition though (and virtually impossible to treat, very worryingly). Face was really wet this morning, leaking lymph-like fluid around eyes, nose and forehead. Also had strange chest sensations when lying down recently, breath was really shallow, wonder if that was some sort of fluid backing up in chest (pleural effusion)? Only time I've ever had anything like this before was when I had glandular fever, when virtually every lymph gland was swollen and fluid seemed to be backing up/leaking on my face. Not sure they think I'm allergic to HCQ (plaquenil). I think it's just doctors' standard response if you mention face swelling (did lots of food specific tests, booked in for more patch testing for chemical sensitivity)."
Y-gwair then updated: “I haven't found that plaquenil does anything for rosacea, I have been taking it a while and my rosacea has just got worse and worse over time. I asked my derm and rheum about it, they both said that Mepacrine is more effective for inflammatory skin problems. Am trying mepacrine (in addition to plaquenil), only about 10 days so far but no change." - Conclusion: Y-gwair seemed to be doing worse on the plaquenil, or at least it did nothing positive.
Nashnurse wrote about plaquenil"Well dang it, as someone who has lupus and has been on plaquenil for over 10 years... I’m unimpressed. LOL. But who knows, my malar rash/rosacea isn’t extremely prominent so maybe without the med it would be worse? I will say the side effects are negligible. The most common side effect is retinal deposits which can cause vision impairment. But if you’re going to yearly eye exams they can catch it early, you stop the med, and no harm no foul."
Allensworth71 replied: "I've been on it for RA (rheumatoid arthritis) for over a year. I still have the redness, but I can say it hasn't gotten any worse."
Douggx replied: "I'm on plaquenil for 8 months. Flushing improved 50~60%. I still flush but only in specific circumstances that now I consider avoidable. If your Rosacea was triggered by Isotretinoin I strongly recommend a try. I finished the last of the 4 Accutane cycles and started Plaquenil immediately. I had no side effects. I felt better after 3-4 months but it is usually at least 6 months to notice any difference. After stopping plaquenil the benefits continued."
Anonymous wrote: "I’ve just started treatment with plaquenil! My rosacea type 1 came on after Accutane. I found out about it via Rosacea Forum where lots of people with rosacea brought on by Accutane specifically had lots of success. People who had rosacea but didn’t take Accutane didn’t seem to see such drastic results, if any, which is very odd. The threads were around 10 years old before it [antimalarials] was recognised as a potential treatment at all, but there was a UK based dermatologist [I assume dr Chu, Scarlet] who used it off label for their difficult rosacea patients. I recommend checking out related posts in Rosacea Forum if you’re looking for more patient stories! It’s recently been added as a strong recommendation for treatment to Chinese dermatology guidelines for redness and burning symptoms, which is very interesting. However, from what I can see they are basing this recommendation on two very small studies and patient anecdotal evidence. It’s not recognised as a treatment for rosacea anywhere else, and it’s used for rosacea off label, so I don’t think we can say it’s the best - there’s not enough evidence for it at present. I’ve started around 2-3 weeks ago and it’s not meant to have any noticeable effect for at least 2 months, so I don’t have much to say about it sadly. I’ve been flushing and burning way way less since I’ve started taking it, but it can be other factors such as less stress and changes on weather. I want to say it’s made a difference but I’m just not sure considering it’s meant to be such a slow acting drug. For now, I’m staying hopeful! I will add that I’m also on Carvedilol beta blocker which has been great great help but doesn’t get rid of the flushing completely."
Anonymous wrote: "I’ve just started treatment with plaquenil! My rosacea type 1 came on after Accutane. I found out about it via Rosacea Forum where lots of people with rosacea brought on by Accutane specifically had lots of success. People who had rosacea but didn’t take Accutane didn’t seem to see such drastic results, if any, which is very odd. The threads were around 10 years old before it [antimalarials] was recognised as a potential treatment at all, but there was a UK based dermatologist [I assume dr Chu, Scarlet] who used it off label for their difficult rosacea patients. I recommend checking out related posts in Rosacea Forum if you’re looking for more patient stories! It’s recently been added as a strong recommendation for treatment to Chinese dermatology guidelines for redness and burning symptoms, which is very interesting. However, from what I can see they are basing this recommendation on two very small studies and patient anecdotal evidence. It’s not recognised as a treatment for rosacea anywhere else, and it’s used for rosacea off label, so I don’t think we can say it’s the best - there’s not enough evidence for it at present. I’ve started around 2-3 weeks ago and it’s not meant to have any noticeable effect for at least 2 months, so I don’t have much to say about it sadly. I’ve been flushing and burning way way less since I’ve started taking it, but it can be other factors such as less stress and changes on weather. I want to say it’s made a difference but I’m just not sure considering it’s meant to be such a slow acting drug. For now, I’m staying hopeful! I will add that I’m also on Carvedilol beta blocker which has been great great help but doesn’t get rid of the flushing completely."
Anonymous updated: "Unfortunately it didn’t do very much [in the end] and gave me lots of weird side effects like hyperkeratosis on my feet 🥲 Carvedilol beta blocker and a topical anti inflammatory (ivermectin) is the best I’ve been able to come up with so far!"
Sohinee used plaquenil and wrote: "I have been put on Hydroxychloroquine for about 3 months now. While my dermatologist didn't exactly diagnose me with rosacea per se, in fact he confidently disregarded the other dermatologist's diagnosis (they just looked at my flushed cheeks and ears and said that it was rosacea, no tests or any basic examination was done). According to my current dermatologist, the flushing and the burning, tightness and soreness that I experience is majorly a side effect of Ramipril 20 mg that I was taking for 18 years (stopped in Feb 2023). But the thing is, I still experience flushing and the associated symptoms and haven't really noticed a difference even when taking Hydroxychloroquine. I mostly flush in the evenings (idk why) around the same time almost everyday (not counting the other common triggers). So, at this point I am kind of lost here. I can't do anything (can't even eat properly, because just the act of eating triggers flushing). I don't have any permanent redness and once the flushing episode is over, my skin returns back to normal. [..] I have been taking it once daily (200 mg) since mid March. While I don't have persistent erythema, I do find the uncontrollable facial flushing annoying and it hurts my cheeks too. And the med is supposed to strengthen the connective tissue. Haven't seen any drastic difference in the flushing tendency of mine but HCQ is a long-term med, so, if it makes any positive difference, it's going to take time. I am hopeful."
FlanneryOG wrote: "I’m on hydroxychloroquine for inflammatory arthritis, and it hasn’t helped my rosacea at all. In fact, it’s gotten worse lately. I didn’t even know it was used to treat rosacea because it makes you super sensitive to the sun, so I would’ve thought it would make it worse."
AZBreezy wrote: "I have "unspecified autoimmune" and other health issues. I also have rosacea. I take hydroxychloroquine for the autoimmune. I personally did not see any change in my skin conditions after starting this med. I've been taking over 2 years now. If you decide to take it just be aware that it can take 3-6 months of continuous use to see effects. It also takes a very long time to dissipate from your system. So it's more difficult to tell if it's helpful than with other medications that can start working after a few days or weeks."
If there is any indication of abnormality in the visual field, or retinal macular areas (such as pigmentary changes, loss of foveal reflex), or any visual symptoms such as light flashes and streaks, which are not fully explainable by difficulties of accommodation or corneal opacities, the drug should be discontinued immediately and the patient closely observed for possible progression. Retinal changes and visual disturbances may progress after stopping. All patients being treated with Hydroxychloroquine should have an initial ophthalmological examination. Ophthalmological testing should be conducted at 6-monthly intervals in patients receiving Hydroxychloroquine at a dose of not more than 6mg per kg body weight per day. Ophthalmological testing should be conducted at 3-4 monthly intervals in the following circumstances. Plaquenil (hydroxychloroquine) is also associated with eye toxicity. Hydroxychloroquine and chloroquine (which is not widely used anymore as a medicine) cause ocular toxicity to various parts of the eye such as the cornea, ciliary body, and retina. Chloroquine can also induce cataract formation; however, no reports of hydroxychloroquine and cataract have been reported.
Hydroxychloroquine retinopathy
With plaquenil, early toxicity may be asymptomatic. Patients with more advanced stage of toxicity may complain of color vision changes or paracentral scotomas (an island of relative or absolute vision loss within 10° of fixation). The symptoms are often in both eyes. Other symptoms have been described as seeing red objects, missing central vision, having difficulty reading, reduced or blurred vision, glare, flashing lights, and metamorphopsia (a visual defect that causes linear objects, such as lines on a grid, to look curvy or rounded). In keratopathy, patients complain of halos around light and photophobia. Hydroxychloroquine binds to melanin, accumulates in the Retinal pigment epithelium (RPE, which is formed from a single layer of regular polygonal cells arranged at the outermost layer of the retina), and remains there for long periods of time. It is directly toxic to the RPE, causing cellular damage and atrophy. Advanced hydroxychloroquine toxicity presents as a bull's eye maculopathy (when there is a ring of pale-looking damage around a darker area of the macula, which is the part of the retina at the back of the eye).
With plaquenil, early toxicity may be asymptomatic. Patients with more advanced stage of toxicity may complain of color vision changes or paracentral scotomas (an island of relative or absolute vision loss within 10° of fixation). The symptoms are often in both eyes. Other symptoms have been described as seeing red objects, missing central vision, having difficulty reading, reduced or blurred vision, glare, flashing lights, and metamorphopsia (a visual defect that causes linear objects, such as lines on a grid, to look curvy or rounded). In keratopathy, patients complain of halos around light and photophobia. Hydroxychloroquine binds to melanin, accumulates in the Retinal pigment epithelium (RPE, which is formed from a single layer of regular polygonal cells arranged at the outermost layer of the retina), and remains there for long periods of time. It is directly toxic to the RPE, causing cellular damage and atrophy. Advanced hydroxychloroquine toxicity presents as a bull's eye maculopathy (when there is a ring of pale-looking damage around a darker area of the macula, which is the part of the retina at the back of the eye).
Because retinal toxicity is usually irreversible, it is important that people who take plaquenil long term have their eyes checked regularly. When eye toxicity is discovered and at the first signs of retinal toxicity, the patient has to stop taking plaquenil right away to prevent further retinal damage and visual loss. People who take high doses of plaquenil for a long period of time (more than 5 years) run the most risk of developing this adverse effect, especially if they already have renal disease or are also taking the drug tamoxifen. At recommended doses, the risk of toxicity up to 5 years is under 1% and up to 10 years is under 2%, but rises to nearly 20% after 20 years of plaquenil use. However, if a patient has not demonstrated toxicity after the 20-year point, he/she only has a 4% risk of developing toxicity the subsequent year. Keratopathy (disease of the cornea) is rare (<1%) in patients treated with typical doses of hydroxychloroquine.
I used plaquenil myself in 2009 After about a week I noticed no increased redness and flushing, perhaps a little decrease in fact. But I quickly developed very painful, gritty eyes. It quickly got so bad that I was rubbing them for relief and had constant cornea eye pain (I normally don't have sore eyes and never even think of them, as they give me no symptoms normally). I went to see an eye specialist and the ophthalmologist identified the problem to be inflammation of the eye cornea (keratitis) and eyelids (blasfitis or something). I stopped taking the plaquenil and my eyes returned to normal. Over the years I have restarted Plaquenil three times. Leaving plenty of time in between trials (half a year to a year). Every single time the same eye problems started within a month of use (200 mg plaquenil per day). It was really depressing, as my skin seemed to like plaquenil and the redness and flushing were dampened a little bit, I felt. Even after just 4 weeks of plaquenil use. But my eyes started feeling gritty and burning within weeks. I never have painful eyes normally and do not need to use eye lubricants normally. I first continued taking plaquenil, as my skin would look fairly calm (although I still flushed and burned and turned red. Just a little bit less than normal). Then the eye problems just got worse and worse, to the point I had 24/7 pain and trouble getting through the day without constantly soothing them, putting warm compresses on them, lubricating them. Without it helping. My German dermatologist found it rather bizarre and could not believe that plaquenil could cause this so quickly. I wished it was not related but as I say: three trials -> three times pretty bad eye side-effects. Luckily most people I know who take plaquenil on a regular base do not have my experience and do fine.
RedFaced kindly advised me at the time not to worry. And that she also has ocular rosacea and also suffers from blepharitis as well as conjunctivitis. And that Plaquenil does not cause these disorders, nor does it cause keratitis. "I was considering Plaquenil and did a lot of research and reading up on it, but opted for Mepacrine instead which is helping with no notable side effects (knock on wood). Take a break for a few weeks, get a baseline eye exam done by an opthamologist then start the Plaquenil again and be sure to have routine eye exams every 3-4 months. If you do this, there is really no risk because the toxicity that occurs is very slow and gradual and will be detected by an eye exam before you even have any physical symptoms. Any signs of damage is also usually reversible if detected early through an eye exam.” - But unfortunately the eye problems just became too impactful for me to continue with plaquenil. After discontinuing it, every single time I did it still took a few weeks for my eyes to go back to normal, without any more pain or issues. I don't think that I developed eye toxicity so quickly (that would require much more long term use of plaquenil), but something somehow cause my eye cornea to react like this it seems :( I'm a bit gutted about this, as I know various people with very reactive rosacea, who managed to calm their skin down a lot with plaquenil. Without side-effects..
[Photo for illustration]. But it made my face flush extremely severely both times. I would have normal control over the redness and flushing up until that point, using my anti-flushing medication (clonidine, propranolol, xyzal and mirtazapine) and just needing to cool my face and avoid triggers. But as soon as I started mepacrine, the floodgates were opened and my face was throbbing and flushed and hot 24/7. It also took over three weeks for this severe flushing to stop, once I discontinued mepacrine. Probably because it has a very long half-life. When I first tried mepacrine in 2006, I even emailed my dermatologist, Professor Chu about this. He sees good results in his worst flushers and does not know of patients whose rosacea got worse on mepacrine he said. "Dear Dr., I tried the mepacrine two days last week, Friday and Saturday, and my skin reacted very strong: very red face and lots of burning and flushing again. I have my graduation next week, so I stopped taking the mepacrine on saturday, but my face seems to get worse over time.. I wonder if you perhaps know why? It looks almost worse now then the first time you saw me, and I'm getting a little bit concerned. If this reaction is from the mepacrine, shouldn't it calm down by now, five days after taking it? Or might the long half life of the drug play a part? Sorry to bother you already, but, like I said, I'm getting a bit concerned what to do now. best wishes." For some patients mepacrine and plaquenil are a massive help, but as it seems now, they are not for me... A UK friend of mine has had good results from mepacrine for many years for her severe facial flushing. Another friend with rosacea (subtype 1) as well as lupus is doing really well on plaquenil, which is killing the inflammation in her skin. But unfortunately I seem to get worse from it :( As always it is trial and error with rosacea treatments, and what works for one person may not necessarily work for someone else.
Flare in 2006 from the mepacrine, this was during my graduation party (my skin was so hot and sore)
BELOW YOU CAN READ DIARY ENTRIES I MADE AT THE TIME ABOUT MY PLAQUENIL TRIAL
I am currently trying plaquenil again, an antimalarial drug. It has made me less red and flushed already after a few days, although that is not quite the expected timeframe for it to start working (a few months at least is a normal start up time). Downside for me personal is the burning and dry eyes it gives me. But this is a very rare side effect and it usually only occurs after a prolonged time. I don´t understand why it happens immediately for me, it was the same when I tried the medication 2 years ago. But I do believe that anti inflammatories are a major factor in the stride to improve our rosacea. I have also received a bottle of mepacrine pills from my dear friend from the UK, who has good success with it to combat her severe flushing, and I will try it very soon. The plaquenil so far is great, but I worry about my gritty burning eyes. I don´t know anyone from the forum(s) who had this side effect and definitely not within the first year of use, but I already have sensitive eyes and wear contact lenses or glasses. Who knows, I might just the the unlucky one. So mepacrine will be tested soon as well (the plaquenil ran out of expire date so had to be quick with it). I do recommend it to anyone who is severely struggling with vascular rosacea and uncontrolled flushing though, cause like I said, this side effects is very rare. Plaquenil has a very good and long track of helping people with inflammation and autoimmune problems, like lupus or arthritis patients. Current state of the plaquenil experiment is as follows: photos of Day 1 + Day 3:
Day 4, 21 November 2012
Day 5, 22 November 2012
Another terrible night with little sleep, nightmares when I did doze off and very sore eyes. I took my next dose of plaquenil (200 mg tablet again) after breakfast but there is no lubricating my eyes, they keep so painful. So I did what I fear for a long time now.... SHUDDER I just took the feared mepacrine tablet.....The plaquenil really makes me less red already and I was fairly pale this morning (I do look puffy and swollen, sorry for that, it is due to me being too fat, the mirtazapine causing some edema and the rosacea itself making my lymph nodes swell or something like that). A friend is coming over next weekend for a few nights, so I now fear being struck down with
severe flushing from the mepacrine for the next 2 weeks (it has a hugely
long half-life of at least 14 days and in 2006 I had ongoing flushing for over 14 days) but .....at least now my skin is calm and pale and I can see
for real if it gives me horrendous flushing again or not :( Fingers crossed..... The idea behind this is, that at least now I know the antimalarials in general can help my rosacea... But the plaquenil - although favorable on paper as it doesn't have the dye of the mepacrine, and I am fairly allergic to all types of chemical dyes - gives me too much ocular side effects as it is looking now :( Am so afraid that the mepacrine will set everything off again though. Will also try to upload some pictures of my graduation party back in 2006, when I was almost fluorescent from the flushing and redness. Right after trying mepacrine. Really struggled myself through that day and evening. Fingers crossed that it won't happen again this time! Although I am not sure why it wouldn't, from a logical point of view, but who knows.. Day 5:
Day 6, 23 November 2012
Yesterday went fairly ok. I took the plaquenil pill around 10am and then decided to give the mepacrine a try as well around noon. And took 100 mg of mepacrine. I noticed more heat sensations and some burning crawling up my face, but when looking in the mirror it wasn't looking too red. But I did feel a headache coming up and felt wired with energy, despite being tired from the ongoing lack of sleep (another bad night). Last night was ok, I was rosy but nothing too bad and no flushing attacks. Last night was more lying awake, intermittent nightmares and awake again. The picture I took will show it, my apologies, I feel like a zombie. Still using my small fan parts of the day and trying to stay away from pro-inflammatory foods. I try to walk a few hours at the end of the day, cause I found that exercise makes me less red and flushed the next day. Anyway, I will continue with the mepacrine, another 100 mg when I finish typing here and then fingers crossed again that I won't have a delayed adverse response today or tomorrow... I do fluctuate between being rather pale to red cheeks again during the day, so these early morning pictures are just a snapped moment, but I guess it could have been much much worse in terms of redness and inflammation. Day 6: Getting more red and hot in my face after my next mepacrine dose:
Third day on the mepacrine today, and I didn't take the plaquenil yesterday or today, in the hope that my eyes will calm down again. Yesterday I felt more hot and burned up in my face and I think I was a bit more red as well. Not major and not as dramatic as I had feared though, so hurray for that! But I clearly felt less hot and looked less heated up on the second and third days of the plaquenil trial. Not good news for the mepacrine.. When I took my next dose yesterday around noon, I felt horrible soon afterwards; extremely sluggish and tired, dizzy, apathetic, flu like and down. The plaquenil had exactly the opposite effect; uplifting, gave me energy and I even felt upbeat (gosh that felt awkward ;) I felt even too tired to have my afternoon walk. Made a sad attempt but turned around back home when I had reached the end of my street. Depressing. Some pics of today, I have a few small p&p's as well, but nothing really noteworthy. But definitely more general redness and I am more flushy. Slept bad again, can't believe it almost given the usual knock-out blow that the mirtazapine has. But I tend to wake up at least 5 times at night now, have wicked nasty dreams and wake up totally exhausted. I wouldn't mind putting up with that for some more time if my face was pale at the same time, but it's not. So I am not on the right road it seems, but I will give the mepacrine a few more days to start working right. If not, I will sit out the 2 weeks half time period and switch back to the plaquenil again. I have an appointment with my dermatologist on the 5th of December so I will explain the whole experiment to him and hope that he either has a solution for the burning eye side effect of the plaq. or an alternative anti inflammatory medication. The last time he wanted to put me on low dose doxycycline however, and that does absolutely nothing for my vascular rosacea, apart from giving me more bowel problems and a much redder face. So I sure hope he can wizz something better out of his black hat this time :) Fingers crossed for the mepacrine still however, and also still fingers crossed for the plaquenil as well. I know that they are not supposed to work within the first weeks (month even) of use, but I am mainly looking for the one that isn’t making me worse right now. Negative responses on medication usually manifest themselves fairly quickly with my absurdly sensitive facial skin, so as long as I am not deteriorating too much, I can sit the long waiting time out.
Day 8, 25 November 2012Fourth day on the mepacrine today. I am not sure if I am getting more or less red. I did have some break outs, very minor. But I usually don't get them. Will continue with 100 mg at night for another week and see if things improve. I did spend last evening with friends and it was cool inside, but I managed to stay unflushed without a fan all through the evening and movie watching, so I guess that is a good sign. On the other hand, I do think I am maybe slightly more red. Slept slightly better, but still have nightmares and a few times of waking up in the middle of the night. Tonight (still 25th of November) I have more redness and some flushing and burning. I am having the feeling that I am not doing much better the last few days on the mepacrine. I know that it will take more time to start working properly, but with the plaquenil I was really pale from the 2nd day onward and with the mepacrine it is actually going backwards :( What to do... Best to continue I guess and give it more time. Getting impatient howeverrr.... I rather want to use the med that gives most (immediate) effect, but I might be really silly for breaking off the mepacrine trial period, then going back to the plaquenil to find that my eyes are getting worse again. The last days they have stabilized, maybe improved slightly but they still burn. But the plaquenil will stay a long time in your system, some information says a month! So they eyes should only get really better with time I assume.
Day 9, 26 November 2012Fifth day on the mepacrine today. I am fairly sure by now that I am getting more red while on this med. However, I don't flush much more. Although I do feel much more hot and burny now, but I'm not having those full on flushes the past week. I think the general redness has gone up though and I have a bit of a minor rashy-like break out here and there. I see this getting slightly worse by the day, so I guess I will switch to the plaquenil again :( Sorry that this isn't much of a full proof trial!! With me being so wishy-washy and not at all steadfast. This is not how one should trial a new med. I am far too easily discouraged, but it has also to do with various appointments and important things I need to do these next weeks, making me more inclined to just stop with the med when I feel it makes something worse than normal.. I will just see how the plaquenil does for the upcoming week and if there is a possibility to prevent the eye soreness by using a lot of artificial tear drops preventively and maybe hope that the eye issue is temporary? I will discuss it on the 5th with my derm and see what he comes up with; either to combat the eye soreness or a completely new anti-inflammatory medication perhaps. The sore stomach now and again from the diclofenac never bothered me much but painful eyes are very annoying I find every time again. Been walking all afternoon and got caught in some rain at some point. Was tired all evening but made beautiful spooky pictures and felt good as usual after the exercise. Starting to get winter hands too again.
Day 12, 29 November 2012I had a few days in a row of increased redness and flushing. I really felt that my skin was getting worse with the days; more red, more flushed and more burning. So I stopped with the mepacrine after a week and started immediately with the plaquenil again. I am still more red than usual today. I guess it takes another 14 days at least before half of the 700 mg of mepacrine I took so far is out of my system. So uhm.. does that mean that it will take a month to have 25% left in my system and 2 months for 6,2% to be still there? I surely hope I won't respond to it anymore by then. My eyes are sore again but I keep them lubricated with my eye drops and hope for the best. Will see the derm on Wednesday, so more information hopefully then. Here are some pics of today when I cooled down a bit after waking up flushing. Been sleeping extremely poorly again but I am sure that will improve with time. The weather is mighty cold as well and that doesn't help either to keep the redness down. I try to keep the temperature around 15 degrees in the house, maybe 16 in the evening, but I am outside as well and it just stirs up my rosacea and inflammation incredibly. Not much I can do about that, apart from wishing for a quick and warm spring. My friends in Australia complained today about 40 degrees in Melbourne and over 30 in Sydney.. Not good either I suppose.
Burned all night and am pretty red and flushed today. Not feeling good. Eyes are sore, skin is mildly breaking out, face is throbbing and hot, have to entertain friends all weekend and feeling in pain. Waking up flushed and with a badly burning face is about the worst waking up I can think of (well ok, not the worst then, but not the best either). I am seriously in limbo whether to stop all antimalarials till my face is calmed down again, and then try the plaquenil again, OR to continue the plaquenil and hope that after 3 weeks the mepacrine is out of my system sortof and the plaquenil starts working. But I don't like having several things at the same time 'at work', cause it makes it so hard to distinguish what is doing what. :( Oh and did I say my face is swollen too? As usual? But after a flushed night it's even worse :'( Enough hamster faced pitty partying, I'm going out now.
Day 14, December 1st 2012
Having a hell of a time. Totally flushed and burned up all night and day and staying with friends for the weekend, so am almost forced to sit in warm rooms, go out on days away, dinners out even. Grrrrr, feeling totally wrecked and awful and rather just lie in bed with the fan on and cold packs for the next 2 weeks. Feeling also disappointed that the meds seem to make matters worse, the mepacrine at least for sure (plaquenil seemed to do ok the first days so that verdict is still open). Not sure the pictures reflect the amount of pain and heat and flushing well but can't be bothered taking any more and need to be social in town now :'( Walking around with cold packs on my cheeks and thank god it is December and cold as ** here, so at least being outside should give some relief (hope..). I do have to say that watching someone taking care of a toddler is quite daunting.. I really don't see how I could do that, constant care, attention etc with a face like mine. I mean, I am pretty good with kids when my face is keeping it's calm, but if not (at least half of the time if not more) I just want to sit in a cold room with a fan on and work or books at least half of the day. And in a way this bloody rosacea feels like a 'child' in it's own right, demanding things from me constantly like time, attention, rest, needing pampering, sacrifices and so on. Quite an ungrateful stubborn kid though, since I get little back. Not even cuddles to make up for it all or a bit of fun. I'm sure when you have kids you just get on with it though. Might even be good for me, a bit of real work and worthy stuff to put my energy in instead of a silly skin condition :) Oh and am almost finished harvesting all the mepacrine/plaquenil forum reviews and have been making a summary of the results, but hard to find the time to finish it, but it's almost ready and will post it in a new thread as this one hardly updates/loads anymore (must have become too big perhaps?). Have a great weekend.
Update Managed to have a good time, laugh, be jolly (or rather act it) and make everybody feel good but I am burned up and more red than in the pictures, way more red by now (night). Feel like it was in 2006, very very angry skin and no way to calm it down. Makes me feel pretty powerless and defeated. I am pretty sure by now this is the same thing going on as in 2006, triggered by something in the mepacrine. I am very sensitive to chemical dyes and I
have a gut feeling that the dye in the mepacrine sets me off, again. I
had it before in 2006 and the type of flushing and redness it gives me now again is
too much to continue. The risk is that with a month long trial
period, I am needing another 6 months to get the stuff completely out of
my system and I cant handle this severe rosacea for that long if it
turns out that it doesn't help me after one month. Plaquenil on the other
hand seemed to help more but I am so red and flushed and sore right now
that I decided to let it all run it's course and hope in time it will
calm down again and once it is calm I can try the plaquenil again (when I was in Paris a little while ago my skin was way calmer, and also in the weeks leading up to the medication trial. I looked into other triggers that could have caused this but I didn't do, eat or experience anything extraordinary or out of order, so I have to blame it on the drugs). These drugs have such a long half life, that it's not a good med to
experiment with when you have a ultra sensitive and reactive case of
rosacea, it's a sad conclusion but the only one I can make right now. I
just hope it wont take a month or more for this inferno to stop :( I plan to see my derm on Wednesday, find out if there is another anti inflammatory that might help my rosacea that is not an antibiotic nor an antimalarial and if he doesn't have anything else (which I suspect he will say) I might have to wait till things calm down again and then I might start the plaquenil again. Only 2 more days to go.. I am actually glad in a way that I have this distraction of friends, it is fun, but I wished I could just pick my own hours of being social and joining them, when my flushing is having a short break.
Day 15, 2 December 2012
Red, red and more red. Still having a burning face. Not much else to note here. Looking as bad as I feel clearly.
Day 16, 3 December 2012
No change in the situation; red and flushed. Pics were taken when it calmed down as much as I could manage to bring it down, but large part of the day it was a few factors more red and swollen :( Been here before so keeping my cool and just sighing it off and sitting it out again. Another week to go at least. Still on normal medication (clonidine, propranolol, mirtazapine 15 mg) and just added diclofenac tonight, 100 mg. Hope it helps. Had a good weekend however, despite the fan on when possible and cold packs. Happy days regardless of the failed medication trial. That would have been unimaginable 6 years ago, so I see some improvement :)
Day 37 since the
antimalarial trial started, 24 December 2012
It took really about 16 days since stopping the mepacrine for the bad flushing and redness to calm down again. No more mepacrine, although I like to keep stressing that there are a few people I know, who are having a lot less rosacea symptoms because they take mepacrine. But one size doesn't fit all unfortunately. I stayed off the antimalarial pills for about 2 weeks now and visited my eye doctor in the mean time to see if the eye burning was only something I felt, or if there was actually something detectable in my eye. He did a thorough test and made pictures of my eyes, but couldn't see anything wrong. Apart from eye dryness and contact lenses that weren't properly cleaned lately (hanging my head in shame). He gave me good eye drops for lubrication, that are hyposensitive and my eyes are doing a bit better now. I started again with half a pill of plaquenil daily since last Friday. Eyes are not painful anymore now and I seem a bit less red in the face. Will continue with this for as long as I can and hopefully for at least 3 months, so the plaquenil is at an effective cumulative dose by then. Fingers crossed! Good luck to everybody dealing with Christmas.
Update: Still on the plaquenil and my skin seems to improve slightly, but my eyes are very dry and gritty and painful again. It's a massive bummer and I wished they were fine. I am using all types of eye lubrication and lost oversight of what is causing what now. I will have my eyes checked next week again, to see if it is just how I feel or if there is something going on. I also did this a month ago, when I had stopped the plaquenil, but still had some eye soreness and burning and they couldn't find anything wrong so it might be interesting to see if there is anything they can detect now, that I am back on it and having active eye issues so to speak. I hope it will pass with time as I do think the plaquenil is helping me to a degree. Eyes are very very sore today.
End conclusion
More links:
http://www.rosaceagroup.org/The_Rosacea_Forum/showthread.php?25405-Questions-about-Plaquenil-Mepacrine-Flushing
http://www.rosaceagroup.org/The_Rosacea_Forum/showthread.php?25405-Questions-about-Plaquenil-Mepacrine-Flushing
http://www.rosaceagroup.org/The_Rosacea_Forum/showthread.php?22948-My-Rheumatologist-is-letting-me-try-Mepacrine!/page3
http://www.rosaceagroup.org/The_Rosacea_Forum/showthread.php?22074-Plaquenil-users-What-dose-are-you-taking
http://www.rosaceagroup.org/The_Rosacea_Forum/showthread.php?22775-To-anyone-that-s-been-prescribed-Mepacrine-Plaquenil-for-their-Rosacea
http://www.rosaceagroup.org/The_Rosacea_Forum/showthread.php?19279-Melanin-build-up-behind-the-eyes-with-Plaquenil
http://www.rosaceagroup.org/The_Rosacea_Forum/showthread.php?9064-The-Biggest-Treatment-Secret-in-Rosacea
https://rosaceagroup.org/The_Rosacea_Forum/showthread.php?9350-Plaquenil
http://www.rosaceagroup.org/The_Rosacea_Forum/showthread.php?18330-My-flushing-is-almost-cured-Mepacrine/page41
Day 14, December 1st 2012Having a hell of a time. Totally flushed and burned up all night and day and staying with friends for the weekend, so am almost forced to sit in warm rooms, go out on days away, dinners out even. Grrrrr, feeling totally wrecked and awful and rather just lie in bed with the fan on and cold packs for the next 2 weeks. Feeling also disappointed that the meds seem to make matters worse, the mepacrine at least for sure (plaquenil seemed to do ok the first days so that verdict is still open). Not sure the pictures reflect the amount of pain and heat and flushing well but can't be bothered taking any more and need to be social in town now :'( Walking around with cold packs on my cheeks and thank god it is December and cold as ** here, so at least being outside should give some relief (hope..). I do have to say that watching someone taking care of a toddler is quite daunting.. I really don't see how I could do that, constant care, attention etc with a face like mine. I mean, I am pretty good with kids when my face is keeping it's calm, but if not (at least half of the time if not more) I just want to sit in a cold room with a fan on and work or books at least half of the day. And in a way this bloody rosacea feels like a 'child' in it's own right, demanding things from me constantly like time, attention, rest, needing pampering, sacrifices and so on. Quite an ungrateful stubborn kid though, since I get little back. Not even cuddles to make up for it all or a bit of fun. I'm sure when you have kids you just get on with it though. Might even be good for me, a bit of real work and worthy stuff to put my energy in instead of a silly skin condition :) Oh and am almost finished harvesting all the mepacrine/plaquenil forum reviews and have been making a summary of the results, but hard to find the time to finish it, but it's almost ready and will post it in a new thread as this one hardly updates/loads anymore (must have become too big perhaps?). Have a great weekend.
Update Managed to have a good time, laugh, be jolly (or rather act it) and make everybody feel good but I am burned up and more red than in the pictures, way more red by now (night). Feel like it was in 2006, very very angry skin and no way to calm it down. Makes me feel pretty powerless and defeated. I am pretty sure by now this is the same thing going on as in 2006, triggered by something in the mepacrine. I am very sensitive to chemical dyes and I
have a gut feeling that the dye in the mepacrine sets me off, again. I
had it before in 2006 and the type of flushing and redness it gives me now again is
too much to continue. The risk is that with a month long trial
period, I am needing another 6 months to get the stuff completely out of
my system and I cant handle this severe rosacea for that long if it
turns out that it doesn't help me after one month. Plaquenil on the other
hand seemed to help more but I am so red and flushed and sore right now
that I decided to let it all run it's course and hope in time it will
calm down again and once it is calm I can try the plaquenil again (when I was in Paris a little while ago my skin was way calmer, and also in the weeks leading up to the medication trial. I looked into other triggers that could have caused this but I didn't do, eat or experience anything extraordinary or out of order, so I have to blame it on the drugs). These drugs have such a long half life, that it's not a good med to
experiment with when you have a ultra sensitive and reactive case of
rosacea, it's a sad conclusion but the only one I can make right now. I
just hope it wont take a month or more for this inferno to stop :( I plan to see my derm on Wednesday, find out if there is another anti inflammatory that might help my rosacea that is not an antibiotic nor an antimalarial and if he doesn't have anything else (which I suspect he will say) I might have to wait till things calm down again and then I might start the plaquenil again. Only 2 more days to go.. I am actually glad in a way that I have this distraction of friends, it is fun, but I wished I could just pick my own hours of being social and joining them, when my flushing is having a short break.
Day 15, 2 December 2012
Red, red and more red. Still having a burning face. Not much else to note here. Looking as bad as I feel clearly.
Day 16, 3 December 2012
No change in the situation; red and flushed. Pics were taken when it calmed down as much as I could manage to bring it down, but large part of the day it was a few factors more red and swollen :( Been here before so keeping my cool and just sighing it off and sitting it out again. Another week to go at least. Still on normal medication (clonidine, propranolol, mirtazapine 15 mg) and just added diclofenac tonight, 100 mg. Hope it helps. Had a good weekend however, despite the fan on when possible and cold packs. Happy days regardless of the failed medication trial. That would have been unimaginable 6 years ago, so I see some improvement :)
Day 18 since the antimalarial trial started, 5th December 2012
Starting to really regret
my decision to use the mepacrine. Still flushed all day and night and no sign of
it stopping :( It is starting to really affect my mood. Waking up, burned up,
don't want to get up, then first thing I do when I am actually up is cooling
with a cold pack until the worst subsides, leaving just a red basic redness
and swelling and burning. Then trying to do some work or make myself useful at
least. Gosh it is long ago that I had such
an intermittent period of the same flaring constantly. Anyway, I saw my derm today. Really
didn't feel like going, but I guess it was good that I went after all. Nicest of
chaps -well, an older German guy actually- and we discussed the plaquenil and
mepacrine. I told him I used both again, how I felt that the plaquenil didn't
make things worse and perhaps already improved matters and how the mepacrine
just caused worsening again. That the plaquenil makes my eyes burn and
irritated pretty much from day one and if he knows of another anti-inflammatory
that I can use? Nope. The thing everyone is
waiting for is a really good one that is useful for rosacea. He finds low dose
doxycycline the most effective in suppressing the rosacea redness he said. But
I get more red and flushed from all the tetracycline antibiotics, especially doxy. I tried
doxy, minocycline, metronidazole. Doc said that minocycline is out of the race
for some time now and that it proved to be not suitable for rosacea after all.
He wanted to try metronidazole again if I wanted to, but nope, I had my fair
share of long term antibiotic use and they didn't help and made matters worse. Including causing me inflammatory bowel disease and IBS. No thanks. (For
my case anyway). I explained how the plaquenil makes my eye burn and irritated
almost immediately after starting the meds (after a few days basically) and he
asked what eye doc I saw for it and what the diagnosis was. Last time I had it
checked the doc named it keratitis and blepharitis. My derm said that serious
eye problems from plaquenil only happen after long term use at high doses. Not
the low dose I took and that he prescribes, and he also said he hasn't seen one
of his patients yet getting the toxic eye problems from plaquenil. However, it
could be that the plaquenil does stir up the keratitis he said, and he suggests
now starting again on a lower dose; 100 mg a day or one pill (200 mg) every
other day. Then see how that goes. I also had special allergy suppressing eye
drops prescribed. I do think I want to give my eyes some slack for now, since
they are still very painful and burning. But I have a prescription for another
6 months of plaquenil. He said that I should take
into account that this keratitis is a common thing with rosaceans and that in
ten years time I may be dealing with it even without any triggering
medications that are stirring it up. That is just the thing that happens when
you flush a lot and have the inflammation problem in the face according to him.
Hmmm great..
So... I
want to have the mepacrine out of my system first, but it has a half life of 5-14
days. Make that 14 days for me with a metabolism that is almost at a standstill
thanks to the lovely mirtazapine.. Have been reading up about ways to
speed the elimination half life up, and only found this. Gives good
information about the principle of the half life theory too, but no suggestions
how to theoretical speed the elimination of the drug up. Somewhere else I read
that acidifying the urine would be helpful for this: "The acidity
of urine, which is affected by diet, drugs, and kidney disorders, can affect
the rate at which the kidneys excrete some drugs. In the treatment of poisoning
with some drugs, the acidity of the urine is changed by giving antacids (such
as sodium bicarbonate) or acidic substances (such as ammonium chloride) orally
to speed up the excretion of the drug. The kidneys' ability
to excrete drugs also depends on urine flow, blood flow through the kidneys,
and the condition of the kidneys. Kidney function can be impaired by many
disorders (especially high blood pressure, diabetes, and recurring kidney
infections), by exposure to high levels of toxic chemicals, and by age-related
changes." Link.
It took really about 16 days since stopping the mepacrine for the bad flushing and redness to calm down again. No more mepacrine, although I like to keep stressing that there are a few people I know, who are having a lot less rosacea symptoms because they take mepacrine. But one size doesn't fit all unfortunately. I stayed off the antimalarial pills for about 2 weeks now and visited my eye doctor in the mean time to see if the eye burning was only something I felt, or if there was actually something detectable in my eye. He did a thorough test and made pictures of my eyes, but couldn't see anything wrong. Apart from eye dryness and contact lenses that weren't properly cleaned lately (hanging my head in shame). He gave me good eye drops for lubrication, that are hyposensitive and my eyes are doing a bit better now. I started again with half a pill of plaquenil daily since last Friday. Eyes are not painful anymore now and I seem a bit less red in the face. Will continue with this for as long as I can and hopefully for at least 3 months, so the plaquenil is at an effective cumulative dose by then. Fingers crossed! Good luck to everybody dealing with Christmas.
Update: Still on the plaquenil and my skin seems to improve slightly, but my eyes are very dry and gritty and painful again. It's a massive bummer and I wished they were fine. I am using all types of eye lubrication and lost oversight of what is causing what now. I will have my eyes checked next week again, to see if it is just how I feel or if there is something going on. I also did this a month ago, when I had stopped the plaquenil, but still had some eye soreness and burning and they couldn't find anything wrong so it might be interesting to see if there is anything they can detect now, that I am back on it and having active eye issues so to speak. I hope it will pass with time as I do think the plaquenil is helping me to a degree. Eyes are very very sore today.
End conclusionIn the end I stopped plaquenil the 3rd time round as well.. I could barely open my eyes after some weeks, they were so painful. Eye doctor detected keratitis again and irritation of the cornea. I never normally have this, aside from having had maybe one time a case of blepharitis. I do get the feeling however that more people had increased symptoms from the mepacrine than from the plaquenil overall. And that plaquenil can be very effective in suppressing skin inflammation, and as such can reduce rosacea symptoms. Same for mepacrine, but not everybody likes the yellow dye aspect of that drug. The main side effects that were mentioned with mepacrine were yellowing of the skin, more energy and sleeping problems and I would say half of the users complained of no improvement or worsening of symptoms (flushing, burning, redness). The other half seemed to be really improving, with Lamarr and Halfpipe as the best responders. They did have underlying autoimmune diseases either as far as I can tell. But perhaps the fact that they used accutane prior to developing rosacea is of some importance here, as it has been claimed that the antimalarials have the best track record with accutane-induced rosacea sufferers. Plaquenil has a risk attached of eye problems as a side-effect (halo's, blind spots, burning etc), but this is mainly seen after long-term and high dose usage. I did get the overall impression that more people found improvement of their flushing burning and redness from this specific antimalarial. Downside is also that plaquenil takes a bit longer than the mepacrine to build up to therapeutic levels and to start working.
http://www.rosaceagroup.org/The_Rosacea_Forum/showthread.php?25405-Questions-about-Plaquenil-Mepacrine-Flushing
http://www.rosaceagroup.org/The_Rosacea_Forum/showthread.php?18330-My-flushing-is-almost-cured-Mepacrine&p=220603#post220603
https://rosaceagroup.org/The_Rosacea_Forum/showthread.php?22613-Photoallergy
https://rosaceagroup.org/The_Rosacea_Forum/showthread.php?22631-Plaquenil
http://www.rosaceagroup.org/The_Rosacea_Forum/showthread.php?24802-Plaquenil-vs-Mepacrinehttps://rosaceagroup.org/The_Rosacea_Forum/showthread.php?22613-Photoallergy
https://rosaceagroup.org/The_Rosacea_Forum/showthread.php?22631-Plaquenil
http://www.rosaceagroup.org/The_Rosacea_Forum/showthread.php?25405-Questions-about-Plaquenil-Mepacrine-Flushing
http://www.rosaceagroup.org/The_Rosacea_Forum/showthread.php?22948-My-Rheumatologist-is-letting-me-try-Mepacrine!/page3
http://www.rosaceagroup.org/The_Rosacea_Forum/showthread.php?22074-Plaquenil-users-What-dose-are-you-taking
http://www.rosaceagroup.org/The_Rosacea_Forum/showthread.php?22775-To-anyone-that-s-been-prescribed-Mepacrine-Plaquenil-for-their-Rosacea
http://www.rosaceagroup.org/The_Rosacea_Forum/showthread.php?19279-Melanin-build-up-behind-the-eyes-with-Plaquenil
http://www.rosaceagroup.org/The_Rosacea_Forum/showthread.php?9064-The-Biggest-Treatment-Secret-in-Rosacea
https://rosaceagroup.org/The_Rosacea_Forum/showthread.php?9350-Plaquenil
http://www.rosaceagroup.org/The_Rosacea_Forum/showthread.php?18330-My-flushing-is-almost-cured-Mepacrine/page41
Thank you very much Leonard.
ReplyDeleteYou're a true hero to people worldwide and you have been for years. I can't thank you enough.
ReplyDeleteI'm blushing now, but thanks!
ReplyDelete