20 November, 2012

The antimalarials mepacrine and plaquenil for rosacea

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. Here is a bit more information on this category of medication:



*Antibiotics (Oracea, tetracyclines, macrolides) Because these meds make me personally a lot more red and are mainly effective for the p&p, subtype 2, although some people with general redness and flushing sometimes also report success. I won't discuss them here but I will make a separate post about them soon. They can help some people with rosacea, because these drugs have anti inflammatory properties. Unfortunately, for some they come with side effects, especially if you take them long term. And they don't typically help with facial flushing, and not always with the erythema redness either. 

*NSAID´s
*anti-malarials
*natural anti inflammatory herbs, spices etc
*low level red light therapy
*Potential help (but very serious medication with worse than average side effect profiles):
-Remicade
-Methotrexate
-Mycophenolate



Apart from this, there is medication that can diminish facial flushing: clonidine, beta-blockers (like propranolol/ carvedilol), antidepressants (like mirtazapine/celexa/zoloft) and antihistamines like Xyzal. See for more information on these anti flushing medication options my blog post about it. 



In this blogpost I will try to explain some more about the  
antimalarials mepacrine and plaquenil, and their potential role as rosacea treatment. Then I will update on my own trials with both mepacrine and plaquenil.


Plaquenil and mepacrine are antimalarial drugs which  are widely used and have been prescribed the last decades by immunologists, internists and dermatologists to treat the inflammation symptoms of the auto-immune diseases lupus, SLE and sometimes artritis and rheuma. 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 haven't included patient reports from these types of forums. There are countless reports of both meds helping with lupus symptoms, arthritis and SLE, and also with other inflammatory auto-immune diseases out there for anyone to look up. I chose to focus only on it's effects in rosacea symptoms, primarily flushing, burning and redness since there is very little information out there on this topic. General information on both meds in relation to other auto-immune conditions - like lupus-:

LINK FOR MORE INFO
LINK FOR MORE INFO

Both types of medication have incidentally been prescribed for rosacea, especially for the flushing symptom and to decrease erythema and burning. Several dermatologists have used both meds in rosacea, although this is no widespread treatment.There is some anecdotal medical information about this, and it seems it has been most used by dermatologists in Scandinavia and north-western Europe. The medical articles that have been traced, date from the 60’s and both the antimalarial drugs mepacrine and plaquenil were discussed. A few of those articles are:

[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.


My own dermatologist in London prescribes both mepacrine or plaquenil in some situations, when dealing with rosacea patients who have severe symptoms and who do not respond well enough to other anti flushing/redness medication.



One of the earliest articles found is this :

Mepacrine and chloroquine (plaquenil) in the treatment of rosacea (December 1955). (LINK)


It is about 6 pages. Here are some of the highlights:
"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 designes 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 maximim dose 10 g.
Of the 57 patients, 18 became symptom free-infiltrations, pustules and redness disappearing. Relating the therapeutic results to the reported provactive effect of sunlight, we find that 23 patients who reported exacberation 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 deratitis of a seborrhoeic type - both at the end of 2 months treatment. In these cases the disease was of 5 and 7 more hten 7 months stadning respectively.


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 replapsed 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 definitly ascertained by te patient himself, as the susceptibility of the skin to quantitative irradiation does not appear to afford any guidance."


The results of these small studies weren’t too favorable for mepacrine and plaquenil, 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 auto-immune controlled condition, this choice of focus is a little bit narrow. I believe that the mechanism of action of the antimalarials is more based on the anti-inflammatory and immunosuppressive actions of the antimalarials than on its ability to turn around light sensitivity.




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.


In February 2006 Banshee started an interesting discussion about plaquenil versus rosacea in the following thread
She stated that she liked to hear about people’s experiences with plaquenil on the rosacea forum. She 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)
-     *acts as an anti-inflammatory
-     *acts as an anti-oxidant

Banshee also speculated that because it is an anti-malarial and lowers fever, it could also have some effect on the thermo-neutral zone like clonidine does. The dermatologist didn’t know about that. Other questions B. posed were:


1. “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 OR as well? Dryness et al.”
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.”



Later Banshee also found out that plaquenil is an immunosuppressant. “Same thing as steroids however, I asked what distinguishes it & basically steroids have more side effects because they work on general receptors vs specific ones. In other words plaquenil acts on more particular things such as neutrophil & basophil expression, disrupting the domino effect if you will at a more pntd level.
That's where a lightbulb went off...I had been trying to figure out what possible mechanism of action this drug may have for rosacea aside from being partially anti-inflammatory (& also what made it more worthwhile than say antibiotics). I had read I believe a NRS study that there was over-expression of neutrophils in rosacea & Dr. Nase had mentioned how anti-biotics disrupt them. Not in making rosacea auto-immune, but rather a normal typical process gone out of control & working against us.
In addition, I asked if perhaps given P was an anti-malarial if it had any effect on fevers. Possibly working on the thermo-neutral zone like clonidine. The pharmacist did not believe so, but it is also classified as anti-rheumatic which obviously rheumatoid arthritis is another inflammatory condition w/the body working against itself. Knowing now what class of drug Plaquenil is I'm not too keen on taking immunosuppressants. None the less it explains why it may be a bit more powerful than antibiotics in disrupting the inflammatory cycle, while not being as detrimental as steroids.”  



A lot of questions were posed and a lot of forum members responded in this large thread. 
Redhotoz 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/ 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.” Red 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 auto-immune problem. For many that manifests itself in inflammation symptoms (the immune system ‘detecting’  danger where there is no danger and sending pro-inflammaory substances to it) in different organs. Many rosaceans have some form of bowel problems (and some believe they are the source of all the trouble) or other forms of inflammatory problems apart from the rosacea. 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 would get much less and bothersome as well. So, I hope the plaquenil/mepacrine can help with just that.

  
I will make a summary of the forum members that I traced who used or are using plaquenil or mepacrine, and who wrote updates about it. I will order them alphabetically and will later try to make an evaluation of the outcomes. Here are some reports:

Denisfh wrote: "I've been away from the forums for a while and just found this thread. 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 has been used here. Patient stopped taking it. 

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 Dougs face a bit calmer. I haven't found more updates from Doug but am waiting an email response from him to give an update.   

Grace123 experienced increased flushing while on plaquenil: "My dermatologist prescribed Plaquenil for my Rosacea. I have been taking it for 6 days bu no improvement has been noticed. However, I experienced increased flushing because of this medicine. I wonder whether I should continue or not." She later noticed increased flushing while on plaquenil. Despite her doctor increasing her dose from 400 mg a day to 600 mg, around week 3. 
-Then her latest update on the plaquenil reads: "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 fe weeks the flushing was much worse - yet after 4-5 weeks the flushing began to noticably 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 leats try it. regarding the side effects - most people ar 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 anti-malarials 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 mentions dramatic improvement on his flushing and rednessalso of his hands and he developed his symptoms after accutane use. He later updates: "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 alot 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: Halfpipe wrote about initial increase of facial flushing and redness in earlier posts but later updates that he has significant improvement after the 5 week mark of using mepacrine, to the point of almost a pre-rosacea state.  


iVan lso used the 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 bnot 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 hgandle the sun exposure better than normal. Maybe the mepacrine helps that."
-Then surprisingly he updates: "I've been taking it daily for almosy 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 untill 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: after a hesitatingly positive report there came a surprising twist and patient reported int he end that flushing and burning had not improved and seemed to have worsened in fact from mepacrine. Side effect was yellow skin. 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 perm red. 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 fake tan. The redness of my face looks like that phase of sunburn where its half burn/half tan. I have had several people complementing 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 make up.” Have not found more updates yet but emailed j40 for more information. Conclusion: less burning and less deep blushing while on mepacrine. Slight tan. Still redness however.  


Lamarr reported fantastic results after starting with the mepacrineAfter 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 anti malarials 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 anti malarial for reactove arthritis (on my recommandation) and it is working better than sulfazaline, 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: Lamarr was one of the first to report dramatic improvement of his rosacea symptoms while on mepacrine. Many patients followed him in trials as an effect. His initial increase of flushing, burning and redness significantly improved after the 5 week mark, to the point of almost no rosacea symptoms. Note: case of underlying auto-immune diseases and rosacea as a result of accutane use.  


Mutantfrog also 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/"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 2-3mo 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!).”  However, overall Mutantfrog sees improvement on the inflammation levels. 

Mutantfrogs last update 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 Plaquneil 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 Skin: I still have some DM type rashes and other things on my hands and arms. And I get hives periodically in weird places - never for more than a few minutes - this is probably from the plaquneil (but not an allergic reaction, apparently). At any rate, they're easily solved with a little bit of topical steroid cream or Protopic. Before Plaquneil, the topicals weren't going hardly anything for my DM. SO the fact that now they actually WORK is great. And I'm applying them maybe once every 3-4 days, maybe? 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 hey 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 plaquneil. 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). (..) My energy level has also returned to normal! I'm back to 6 hours of sleep = good. FOr a long time, I was one of those people that a really only needed about 6 hours of sleep a night to be 'good'. Then over the last 3 yrs or so it's been more like I need 9 hours AT LEAST to feel just 'functional'. To the degree that I'd way scaled back my social activities because I just didn't have enough go juice for anything else. Fingers crossed that it will continue to go well. I will try to post updates as things progress. Conclusion, mixed reports initially on plaquenil use: some acne and later some hives but also some improvement in finger swelling and increased energy levels. Also a decrease of facial flushing. However, more blotched redness according to patient. Have not found more updates yet but emailed Mutantfrog for more information. 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). smoof, keep in mind that i am also taking 400mg daily of plaquenil, which im sure uve read about here. also, i apply brimonidine opthalmic eye solution topically (works as a fast acting anti-flushing). so between the three ive make noticeable improvements. I dont think remeron is a silver bullet but im hoping the cocktail will work from different angles. and im hoping maybe itll enable me to lower my plaquenil dose. and i do feel like remeron covers some angle of my flushing. chlonidine seems like its helped people.” No more updates from this poster, but it seems the plaquenil did help with the flushing. Then poster started using remeron and found more success, unclear exactely how much the plaquenil was helping.



Pippo used 400 mg daily and updated on his progress: “now I am second week of plaquenil (400 mg daily).....my flushing is almost going but I don't know if it is Plaquenil effect,my redness is the same than first day ...No side effects... I continue to update my progress every week...gook luck!!” And: “I have started with plaquenil on 2 Februay and from this day I have had 1 or 2 flushes maximum (first I flushed every day)...I don't know if it is Plaquenil effect becouse the flush is going after a day and it is very soon.....I am so confused...but I'll continue to use Plaquenil!!” But soon after Pippo wrote: “Yesterday I've stopped my plaquenil treatment for problems to my eyes....!” So, verdict here is yes it worked for the flushing but no I didn’t continue due to side effects. Pippo found the plaquenil working for his rosacea/flushing but stopped due to side effects. :)


Perry also used plaquenil and stated after 3 weeks, taking 200 mg twice a day, that he saw no effect yet. He followed the guide lines of  155-310 mg per day for prolonged maintenance therapy and planned on taking 400 mg per day for the first month and then 200 mg per day for at least one year. No more updates were found on Perry and his plaquenil use so far.


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.
She writes about it: “Well 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”
-Later explaining: “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 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.” “The bruises appeared where ever there was slight pressure-so for example I would get lots of tiny bruises across my chest where my seatbelt laid, etc. Someone suggested it might be this:
http://en.wikipedia.org/wiki/Petechial I wouldn’t like to say that this was 100% connected to the mepacrine but there appeared to be a link. Don’t forget I also turned quite yellow so perhaps my body reacted differently to how others do. I would still recommend that people consider this medication.”
-And: “It worked very quickly. My flushing reduced within a few days and stayed that way the whole time I was on it. I dont take it anymore and whilst my flushing came back when I stopped it is not at the level that it was. I dont really get any papules (not since my lasers) and so cant comment on this.”
She stopped because of: “The side effects-i posted them back a while ago. In effect I turned quite yellow, lost some hair and ended up with lots of little bruises. Not saying it was definitly caused by the mepacrine (well the yellow most certainly was) but i had done nothing else new and the hair loss was fairly dramatic” If it wasn’t for the side effects, she would definitely have been using it still she says. Phlika later started plaquenil and I think I can remember that she had good results with that. I haven’t read back on her posts about plaquenil yet but will try to do asap. End conclusion: mepacrine reduced flushing but gave too many side effects. Plaquenil seemed to be working well. 



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, lamarrs, 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 he posted “OH MAN. I finally took my first danged pill. AND MY FACE IS PERFECT NOW”. Snuffleupagus mentioned that 4months of mepacrine didn’t help him/her in the past.
-On
day 5 Rand627 updates: “Bit of encouraging news though, 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. There was about a 20 degree drop from this Sunday to the last. So, who knows. Still no digestion or head problems. No real change as far as base redness, but I have a feeling that that won't change until after I've stopped flushing for a few months because if I understand the disease correctly, every time you flush the redness gets worse..or at least maintains its redness. Anyway, I'll be back in 5 days for the 10 day update. That's the earliest I've ever seen someone reporting success with this drug, so we shall see.”

-On day 15 he writes 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.-And
: Some people success within a week, others a month. Full benefits, I don't really know. 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 updates: 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..hm. 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 flush. 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 florescent. 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 florescent bulbs and it gets humid and hot thanks to the other people. That particular situation strains 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. -yeah, the mepacrine has helped. Without a doubt. I just hope it continues to help.
-latest 2 updates: 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!” And:“As far as updates go..hm. 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. Ive recently cut out milk completely from my diet. It's been about 2 weeks and during those two weeks I've accidently had a tiny bit of milk. I've cut down at least 99% though. This new diet has significantly helped reduce the miniature pimples I used to get around the mouth. They are almost completely gone in fact. It's been almost a week since I got one which is a huge relief. The question now is whether or not those pimples are related to my rosacea. If they are then I'm optimistic about it affecting flushing down the road. It hasn't helped much in the redness or flushing department. So who knows. About the PDF..that's one of the things that has helped me most in the past. Keep as warm as you can without flushing. It's a simple concept that everyone on these boards should know. It can and does definitely help!” End conclusion: plaquenil seems to be helping with flushing and redness but no end conclusion yet, I am waiting for an email reply for closure on this ‘case’ :) Note that the initial improvement seemed a lot more than the later improvement but this can also be due to high expectations in the end?  


RatherBeSkating used plaquenil and got eye problems. 
He wrote on that: “Hey again guys, I recently found out that the reason I was getting blurred vision and seeing halos when on Plaquenil was likely because of the build 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. Thanks

-He later asks how to make mepacrine himself, indicating that the plaquenil indeed helped and indeed gave too many eye problems to continue with. He has at this point however considerate relief from the melanotan and clonidine. He also writes: “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. So, does anyone know how to make your own mepacrine? I know a few people who used to make their own accutane, so I'm certain it's possible, just need the expertise.”

-One of his later posts reads: “Just want to say a big thank you to all on this forum. Not been here long but without you and your info I wouldn't have been able to get to the stage I'm at.
Basically, my skin is fine now”. So plaquenil helped him but gave too many side effects (eyes) and he found relief with melanotan and clonidine.  


RedFaced wrote about plaquenil and mepacrine: 
"It has a wide variety of known effects -aspirin-like anti-inflammatory, mild immunosuppressive and (mild) cholesterol lowering 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 its effects on skin. Mepacrine has very similar effects on the skin and it eliminates a different parasite then Plaquenil.” RedFaced used mepacrine and wrote: “Coming up on 1 week. 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.”Reported there was no change after one week and then updates that the flushing has increased and has become pretty bad. -Then: “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 Plaquelin and his thoughts on switching over because it is not stimulating like Mepacrine and essentially will do the same thing. I haver read up on the eyes and it seems that it is only at risk if you are on high doses for your body weight for 5+ years.”

-And “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.” 
-Then: “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 antimilarials 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.” And “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. Any suggestions? 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.” And: “Not going to 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”

-Then: “I've been on 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. Waiting for reply to conclude definitely.


Snuffleupagus tried mepacrine and saw no change in flushing after 2 weeks of use and skin looked blotchy instead of even and more pale while resting. 
Later in the trial he/she mentions more facial pain and burning after washing the face, and longer flushing despite cooling. 

-Following update: “Well my skin has been a mess the past few days. Weird cause when i started this i didn't notice any ill effects till now. Maybe it's starting to work? The whole gets worse before better. Unlike halfpipe i didn't get worse right away though...”         

-Then: “So yesterday my whole face burned even when fanning myself or on the cold basement. Today of has diminished but still faintly there. Weird enough my ears are burning right now! Ow!” 
And: “I am having some issues with sleeping however. I have read that Mepacrine is a cortisol stimulant, which means it had mild stimulant effects, sort of like a mild "upper". I am trying taking it in the morning but hasn't helped much. I have read that insomnia and excitability have been listed as possible side effects. I am hoping this issue with not being able to fall asleep and stay asleep passes over the next few weeks.” Then: “The last few days have been more painful than before including stinging all day today. I didn't have the worsening till 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!”                                                   

-Then: “So it's now been 4.5 weeks. Still suffering. From day 1 i didnt 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 i 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 im 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.”                                                                   

-Then there is a positive change: “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.” But 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? When i took the skin sometimes it's cold, but usually it seems a little warm, which is weird cause it feels like a cold burn! 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 response to iVAN mentioning increased flushing while he was on mepacrine Snuffleupagus responds: “I also 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!!”

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 with no reason to be (sitting in a cool basement!).
 End conclusion: probably discontinuation mepacrine after increased symptoms, waiting for confirming email reply. Mepacrine didn't seem to really help in the end, patients seemed to have noted some increased flushing burning and redness overall.


 


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
“hi, .. 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 occurr after youve been on it for a long time. If you dont exceed 6mg/kg of body weight you should be fine. Also its reccomened 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.”
-And later: I do take it for my rosacea,... my rhuemetologist 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 havent really noticed much results so far, I know its 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 thats 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.”

-Then finally: “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 couldnt see anything, but she agreed to send me to an opthamologist. (I dont go until Aug 29) I also called my rumetologist and she didnt 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 defiantly not something I want to be messing around with. so for now Im not taking it.” So, verdict here is yes plaquenil worked for the flushing but no I 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 primarilly an antimalarial R.Arthritis & Lupus medication (helps decrease inflammation etc) except that at long-term 100mg day Mepacrine is known to cause yellowing in the skin espec in fair skin people, and if 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 yrs 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 symtpoms and the flushing level quite a bit so far, but as i'm only on low dose 200mg. I still have some way to go before the medication really starts to kicks in (from month 4-6), i.e. 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 updates 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 wel on the plaquenil and from what I understand she still uses it and also had successful v-beam laser treatments. Verdict: positive. Plaquenil helped her with redness and flushing. Side note, Shantelle has other underlying auto immune conditions. 


Threesixty also tried plaquenil: 
“I have been on plaquenil now 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 eye lids and redness cleared a lot in the eyes. What 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 don't get so hot. I am also on lyrica (7weeks now) and applying neocutis cream (6 weeks now).”
-Later she updated in response to a side effect question: “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 eating these but to reduce the dosage to 400mg a day.” And: “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 it might have something to do with it. Anyway I will continue at least a year with this med. I will update within a month.”  Plaquenil seemed to improve redness and flushing of the cheeks somewhat after 4-5 weeks, waiting for a reply to make a conclusion.


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 effect my sleep. My flushing flared up very badly after I tried taking 20mg tabs of Accutane--not many either. 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 woke up, flushing watching TV etc. I also experienced an increase in baseline redness.”
-Then: “Have been taking Mepacrine for a week. At first I got a slight headache which came on about an hr 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.”
-Then: “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. Does anyone know if the pigmentation reverses on stopping Mepacrine. It doesn't bother me that much but I am worried about more pigmentation occuring.”
-Valby then updates that she is 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.”
End 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. She updated later: “I am doing SO well on Plaquenil. Thanks for asking! My face has calmed down a lot and I don't have nearly the same issues that I did prior to the beginning of Nov which is 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 effected 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 http://www.rosaceagroup.org/The_Rosacea_Forum/images/smilies/icon_smile.gif. 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 effecting peripheral vision permanently. My Opthamologist has been doing these tests for Plaquenil users for 20 years and has never seen anyone's peripheral vision effected 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.“


-And later: “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.”

Windsor90’s last posts on the matter: “There is a difference! I guess I have been so used to having a red face in the morning that I didn't occur to me the medicine could be contributing. Now that I've switched how I take it, I absolutely notice a difference when I wake up. My face isn't as red! Always grateful for the never ending advice and shared experiences of these forum members!! Thank you Shantelle!!”

-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 http://www.rosaceagroup.org/The_Rosacea_Forum/images/smilies/icon_smile.gif. 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 effected 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.”
Totally off topic but she also mentioned a topical that helped: “I have to say, on a side note, that the best facial product that I found even compared to prescriptions is an over the counter product called Prosacea. it is found in the drug stores and is by far the best topical remedy in my opinion." So, end conclusion: the plaquenil helped with facial redness and flushing and is still used to this day with success. Note: there are underlying auto-immune 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, 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.”

-He later updates: “The dermatologist's letter came today, she thinks it might be Rosaceaous Lymphoedema as apparently 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 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)."

-Another update from Y-gwair: “Haven't found plaquenil does anything for rosacea, have been taking it a while and 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." Y-gwair seemed to be doing worse on the plaquenil, or at least it did nothing positive. Unsure if he actually started the mepacrine, waiting for a confirmation reply on this one.



I used plaquenil myself in 2009 
and after about a week I mentioned no increased redness and flushing, perhaps a little decrease, but eye problems, identified by an eye specialist as have inflammation of the eye cornea (keratitis) and eyelids (blasfitis or something). I stopped taking the plaquenil and my eyes returned to normal.
Same eye problems started this time, almost immediately (gritty, burning sore eyes). RedFaced responded to this aspect: “Hey, try no to worry. I have ocular rosacea and also suffer from blepharitis as well as conjuctivitis. 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.”
-I replied : “the keratitis seemed coincidental to me as well. But I after all continued with the plaquenil for 2,5 weeks and was getting progressively more acne on my face (normally never have this) and break outs all over my cheeks of welts: fluid filled eruptions that were itching badly. It started with 2, then 5 , then 8 and at some point I just wanted to stop with the plaquenil. So I hope they will soon disappear, together with the p&p´s. I for now stick with the good old diclofenac as an anti-inflammatory for outbreaks I think...” 



"Sent: Wed 21/06/2006 09:36
Subject: very bad reaction to the mepacrine, could you perhaps give me any advice?

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,

His reply:
I have never known mepacrine make rosacea worse - it sometimes has no effect but never worsening. The half life bof the drug is fairly short so any reactions should have dissipated by now. Could there be another reason for the flare?




Information about the potential retinal side effects:

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 cessation of therapy.
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:


End conclusion

Finding it hard to draw a final conclusion while I am still waiting for updates from some of the forum members. I do get the feeling however that more people had increased symptoms from the mepacrine than the plaquenil overall. This would fit my own (short) experience so I am careful with this assumption. 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 shoot outs. They did have underlying auto immune diseases however and perhaps the fact that they used accutane prior to developing rosacea is of some importance too?

The plaquenil seemed to give more eye problems. Also after short term use (less than 6 months). However, I did get the overall impression that more people found improvement of their flushing burning and redness from this specific antimalarial. Down sides are that it takes a lot longer than the mepacrine to start working and also that there is a much higher risk of side effects that are bad enough to stop, mostly the eye problems (halo's, blind spots, burning etc). 

I personally will ask my derm for other anti inflammatory or even mild immunosuppressive medications and I will give the plaquenil another try perhaps, although even after stopping with it for 4 days my eyes are still burning.  

 





UPDATE January 2013

I have written updates about my own trial with plaquenil in the late post, 'Ho Ho Christmas' and the earlier post 'Anti inflammatory medication for rosacea'. Current end conclusions on my own plaquenil trial period is this: for some patients mepacrine and plaquenil are a massive help, but as it seems now, not for me.. I have a very sensitive skin and very reactive rosacea so I am not quite the right example to look at in terms of side effects to be honest. A Uk friend of mine has has good results from mepacrine for many years for her severe facial flushing, but I get worse from it, and I blame that on the yellow dye in it, at least partly. I used plaquenil three times now and lately for 3 weeks, and the first 2 weeks I was paler and less flushed but after the 2 week threshold it turned around and I started to get very very flushed and broken out. I also get badly burning eyes from it, every time I use it. My Uk friend (the one from the mepacrine) had the exact same experience with it. But there are several rosaceans on the rosacea board that have very good results from the plaquenil. I think it is a powerful drug and a great option for tackling the inflammation and the flushing from subtype 1 rosacea. But sadly I get more flushed from it at some point. Still sitting out the flare up at this moment.




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?22613-Photoallergy
http://www.rosaceagroup.org/The_Rosacea_Forum/showthread.php?22631-Plaquenil
http://www.rosaceagroup.org/The_Rosacea_Forum/showthread.php?24802-Plaquenil-vs-Mepacrine
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
http://www.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


 


My own trials of mepacrine and plaquenil

2 December 2012

I am currently trying plaquenil again, an antimalarial medication. It has made me less red and flushed already after a few days, although that is not quite the expected time frame 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. Again, I don´t understand why it happens immediately for me, it was the same when I tried the medication 2 years ago. I will work on this post and give a lot more information on all the mentioned medication groups and look for rosacea patient experiences while on them so stay tuned :)  But I do believe that anti inflammatories are a major factor in the stride to improve our rosacea. 


I have 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 bad eyes, wear contacts, have ocular rosacea problems often so who knows, I might just the the unlucky one. So mepacrine will be tested soon (the plaquenil ran out of 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 auto immune problems, like lupus or arthritis patients.


Current state of the plaquenil experiment is as follows:

Day 1
DAY 3, not even flushed when I woke up





Day 4, 21 November 2012
I took 200 mg pill of plaquenil right before bedtime last night and I regretted it within half an hour. I noticed already that the med gives a lot of energy. That is quite a remarkable thing, cause I am usually very tired, and not too energetic about anything. But now I felt like the one time I used speed on a rave party back in the 90's; totally wired up and awake. I can't remember ever having had a night where I slept zero hours, but last night was such a night. Kept checking my phone for the time and my thoughts kept clear, no sleep! Take into account that I also took the 15 mg of mirtazapine and that usually knocks me out in half an hour. Nothing now. So I will skip my tonight dose and hope that I can sleep (felt sluggish and zoned out all day so I hope for the best) and then perhaps tomorrow morning I will take the next pill. I had one pale cheek and one red cheek this morning. I blame that mostly on the incorrect 'sleeping' pose I had chosen; pretty flat out with one cheek on the pillow and the other one straight up, ánd I didn't elevate my head enough to stop the blood flow going to my face. The cheek that is pointing towards the ceiling is always way more red than the one on the pillow. I noticed that for the last 5 years and I change bed sides all the time, to stop one cheek from deteriorating at a faster pace than the others. I guess it might come from the blood of the elevated cheek running towards the nose/inner cheek area? But the other cheek was very pale and unflushed all day and I think both cheeks would have been ok if I had a better position. I ate chocolate mud ice cream instead of dinner the night before and the most ghastly unbalanced food palette, of Nutella, more chocolate mud ice cream and chestnuts from a can. I wanted to give the plaquenil a real run for it's money and see how much pro-inflammatory foot items it could neutralize. So far so good, I wasn't fully flushed this morning, like usual after such a self destructive meal. I managed to bring the bad cheek back to normality during the day with a cold pack (only press it very shortly to the cheek, have a fan on and pointed towards it, then cool again with the cold pack- well wrapped up- until you feel the heat and burning subside. Careful of ice burn! Was slightly pinkish the rest of the day. So, my eyes are still sore and dry and burning and gritty. I have bought preservative free eye drops to lubricate the eyes and I use sterile saline solution too and I can manage it but I am still worried about this side effect. Will give the med a little bit more time for this to revert but I fear the worst as the eyes are not improving at all. Why is there always something ruining the party when it comes to medication? Fingers crossed, will try to get some well needed sleep now, after an uplifting episode of Boardwalk empire in bed on the laptop :) Sleep well.



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 (see the pics, 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 fear being struck down with severe flushing from the mepacrine for the next 2 weeks (has
a hugely long half life of at least 14 days and in 2006 I had ongoing flushing for at least 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 try to upload some pictures of my graduation party back in 2006, when I was almost fluorescent from the flushing and redness. 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
There we go













 






Flare in 2006 from the mepacrine, this was during my graduation party with my parents next to me





Day 6, 23 November 2012

Yesterday went fairly ok. I took the plaquenil pill around 10 am 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 head ache 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 wont have a delayed 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 redness and inflammation wise.


Day 6
Getting more red and hot in my face after my next mepacrine dose



 Day 7, 24 November 2012
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 on 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 as well. Slept bad again, can't believe it almost given the usual knock-out blow that the mirtazapine gives. 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 by then, 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 in 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 doxycicline however, and that does absolutely nothing for the vascular rosacea, apart from giving me more bowel problems and a much redder face. So I sure hope he can wiz something better out of his black hat this time :) Fingers crossed for the mepacrine still however, and also still fingers crossed for the plaquenil. I know that they are not supposed to work within the first weeks (months 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 facial skin, so as long as I am not deteriorating too much, I can sit the long waiting time out.






Day 8, 25 November 2012
Fourth 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, see small pic. 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 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 plaq. 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. 

Had a nice Sunday, a friend came over with her young son and a friend from Manchester was here, all for lunch and some old fashioned Dutch games (sjoelen, flat 2 meter long wooden slide and dices that have to be slide into particles for points). It was nice, we chatted about why only 1% of the US population has the 98% or something wealth and how there is a stir right now in Holland about an author who wrote down what life in one of the 'reserves' of the rich and successful, Bloemendaal, is like. That's where the money grabbing bank managers and insurance boys life, who get away with greedy investments, monstrous bonuses and who are always backed up by government money, yet they said on camera for the national news that their village was 'only meant for the winners. Losers were not tolerated in their surroundings and they have no sympathy with that low life whatsoever'. They are rich and they feel entitled to become even more rich. Made us pretty annoyed when we discussed it. The UK friend said that he could always tell what type of people his former employers were, when he did gardening up home. The working class people brought him a cup of tea and a sandwich, and before he finished the job they would come out with his money, yet the well to do gave him nothing and very often started muttering about having no money in the house at that moment and if they could pay him later, when he had to ask for it. Old aristocracy in the UK wants to keep their 'old money' within the family and spend as little as possible. We discussed how people who never used to be rich and who won the lottery are at risk however to spend it all or wash it all down the drain, especially homeless I once read. They followed a few homeless lottery winners who became millionaires and within a few years they had lost it all and were homeless again. Well, neither of us has much money so it was an interesting topic :) Going to watch the documentary 'Park Avenue: Money, Power & the American Dream' tonight, just to stay on topic :D 
http://www.pbs.org/independentlens/park-avenue/


The friend brought her dog. It's a massive black Labrador called Angie and I think I might have gotten flushed from the dog being inside a lot. Bassie the cat was allowed inside as well therefore, he usually is in another 'cat room' or outside, but I take an extra dose of Xyzal sometimes and let him sit on my lap or cuddle up. So Bassie was inside as well and after his initial thrill of being allowed in, he got in a state of great fear, hissing at Angie with the hairs on his back and tail right up. I'll add some pics. We walked with the dog and had fun with the boy, who wanted to show all his tricks. He threw stones at a fair distance and of course I had to throw as well and didn't throw my stones as far as his, much to his amusement. The next 15 minutes I had to keep throwing stones and hear all his instructions to improve matters. Was fun. Now that everyone is gone I like the peace and quiet but I also miss the kid slightly.








Bassie not happy
Bassie in his usual good looks






.




Day 9, 26 November 2012

Fifth 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. Although I do feel hot and burny, but no full on flushes for the last 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 !! 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 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 2012
I had a few days of 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 do am still more red than usual today. I guess it takes another 14 days at least before half of the 700 mg I took so far is out of my system. So uhm.. that will mean it takes 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 lubrified 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 from the 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 the 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.

Saw a beautiful movie last night by the way, Man on Wire. And a small clip about a climber who does something equally scary and amazing: 
http://www.youtube.com/watch?v=SR1jwwagtaQ&feature=player_embedded

 





Day 13, 30 November 2012 
Burned all night and am pretty red and flushed today. Not feeling good. Eyes are sore, 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 severeal 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 pitty partying, I'm going out now.



Day 14, 1 December 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 more red and flushed. Oh and very hot and burning face. Not much else to note here. Pics today compared to about 10 days ago... pffff, looking as bad as I feel clearly. 



Day 16, 3 December 2012
No change in the situation; red, red more 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 coldpacks. 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, 5 December 2012 
Starting to really regret my choice 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 untill 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 intermitted period of the same flaring. 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 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 antibiotics and they didn't help and made matters worse. Period. (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 blespharitis. My derm said that serious eye problems from plaquenil only happen after long term use of 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 might 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 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."
And the Daily Mail mentions diuretics as potent helpers. 
  











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 quite a few people I know, who are having a lot less rosacea symptoms because they take mepacrine. One size doesn't fit all unfortunately.

I stayed off the anti malarial pills for about 2 weeks 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 as painful now and I seem a bit less red in the face. Will continue with this for as long as I can and hopefully at least for 3 months, so the plaquenil is at an effective cumulative dose by then. Fingers crossed!
Good luck to everybody dealing with Christmas. 


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 in what is causing what now. I will have my eyes checked next week or so and 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.  

Having a red day now though, I can clearly still look very spotty and red and flushed while on this plaquenil. Eyes are very very sore today.


See further updates on my plaquenil trial at this blog post (scroll down in it for further plaquenil updates).

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