22 August, 2012

Do I have rosacea? What to look for.

Do I have rosacea? What to look for

Rosacea does come in different shapes and sizes and with different symptoms sometimes, but there are some basic characteristics that might help you to figure out if it could be rosacea you are having. The problem is that they are symptoms that a majority of people with rosacea have, but as I said, not everyone :) But as a rule of thumb, there is a subtype 1 where the skin of the face - especially the cheeks - can go red, get flushed, feel warm/hot, and subtype 2 where the skin can also go red but more with a constant background redness, and acne-like outbreaks on top. Flushing is one of those things you most likely recognize fairly quickly when you have it, but to help describe it, patients have described it as the feeling of having bad sunburn; like the skin on your face is many degrees too hot, glowing, burning, with heat crawling up. Radiating heat. Swelling, stinging. Some people would say that it feels like an iron being pressed to your face, and the heat coming from the inside out. The skin can also feel tingling and itching, or numbing. The skin also tends to become very sensitive, to a point where even touching your face can be uncomfortable. Others feel like they are running a fever and are badly overheating. For many people with rosacea, being in the sun can be a trigger and make the redness and potential burning worse. 

A lot of people also notice that drinking (sufficient) alcohol can make their face more red. Spices and emotional stress can do the same. I think that what makes rosacea typical, is that it can make someones skin go red in a matter of seconds or minutes, when triggered. This mostly goes for subtype 1, and is almost like a heavy blushing attack. But the difference between rosacea and blushing is that over time the 'blush' from rosacea takes quite a long time to subside. And these flushes become more frequent. And with time, many people also find that the redness of the skin starts to hurt, or feel hot. Sometimes the face even becomes a bit puffy. As I said, these are no strict criteria and rules, but maybe they can help you in the right direction. A dermatologist should be able to properly diagnose you ideally, because there are more skin conditions that can look like rosacea, including dermatitis, seborrheic dermatitis, acne or the skin redness might be linked to an allergy, or a systematic illness like lupus even. It's up to a dermatologist to make the right diagnosis.



Some more general info on rosacea 

Persistent flushing from any cause can eventually lead to rosacea (but not necessarily). Rosacea can manifest itself with pimples and red skin in the center of the face. Some people get visible blood vessels (telangiectasia), swelling of the skin (edema), and eventually rosacea skin can even thicken, if nothing is done to treat it. I have written a lot about a specific subtype of rosacea on this blog, the type that comes with skin redness, burning and flushing, and not with pimples and skin outbreaks. But I will just give some common symptoms and characteristics of rosacea here, together with pictures of rosacea skin. It might serve to see differences with other medical conditions mentioned and envisioned here.

Rosacea is usually characterized by redness of the facial skin. Rosacea usually causes persistent redness in the central portion of your face, possibly including the cheeks, chin, nose and even ears and forehead. Some people find that the redness can spread to the neck and chest as well, but this is more rare. Apart from facial redness, small blood vessels might also become visible over time on your skin, as well as swollen red bumps that look a bit like acne, but often without the big pus heads. Many people who have rosacea also develop these types of bumps on their face, which can resemble acne, the so called subtype 2. But not everybody does, and people who primarily have a red and flushed face, might never develop these papulas/skin outbreaks. They are said to have subtype 1 rosacea. 

Subtype 1 patients are dealing more with general redness, skin burning and facial flushing (although those in subtype 2 can also encounter all these symptoms). Your skin may feel hot and tender. About half of the people who have rosacea also experience eye dryness, irritation and swollen, reddened eyelids, also called occular rosacea. In some people, rosacea's eye symptoms precede the skin symptoms. In rare cases, rosacea can thicken the skin on the nose, causing the nose to appear bulbous (rhinophyma) and red. This occurs more often in men than in women. It is typically hard to treat, but your dermatologist might be willing t try several medications, including creams (metrogel or Soolantra for instance), or a low dose antibiotic like Oracea (low dose doxycycline). Low dose roaccutane is also helpful sometimes, but you have to be very very careful with the dose; too high a dose and you might develop facial flushing from it. The dose needs to be very low, ideally as low as possible with any effect (think 5 mg every other day for instance). Rosacea is often characterized by flare-ups and remissions, especially in the early stages. Initially the redness on the cheeks, nose, chin or forehead may come and go. Over time, the redness tends to become ruddier and more persistent, and visible blood vessels may appear. Left untreated, bumps and pimples can often develop. Although rosacea can affect all segments of the population, individuals with fair skin who tend to flush or blush easily are believed to be at greatest risk. The disease is more frequently diagnosed in women, but more severe symptoms tend to be seen in men -- perhaps because they often delay seeking medical help until the disorder reaches advanced stages (source and source).



I wrote a lot more about the phenomenon of facial flushing, and what can cause it in this blog post. 


This is an older picture, I think doctors now started to differentiate another subtype, neurogenic rosacea, which means burning face rosacea, with bad nerve pain, either from redness and flushing, or unrelated to that. But rosacea is a bit of an umbrella term for redness of the face, however the subtypes are very different in fact. Many people have subtype 2 with skin outbreaks, but not so much facial flushing. Subtype 1 has that flushing and intense redness of the face, on and off. Then there is a form that makes the nose red and one that makes the eyes affected and red and inflamed. Doctors used to think that rosacea starts as subtype 1 and then works its way to the other subtypes, but they came back from that. many people with subtype 1 and flushing never really go on to subtype 2 with pimples and pustulas, although it is possible to get both at some point. But subtype 2 is very different from subtype 1, which has much more to do with dilating blood vessels, central nervous system malfunction and a problem with the inner thermostat, and then there are countless and countless of other things that can cause a red face, from a ton of other (skin) diseases to gut issues to allergies to inflammation. It's one big mess basically to figure out what causes anyone's rosacea and then to treat it.

Luckily, a lot of people with rosacea can eventually find a treatment that works for their skin, calming things thoroughly down or even going into remission. Granted, the flushing subtype 1 tends to be a bit more difficult to treat, but there are options, including anti flushing medication, anti inflammatory medication, diet changes, natural supplements or laser/IPL treatments. I know so many people who used to have subtype 1 rosacea so very bad and who got it almost completely under control eventually. I happen to be unfortunate in that IPL didn't work for me and even made me a lot worse during my first ever treatment. And I'm unfortunate in that my flushing is quite severe and hasn't gone into remission (yet). But I keep on track with the things that do help me and my rosacea is a lot more bearable now than before I saw Professor Chu and started anti flushing medication. And for everyone still out in the woods, I would advice to take things one step at a time, and to make a list of all the treatment options and all the medication and supplements you think you will want to try. And to start testing and find out for yourself what works and what doesn't.





All rosacea cases might look alike, but I think they are often very different. Just the difference between subtype 1 and 2 is already profound. Rosacea seems an umbrella term for skin conditions that all deal with redness and inflammation, but which are otherwise quite diverse. Flushing and burning requires different treatment usually than permanent 'solid' skin redness and bumps and outbreaks. Antibiotic creams and pills often work for subtype 2, and if not there are also Soolantra cream, low dose doxycycline (oracea), topicals like tea tree oil and low dose roaccutane even to help out, but none of these are typically a solution for subtype 1 rosacea, with red hot skin and flushing that comes and goes. Subtype 1 is often much more about blood vessel disorder, or underlying firing up conditions like allergies or auto immune diseases or hormonal or central nervous system things, that make the blood vessels widen even more. Often people with subtype 1 also have thin and sensitive skin that doesn't protect anymore. There is a lot less known about this one, and demodex mites and bacteria are less often playing a role in subtype 1 than in subtype 2.

And when people have underlying auto immune diseases, then these can be like a fire under the rosacea. Quite a few people with rosacea seem to also have a digestive disorder of some sorts, or auto immune diseases, may it be thyroid disease, IBD, asthma, arthritis, erythromelalgia, lupus, allergies or another one. There have been people with full blown rosacea skin, who turned out to have a mast cell disorder and a histamine intolerance, or a food allergy all along. Then fixing that problem or cutting out allergens can be enough for the skin to recover. So it is complex.. There are many other health conditions that have  face flushing as a symptom. Think for instance of lupus, mastocytosis and erythromelalgia. That's why you need a good doctor or dermatologist to help put the puzzle pieces together and do additional testing. Typically dermatologists want to rule out lupus and carcinoma cancers, which can give a rosacea like skin appearance. But then there are other skin conditions that might look like rosacea, including regular acne, eczema, dermatitis and seborrheic dermatitis.




Anyway, when you struggle with a red and flushed face, I would personally approach this problem very strategic, which helps you eliminating possible causes and treatment options, and also might help you to feel at least a little bit of control, in a situation where your skin will feel definitely out of control. Control taken away by rosacea and its many flare triggers. When your skin normally was a protective shield and something that was just there, just functioning as normal, it can be devastating when it suddenly stops protecting. Stops functioning as usual. On top, rosacea flares might not always look look you are on fire to the outside world (and sometimes they do), but even pink cheeks can feel to you as if they are on fire. And that is a frightening sensation.



Some people asked me if I think that subtype 1 rosacea automatically turns into subtype 2, if you let it roam free long enough. It seems that doctors tend to think this is the case. If you let face flushing do its thing for long enough, the skin can become inflamed and red more permanently. But I don't think that everyone with a flushing problem will automatically end up with skin outbreaks eventually. It didn't happen to me at least. It does seem to happen to some others, if I am to believe the literature on rosacea. But for me, I have had type 1 for 18 years now and I have never developed into stage 2. Sometimes a long period of facial flushing makes my skin break out a bit in small red bumps, but they are the result for me of face swelling and inflammation, not of a bacterial issue with the skin. They go away soon enough again for me, and when I can control my flushing for longer periods at a time, I don't seem to get the break outs either. However, I can trigger them by using skin care products that my skin reacts to.. The jury is still out on demodex infections, which are considere dmor ecommon for subtype 2 rosacea skin than for subtype 1, but even there scientists found evidence that people with red flushed rosacea skin, can still have a demodex overgrowth. Read more about this here.



With subtype 1 rosacea, with coming and going redness and flushing and burning, you need to focus I think on getting the flushing under control I think. The longer you can stop the flushing and the longer you can bring the redness back to a more normal skin colour, the more chance the skin and blood vessels have to calm down. I flushed for a year straight in 2005, no exaggeration, and I was convinced that it was the death stabbing for my skin. that I would never be pale again, that my blood vessels would have spread and spread into this vast red network, never to be normalized again. But only a week into my new anti flushing regime, and my skin could look pale and normal again for periods on end.. I don't have big visible veins I must stress, no telangiectasia.

When you go to your doctor or dermatologist and you want to try a certain medication for your rosacea, then I would advice you to print out medical papers, ideally from Pubmed or so, that states that research found this or that medication to be beneficial for rosacea or for the treatment of hot flashes. On my blogpost on my medication I have already provided links with every medication I take. Doctors might feel unwilling to prescribe these medications for good reasons, but sometimes they also just don't know that there are ways to treat the flushing and burning. This is one of the most debilitating aspects of rosacea, yet there is very little information out there or research done on how to treat this aspect of rosacea. The medications that my London professor uses to treat his rosacea patients are not specifically designed for rosacea. Yet they have a long standing record to treat other conditions, of which we can benefit. Luckily there is research done for each and every one of them for the treatment of hot flashes and sometimes even for the treatment of rosacea. Use that information to show it to your doctor. they don't always know every little corner of the specializations of less well understood conditions like rosacea. It might also help to print out some patient reviews, especially The Rosacea Forum is a massive database of decades of rosacea patient information and experience. And in case you flare, but not on the day of your appointment, you might want to consider printing out a full flare picture of yourself. So that the doctor sees what your skin can look like on any given moment. It is also important that if you feel pain and burning, that you emphasize this to your doctor. Rosacea is all too often seen as a primarily cosmetic condition. And though it sometimes is just that, often it also gives a lot of neuropathic pain and skin tightness and downright acid like burning. The amount of skin redness can be indicative for the level of nerve pain, but doesn't have to be. I used to just get pink in my early days, yet I would feel like my skin was on fire all the same. It was very difficult back then to explain this to my family and friends. And even to my GP.





What can doctors prescribe to treat rosacea?   

I haven't found a very good list of creams online yet, although there are many posts on good rosacea skin care products. Medication wise, I think the following products are important to know about. Please check my more in debt post on rosacea (flushing/redness) medication here:

Oral antibiotics mainly tetracyclines, Oracea and macrolides: used for rosacea subtype 2, with skin outbreaks and pimples and redness. Mainly effective for subtype 2 rosacea.  But for some, meds like doxycycline (or low dose doxy: Oracea) and lymecycline can also lower the skin redness, inflammation and sometimes even facial flushing. This is a first line treatment option, and often the very first things a dermatologist gives to a rosacea patient. Metronidazole cream has the potential to irritate very sensitive rosacea skin, but otherwise can be great at reducing skin outbreaks and pimples, and even background redness of the skin. For skin flushing it has a less good track record, although there have been mentionings of it even helping for that (but rarely so). Antibiotics were once prescribed because doctors thought that rosacea was an infectious disease back in the days. That turned out not the case (as in: it's not an acute bacterial infection), but certain types of antibiotics, especially the tetracyclines, do help by lowering inflammation in the skin. So although some people with subtype 1 rosacea with general redness and burning also see improvement on them. Rarely effective for facial flushing and burning, and not always with the erythema redness either. All tetracycline antibiotics I tried over the years made me personally a lot more red. I won't discuss them here. They can help some people with rosacea, because these drugs have anti inflammatory properties, lowering the inflammation of skin and blood vessels in rosacea patients. Unfortunately, for some they come with side effects, especially if you take them long term. It is best for the long term to try low dose doxycycline (Oracea or regular doxycycline at 40 to 50 mg a day), as at this dose the doxy still has anti-inflammatory effects on the skin, but without interfering with normal bacteria in the digestive system.

Antibiotic creams metronidazole cream, rosex cream: used for rosacea subtype 2, with skin outbreaks and pimples and redness. METROGEL (metronidazole gel), 1% is an aqueous gel; each gram contains 10 mg of metronidazole in a base of betadex, edetate disodium, hydroxyethyl cellulose, methylparaben, niacinamide, phenoxyethanol, propylene glycol, propylparaben and purified water.

Finacea gel/cream used for rosacea subtype 2, with skin outbreaks and pimples and redness. Read more on Finacea here. Each gram of Finacea contains 0.15g (15%) micronized azelaic acid in a gel base. It also contains 0.1% benzoic acid, propylene glycol, polysorbate 80, lecithin, polyacrylic acid, triglycerides (medium chain), sodium hydroxide, disodium edetate and purified water

Soolantra/Ivermectin cream used for rosacea subtype 2, with skin outbreaks and pimples and redness. Read more about this treatment option here.

Mirvaso / Rhofade cream used for rosacea subtype 1 with flushing, redness and burning of the skin. Both have some bad reviews however and can cause rebound flaring of the skin. They constrict the blood vessels in the face temporary, but after that rebound worsening can happen.

Other creams, for instance sulphur cream or ZZ cream used for subtype 2 rosacea with skin outbreaks and pimples.

Corticosteroid creams: NOT to be used for rosacea but some dermatologists prescribe them regardless, as they will help initially to make the skin less red and inflamed. However they can permanently worsen your rosacea and will do so temporarily for (almost) sure; a big gamble. Make sure to check all ingredients, as inactive (filler) ingredients can irritate our skin just as much as any active ingredient a cream might have. In bold I highlight common skin irritants in these creams. Read more about this here. 

Anti-flushing medication - Clonidine/moxonidine/beta blockers/certain antidepressants/ antihistamines. Read more on medication for rosacea flushing and redness here.

Clonidine - used to treat uncontrollable facial blushing by changing the body’s response to naturally occurring chemicals, such as noradrenaline, that control the dilation and constriction of blood vessels. Therefore it reduces the widening of blood vessels that results in blushing.

"Clonidine has also been reported to improve flushing and blushing reactions at doses of 0.05mg b.i.d. At this dose there was no reduction in blood pressure, but lower baseline malar temperature may have been reduced by peripheral vasoconstriction. Although some patients do remarkably well on clonidine, responders are not clinically identifiable before treatment. Since control of this feature of rosacea is so difficult, a trial course may be indicated" (Source)

Beta blockers - including propranolol and carvedilol, can manage the symptoms of anxiety such as blushing and heart palpitations. They constrict the small blood vessels in the face and lower adrenaline-related flushing. Propranolol is used most often but sometimes carvedilol or atenolol also helps.

"Craige and Cohen recently revisited the use of propranolol in the control of flushing and blushing. At starting doses of 10mg t.i.d., none of their nine patients improved. Six of nine patients improved when doses were escalated to 20-30 mg t.i.d. At such high doses, three patients withdrew from the study due to side-effects. This study shows that the perceived ineffectiveness of beta blockers may be due to inadequate dosing."  (Source 

Antihistamines can help control flushing that is stimulated by (food) allergies and that are high in histamine.

Certain antidepressants - I take mirtazapine (Remeron) - but there are more who have a good record for helping with facial flushing, ZoloftEfexor and Celexa (citalopram) as well for instance. SSRI antidepressants in general can help, probably in a similar way in which they can help to combat menopausal hot flashes. People with rosacea also mention citalopram to help with facial flushing, redness and burning. Celexa (Citalopram) can help cut down on the facial flushing also anxiety, which can flare up rosacea in itself. Here is more on citalopram for rosacea. There are also antidepressants that can cut down nerve pain, like amitriptyline. Ultimately, I heard from my derms that mirtazapine is one of the best antidepressants for cutting down facial flushing. However, all antidepressants can come with side effects. Therefore I'd only take them for rosacea if your quality of life is really affected by flushing and burning and anxiety. I will discuss this below.

Also for the rosacea related nerve pain: certain antidepressants like Cymbalta (duloxetine) and Paroxetine (10 mg daily) might help
In 2008 Duloxetine became the second drug approved by the FDA to treat fibromyalgia. Used to treat treat depression and generalized anxiety disorder, Duloxetine is also used to treat diabetic neuropathy. Duloxetine is class of medications called selective serotonin and norepinephrine reuptake inhibitors (SNRIs).

Non Steroidal Anti Inflammatory Drugs including ibuprofen and diclofenac can help control inflammation and thereby limit facial redness and flushing. Mainly for rosacea sybtype 1 with flushing and redness of the skin. Mainly for rosacea sybtype 1 with flushing and redness of the skin: plaquenil/mepacrine and NSAID. Read more on them here.
                         
Antimalarials (plaquenil and mepacrine mostly) can help control inflammation and thereby limit facial redness and flushing. I wrote separate blog entries on them here.
                                                                                                                                         
Very low dose roaccutane. This drug has a higher side effect profile and usually works better for subtype 2, with p&ps. For subtype 1, with facial redness, flushing and burning, it has anecdotal success stories, but it's really trial and error with this one. Even on a dose as low as 2,5 to 5 mg a day or every other day (or even a lower dose; some people take 2,5/5 mg a WEEK and see improvement in their rosacea without the high side effect risk that roaccutane normally has), it can help. At very low dose, accutane can also help with skin redness and even with flushing for some patints. Accutane dries out the skin a bit however and at higher doses has the ability to cause accutane-induced flushing and redness. I'm planning a blog post about accutane for rosacea in the future. My dermatologists advised me against using it for my rosacea.

Diazepam/clonazepam - and similar calming anti anxiety medication has helped people with facial flushing as well. I have used it in the past but diazepam made me so dizzy and tired that it wasn't really for me. A friend of mine takes one tablet before having an alcoholic drink, very occasionally, and it helps blunt the flushing he normally gets from alcohol. Both medications and all 'pams' are typically addictive. Best not to use structurally and long term due to dependency and addictiveness.

HRT - for women with rosacea, who are going through menopause or who have instable hormone issues, using Hormone Replacement Therapy can help as well with facial flushing, redness and burning. You can read much more about this on the Rosacea Forum, for instance herehere and here.

Lyrica / Pregabalin, Neurontin / Gabapentin, Sumatriptan, amitriptyline - for the nerve pain and burning sensations that often come with rosacea, there are specific medications that can dampen it and that form specific neuropathic pain control. Most opioids can help with severe skin burning and pain as well. There are also antidepressants that can cut down nerve pain, especially amitriptyline.
The migraine and headache pain killer sumatriptan has also been used with some success (100mg up to 3 times a day). All these medications tend to come with side effects however, so make sure to always have them prescribed and discussed with the doctor.
I used Neurontin myself for a little while and wrote about it here. You can also read more on Neurontin for rosacea hereherehere and here. Gabapentin is developed to treat nerve related pain. Lyrica (pregabalin) is also used to treat nerve related pain, and is approved for use in diabetic neuropathic pain, and for the use in fibromyalgia. You can also read more on Lyrica for rosacea herehereherehereherehere and here
INFO about gabapentine and reduction of hot flushes:
https://www.medscape.com/viewarticle/772249
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1627210/
https://www.drugs.com/comments/gabapentin/for-hot-flashes.html


-Also for nerve pain; antiarrhythmics, such as lidocaine and oral mexiletine, Aspirin, pentoxifylline, nifedipine and amlodipine
Mexiletine is a non-selective voltage-gated sodium channel blocker, which belongs to the Class IB anti-arrhythmic group of medicines. It is used to treat arrhythmias within the heart or seriously irregular heartbeats. This is a rarely given off-label treatment.
Lidocaine infusions help stabilize pain.
You can read more about the use of lidocaine for rosacea herehere and here
You can read more about mexelitine for rosacea here
This young man has erythromelalgia and had success with lidocaine IV infusions:

Aspirin 0.1, twice a day.
Pentoxifylline dilates blood vessels for better oxygen delivery to the muscles, eases muscle pain.
Nifedipine is a calcium channel blocker (usually contraindicated for rosacea): it works by relaxing the muscles of your heart and blood vessels, dilating them. Used for angina, high blood pressure, Raynaud's phenomenon.
Amlodipine is also a calcium channel blocker.
You can read more about aspirin for rosacea herehereherehere and here

Niacinamide read more on this here.

Natural anti inflammatory herbs and spices Read more on this here.

Medication to lower histamine or mast cells in the body can help for those who flush and burn: antihistamines, mastocytosis medication including inorial and zaditine, anti asthma meds including montelukast. Read more on this here and here.

IPL or laser - read more on this here and here.

Low level red light therapy

Immune suppressive medication Potential help can come from , But this is very serious medication with worse than average side effect profiles): Remicade, Methotrexate, Mycophenolate.

Mirvaso helps some people but has a very bad track record. Far too many people reported severe rebound after using this cream. Sometimes their rosacea simply worsened from it. Very tricky cream, please inform yourself about the reactions that are mentioned on the web. I made an inventory of the good and bad reviews online in the first year or so after it came on the market, but it is just the tip of the iceberg, as I stopped adding new reviews to the (long) page at some point, but I have since been reading only more reviews. It might help you, but I'd just inform myself first about the risks and also be careful to test patch the cream first for a little bit of time.
             
(Temporary) Nerve block

Diet changes reducing the amount of inflammatory foods you eat (sugars and simple carbohydrates especially), and/or testing if you have food allergies or -sensitivities. Read more on food triggers for rosacea here.




PLEASE always discuss with your medical specialist what drugs and supplements you take together. A friend of mine passed away and was mixing and matching the wrong medication combination together, and I know of several other people to whom this happened. The more different meds you take together, the more intricate the ways they can interact with each other, and the more at risk you might* be to overload your system. Just be sensible and discuss it with your doctor. Most doctors seem to forget about intermittent check ups (blood work mostly), but always remind your doctor now and then to check blood levels, liver function etc, especially when you take a bag full of medication at the same time (as many of us unfortunately face daily, especially with other underlying illnesses at play). 





Dermatologists often prescribe oral and topical antibiotics as first line treatment for rosacea. It is what's in the textbooks for rosacea treatment, and often they use it as a starting point; if it works, great. If not, back to the drawing table. Oracea is low dose doxycycline and is more effective against pimples and skin outbreaks. Sometimes it can lessen background redness of the skin. Very rarely it improves flushing. Usually not.. There are specific anti flushing medications for that, but not all dermatologists are willing to prescribe them. It is (almost) always a good idea to first try your prescribed antibiotics and antibiotic cream, and then if you don't feel they help your skin enough, you can go back to your doctor and show that you did what he or she suggested, but that you need more help with the flushing and redness that rosacea can bring.

Do not get deflated if these type of antibiotics do not help your rosacea (enough). They are usually prescribed to help subtype 2 rosacea, and to combat the red pimples and skin outbreaks that come with subtype 2 rosacea. But for some, meds like doxycycline (or low dose doxy: Oracea) and lymecycline can also lower the skin redness, inflammation and sometimes even facial flushing. Metronidazole cream has the potential to irritate very sensitive rosacea skin, but otherwise can be great at reducing skin outbreaks and pimples, and even background redness of the skin. For skin flushing it has a less good track record, although there have been mentionings of it even helping for that (but rarely so). Antibiotics were once prescribed because doctors thought that rosacea was an infectious disease back in the days. That turned out not the case (as in: it's not an acute bacterial infection), but certain types of antibiotics, especially the tetracyclines, do help by lowering inflammation in the skin. There are also plenty of rosacea patients with subtype 1 flushing and burning who saw no effect from these antibiotics. Trial and error.. For subtype 2 rosacea with skin outbreaks and pimples, Soolantra or Ivermectin can also help quite dramatically.






In this good research paper, scientists summarized the treatment options for neurogenic rosacea; rosacea subtype 1 with skin redness (erythema), skin burning and flushing. It states that this rosacea subtype requires a unique approach of management. In the paper, typical symptoms and triggers are mentioned for people with this type of rosacea, based on 14 test persons:

"Prominent symptoms included burning or stinging pain (100% [14 of 14]), erythema (skin redness) (100% [14 of 14]), and flushing (93% [13 of 14]), sometimes accompanied by facial edema (skin swelling) (50% [7 of 14]), telangiectasias (visible blood vessels in the skin) (50% [7 of 14]), pruritus (43% [6 of 14]), and papules (36% [5 of 14]). 

Important symptom triggers included heat (93% [13 of 14]), sunlight (93%[13 of 14]), hot showers (79% [11 of 14]), stress (71% [10 of 14]), exercise (64% [9 of 14]), and alcohol consumption (57% [8 of 14]). Use of makeup (50% [7 of 14]), eating spicy foods (43% [6 of 14]), touching skin (36% [5 of 14]), drinking hot beverages (29% [4 of 14]), cold weather (21% [3 of 13]), and humidity (14% [2 of 13]) were less reliable triggers. Notably, 71% of patients experienced relief from cooling via fans or cold compresses or ice applied to the face or held in the mouth (10 of 14). 


In the paper it is written that of the examined patients with neurogenic rosacea, a high percentage had neurologic (43% [6 of 14]) or neuropsychiatric (50% [7 of 14]) conditions, including complex regional pain syndrome, essential tremor, depression, and obsessive-compulsive disorder. Neurovascular disorders, including headaches (71% [10 of 14]) and Raynaud phenomenon (29% [4 of 14]), as well as rheumatologic disorders (36% [5 of 14]), including lupus, rheumatoid arthritis, fibromyalgia, mixed connective tissue disease, and psoriatic arthritis, were also common.

Many patients had tried the following treatments with limited success:
*Topical metronidazole (0 of 12 were helped)
*Topical steroids (1 of 8)
*Oral antibiotics, usually tetracyclines (4 of 8).

Most patients benefited from treatments that tried to calm the burning pain down, for instance gabapentin (5 out of 11), duloxetine (4 of 6), pregabalin (1 of 4), tricyclic antidepressants (2 of 3), and memantine (2 of 2). Topically creams were only occasionally effective, for instance doxepin, glycopyrrolate, amitriptyline, capsaicin, and ketamine.

Effective were:
*Hydroxychloroquine (Plaquenil) (3 of 5)
*Beta blockers
*Clonidine

The researchers also added that this group of patients with strikingly prominent neurologic (nerve pain) symptoms, are an underrecognized subgroup of rosacea. By highlighting and formally naming this subgroup, they hope to increase awareness and recognition of these patients and aid the practicing dermatologist in their therapeutic management. The cause of rosacea is complex, poorly understood, and likely multiple causes and factors, including bad functioning blood vessels in the facial skin and with most likely an auto-immune aspect to it. Also the nerves in the skin are no longer functioning as they should with this rosacea type. There is an element of abnormal response to heat and an increase of inflammation in the skin. And the injury of the nerves in the skin of rosacea patients with this subtype 1, also leads to dysesthesias: an abnormal sensation in the skin, of pain, skin burning, wetness, itching, electric shock, and pins and needles. It is sometimes described as feeling like acid under the skin.


"Patients with prominent vasomotor symptoms, defined clinically by flushing and telangiectasias, may respond to vasoactive medications, including β-blockers, alpha-1 adrenergic blockers, and calcium channel blockers. In addition, laser- and light-based therapies seem to be more effective in this subset of patients. Patients with inflammatory features such as papules, pustules, or edema may respond, if symptoms are mild, to traditional topical therapies such as metronidazole, azelaic acid, or sulfur. Systemic antibiotics and antimalarial agents used for their anti-inflammatory effect may be useful for nonresponders. Finally, patients with dysesthesia out of proportion to flushing or inflammation can be difficult to treat and require a unique approach first used to treat disorders such as complex regional pain syndrome and neuropathic itch. In our experience, neuroleptic agents (eg, gab-apentin, pregabalin), tricyclic antidepressants, and pain-modifying antidepressants (eg, duloxetine) are the most effective. N-methyl-D-aspartic acid receptor antagonists (eg, memantine), systemic antibiotics, and other topically formulated medications (eg, ketamine, glycopyr-rolate, capsaicin) may be helpful in certain cases. Because of the associated heightened sensitivity to heat and sunlight, laser- and light-based interventions should be used with caution. Because our understanding of this enigmatic subclass of rosacea is extremely limited, further research is clearly needed to better describe the underlying patho-physiologic characteristics and to identify additional effective treatment methods."






What can distinguish rosacea from many other flushing disorders, which are mostly discussed here is:

*Rosacea usually develops in your 20's or 30's, or even during menopause for women (although teenagers and even kids can have rosacea! Mine started at age 19).
*The rosacea redness usually worsens with time 
*The redness can be seen on the cheeks but also the chin and nose (and even forehead and ears for some)
*People with rosacea often have a pale complexion and a tendency to blush 
*In the earlier stages the skin can become red, yet it also can look pale again once a flare is over. Flushing flares can last short or longer. Only with time the redness usually can become more permanent.
*Generally there is a worsening of symptoms after sun exposure, drinking alcohol or eating certain foods. 
*Skin becomes often dry and flaky
*Skin often starts to feel hot or painful (burning) over time
*The flushing isn't accompanied by sweating
*Papulas may appear on the face
*The face can become a bit swollen from the redness, called edema
*When a flush is triggered, it can take a long time to disappear again, typically longer than a few minutes.   
* In a very recent survey, conducted by the NRS nearly 93 percent of 1,709 rosacea patients said they had experienced physical discomfort as a result of the disorder, with burning and stinging the most commonly cited pain sensations. Among the other physical discomforts experienced by the survey participants were tightness, cited by 45 percent; swelling, named by 44 percent; tenderness, mentioned by 41 percent; tingling, 32 percent; prickling, 25 percent; and headache, 19 percent.









About my anti flushing medication. Here someone thought I used a photo filter to look more red haha. No filters, I look red enough as it is, and I don't have a smartphone so taken with regular camera (only 2 photos at the time I gave some sort of a fancy frame online). For everyone who suffers from rosacea flushing, burning and intense redness of the skin; there are different ways to try and treat your symptoms. Sometimes antibiotic creams or pills work, but for the flushing problem, they do not always cut it. IPL and laser can also be very effective, but they are fairly expensive and come with their own set of risks (only a small percentage of patients have side effects from them, but it happens, so always make sure to find a qualified and experienced doctor to use the laser machines and to do test patches first on your skin).
Before and after medication use:




There are also specific medications that help reduce the redness and flushing. They have been used successfully for a long time to treat menopausal hot flashes, and also often help for rosacea flushing. Clonidine and propranolol lower your blood pressure a bit, and make the blood vessels in the face (and hands and feet; the extremities) close up more. Propranolol also lowers adrenaline release in the body, and that can help with 'flight and fright; flushing; the type you can get from anxiety and stress. As a result, redness and flushing decrease. Xyzal is an antihistamine, and histamine is a powerful blood vessel dilating chemical in the body. Especially helpful for rosacea patients with underlying allergies, but antihistamines can also help when you have food triggers. Certain antidepressants, for instance mirtazapine but also certain SSRI's, also help reduce facial flushing and redness. They work more on the central nervous system, calming it down. All are prescription medication. Sometimes dermatologists are willing to let rosacea flushers and burners try one or more of them. My London professor prescribes the combination clonidine + propranolol + mirtazapine at a low dose for his severe flushing and burning patients, with success. Just to inform flushers about this option. Added pictures of me before I started these medications and after (I still have flushes and flares, but they used to be 24/7, and now they are only from specific triggers).






Pictures of rosacea patients






David Pascoe wrote a post about potential causes for facial flushing.  

In this post he included a table with potential flushing causes:

    Benign cutaneous flushing
        Emotion
        Temperature
        Food or beverage
    Rosacea
    Climacteric flushing
    Fever
    Alcohol

Uncommon, serious causes
    Carcinoid
    Pheochromocytoma
    Mastocytosis
    Anaphylaxis

Other causes
    Medullary thyroid carcinoma
    Pancreatic cell tumor (VIP tumor)
    Renal cell carcinoma
    Fish ingestion
    Histamine
    Ciguatera

    Psychiatric or anxiety disorders
    Idiopathic flushing
    Neurologic
        Parkinson’s
        Migraine
        Multiple sclerosis
        Trigeminal nerve damage
        Horner syndrome
        Frey syndrome
        Autonomic epilepsy
        Autonomic hyperreflexia
        Orthostatic hypotension
        Streeten syndrome
    Medications

    Very rare causes
    Sarcoid, mitral stenosis, dumping syndrome, male androgen deficiency, arsenic intoxication,
    POEMS syndrome, basophilic granulocytic leukemia, bronchogenic carcinoma, malignant histiocytoma, malignant neuroblastoma, malignant, ganglioneuroma, peri-aortic surgery,
    Leigh syndrome, Rovsing syndrome


Please also check my blog post "Other conditions that cause facial flushing". 






Steps to take for Evaluation Of The Patient With A Flushing Disorder

These are some tips for doctors about diagnosing patients with flushing symptoms.
 He or she needs to first look at clinical characteristics. Are there certain agents that trigger the flushing? This would suggest an underlying systemic disease as the cause for the flushing, such as mastocytosis and carcinoid syndrome.
Morphology
  • Is there a basic feature that comes and goes?
  • Is the redness patchy or confluent?
  • What is the color of the flush?
  • Is there cyanosis?
  • Is the flushing preceded or followed by paleness?
The morphology of the flushing may suggest not only the cause of the flushing but also, in the case of carcinoids, the anatomic origin of the disorder.
Associated Features. These may include respiratory symptoms, gastrointestinal symptoms, headache, urticaria, facial edema, hypertension, hypotension, palpitations, or sweating.
Temporal Characteristics. Temporal characteristics are the frequency of the flushing and the timing of the specific features during each flushing reaction. Important information can be obtained from a 2-week diary in which the patient records how long and how severe the flushing events were, and lists exposure to all outside agents. When the diagnosis remains obscure after evaluation of the 2-week diary, the patient can be given an exclusion diet, listing foods high in histamine, foods and drugs that affect urinary 5-HIAA tests, and foods and beverages that cause flushing. If the flushing reactions completely disappear, the doctor can start to reintroduce the excluded items individually, one by one, to identify the food item that causes the flushing. If the flushing reactions continue unchanged, then further metabolic workup may be undertaken.


Always make sure when you have rosacea that you maintain a gentle skin care regimen. Try to identify your triggers and avoid them. Look together with your dermatologist for treatment options. For instance medicationnatural anti inflammatory treatment optionsdiet or laser/ IPL. Treating your rosacea successfully will help you achieve and hopefully maintain remission.










Try to identify what triggered your flair up

And try to avoid it, if possible. Some common triggers for a rosacea flair, with hot burning skin, are:
*sun exposure
*hot temperatures
*stress or emotions that make you feel worked up.
*if you have allergies, things like pet dander, pollen or perfumes might provoke a flare.
*intense exercise
*hot baths or drinking hot drinks
*skin care products that contain irritants. This depends on your skin sensitivity, but things to look out for are parabens, perfume/fragrances, essential oils, dyes and strong acids. Also be careful with sodium lauryl sulfate, formaldehyde releasers -they preserve a product against bacteria, mold and fungi- for instance bronopol, diazolidinyl urea, DMDM Hydantoin or quaternium 15. Foaming agent cocamidopropyl betaine is an irritant too, as well as wool related products (lanolin, wool fat or wax and wool alcohol. See this Paula's Choice article for more information on skincare irritants.
-Strong cold winds
-Some people find that sitting long times behind a computer screen flares their rosacea too.
The same goes for fluorescent lighting, which can actually increase inflammation in some cases.

Also see your medical specialists to be sure you suffer from rosacea, and not from one of the many other medical conditions that can cause facial flushing. Also, it is always good to have blood tests done to see if you have vitamin or mineral deficiencies, including low vitamin D levels, which is very common for people with rosacea or who otherwise avoid the sun. And don't forget to test for HIGH BLOOD PRESSURE, which can really affect facial flushing and burning, and should be brought down to normal values. 








Is your skin very dry? Dry skin is more prone to flushing and redness. Consider using a moisturizing cream or if your skin is too sensitive for this, consider a humidifier in the house. And drink plenty of water.

I cannot really use creams on my face, as they all seem to make me more red and irritated, but this is rare and most people with rosacea are perfectly able to find a soothing and irritant free moisturizer. Instead, I try to keep the indoor air humid enough. For some people, high humidity is a rosacea trigger, but for me it is soothing on my skin. Just like physical sweating seems to make my skin more pale. Complete lack of sweating can in fact trigger skin redness and flushing. Therefore I use a cold mist humidifier. You can adjust it to just how high you want the humidity to be in your house, and because it is cold mist, it will not increase the indoor temperature. It is considered 'still standing water' however, so it's important to thoroughly clean the thing every other day. You don't want to spray mold remnants on your face through the air, after all! :)






Take a good look at your diet, and whether or not some of the foods you tend to eat might make you flare up more

I wrote a blog post about food triggers, and it got grossly out of control after I kept adding more and more updates to it, so I will not expect anyone to dig through that whole thing. In summary: food triggers are very individual, but some general rules of thumb are that alcohol, spicy 'hot' foods and foods very high in histamine (think old ripe cheeses for instance) are most likely to flair your rosacea. Otherwise, it's a matter of trial and error, unfortunately. For some people, cutting out foods high in sugar will considerably affect the redness and flaring of their skin. Likewise, grains and/or dairy can negatively impact the skin. You can eat very healthy still by cutting those food groups out, focusing on a high protein (meat and fish, ideally organic, so they contain as little chemical hormones and antibiotic residues as possible) and high vegetable diet. I notice an incredible difference in the severity of my rosacea when I stick to this diet. Problem is; I love sweet stuff! And bad stuff in general, even savory bad foods are a temptation after 5 days of vegetables, fruits and meat. I try to snack on things like dates, coconut, scrambled eggs, olives, melon, the odd rice flour pancake. I make ice sorbets from fruits or rice milk. A day or two of very high carbohydrate intake (delish!) will typically make me more red and flared the next days :/ I try to stick to wholegrain brown rice and sweet potatoes therefore and skip the regular potatoes (YES, crisps count for them too :P ) and all white flour products. This low carbohydrate diet is part of the Paleo Diet, but also of a diet linked to the Auto Immune Protocol.

Again, this is personal and some people notice no change whatsoever in their skin when on a diet. But if you feel your face is flaring and burning and awful lot of times, it is worth doing an elimination diet... What my doctor recommended at the time, is to start with a couple of 'safe foods'. He said; white rice, chicken and salad. Of course, one of those three could be in theory your food trigger, but at least it will give you a short time to figure that out, with only 3 food groups. Then, if all goes as the doctor planned, you will be able to add one new food item to your diet every day. Now, the problem is of course that not everybody has an instant skin reaction to a trigger food. Some even say that it takes several days for their skin to react. You can take it slowly of course with new food introductions. But most people might simply not have the time for this slow paced food experiment. You can always take a look at your normal diet and try to cut out the worst offenders of the food world (in terms of rosacea); alcohol, spices, old cheeses and other high histamine food (yogurt is also one of them), gluten, dairy, processed (fast)food and high sugar content. Basically; most of the good stuff. It can make an immense difference to some people with rosacea however. There are many stories of big skin improvements, once people started to eat more 'clean'. I have a feeling that people with subtype 2, papulas, tend to maybe see a bit less of a direct food related trigger effect than those with general (non fixed) redness and flushing. Subtype 2 sometimes responds very well to treatments aimed at eliminating demodex mites. ZZ cream used to say it helped but now there is a much more straight forward and reliable cream on the market, called Soolantra. I'm working on a blog post on this. When your skin reacts well to Soolantra and it clears it, then you might really have no need to cut out all sorts of foods in your diet. But ypically, the facial flushing and burning is more difficult to treat and Solantra isn't designed for these symptoms, although it does seem to help sometimes!








Protect yourself from the sun, with sunscreen, hats or if need a sunbrella
 








And try to stay positive. Inform yourself as much as possible on rosacea forums or in online groups, but don't fear the worst right away.

Some people get really anxious and demotivated from reading blogs like this one, or from online forums. Just because others might describe a severe case of rosacea, for instance, doesn't mean that you yourself will end up that way. The sooner you can control your symptoms and avoid worsening, the better. But even if you can't; the idea that rosacea always progresses to a terrible end state is found to be untrue, for most patients. Try to see information as more power for you, to fight this skin condition. 

Someone wrote this the other week on The Rosacea Forum, and I very much agree:
"The way I cope is by refusing to give up hope. I keep on learning all that I can about this disease and trying every remedy that I see on here that makes sense with the medical knowledge that I have. I keep hope that one day I will go back into remission. It happened to me once for about two weeks. I've heard of very few cases where it was a doctor whose tireless research found something that brought someone a lot of relief. Usually it is the patient doing a lot of research on their own. I'm not saying not to see doctors. Find a doctor who will listen and take you seriously when you take your ideas to them. Find one who will work with you to find relief and make this livable, but know that you may have to do a lot of the research on your own. Most doctors simply don't take the time. They don't have as much at stake in this as we do. I've learned so much from this group and other websites that my derm had no idea about. It was here that I learned about the paleo diet that has helped me so much, for one thing. My derm had a list of about 7 foods that can be triggers in some people. I discovered that the list of potential food triggers is much more vast than that. Feeling helpless is one thing that can make people want to give up and feel suicidal. Put that energy into learning new things that might help. That's what I've been doing and how I cope."

In general, try to stay active. Don't cut out your friends and family, despite feelings of declining self worth perhaps, or the desire to close yourself off from everything and everybody. In the end, the way forward for most people is to start spending time with loved ones again, letting people in, receiving support and dedicating time and energy again on your work, hobbies, talents. It is very time consuming and stressful to learn to deal with rosacea and to educate yourself as well as you can, and this can feel very overwhelming at times. It is normal to feel depressed at times about the way your skin looks and feels, and about the many lifestyle changes it often demands. But when you feel you are supported and that there are things you can still try, it will most likely improve your mood and your resilience. I wrote earlier about dealing with the isolation that chronic disease brings. I'm not the most optimistic person myself by nature and have periods of depression, but these things have all helped me to get going.





There are also very good and mostly welcoming forums and online patient groups. Here are a couple:

The Rosacea Forum
Rosacea Support Community
The Rosacea Research and Development Institute
A members only Rosacea in English facebook group
A members only Make-up for Rosacea facebook group
A members only Rosacea Healing from the Inside Out facebook group







This is what helped me so far 

after struggling with rosacea since my early student days in 1999:
-Figuring out what my particular triggers were. They can be different for everybody, and it takes a bit of time and frustration usually to figure your own skin triggers out. In my case they are indoor and outdoor heat, sunshine, stress, chemicals in perfumes and other cosmetics. Certain foods and drinks are also a trigger for me, including alcohol, spices, chemical additives (like E-number preservatives). Foods high in histamine trigger my facial burning and redness as well as foods high in sugar. Gluten make my bowel condition worse and in effect gives me more skin inflammation, including papulas (I normally never get them). For me personally, dairy also makes me more red, as do old cheeses. I sit long long hours behind a computer for my work, but I try to have the brightness set to low, or dim the screen even more with a free downloadable dimmer device.

-Trying out different rosacea treatments. Some worked better than others. Some set me back, but others helped me to improve matters. It has been painstakingly slow and demoralizing at times, and I am still looking for improvement, as I haven't cured myself by any means yet. Things have just improved compared to 2005, when all I could do was use coldpacks and fans and suffer. Always severely red and burning, my blood vessels seemed to have gone ballistic.
I tried so far:

-Traditional Chinese Medicine  (didn't help me)

-Acupuncture  (Unfrt. didn't help me, but has helped many people with a host of different health issues. I am not sure it can help with the more serious and severe medical issues, but it won't harm you either - if done correctly hehe)

-Natural herbal therapy (helps me clear eczema flares but never really seriously helped me with my facial flushing, personally. Nevertheless, there are anti inflammatory supplements like fish oil/omega 3, flax seed, boswellia, and a host of others, which do help beat inflammation on a low level in the body.)

-3 months of oral doxycycline therapy (made my flushing and redness worse and gave me added bowel problems long term, BUT these treatments tend to work very well in fact for many people with rosacea. Trial and error, try try try, with the help and cautious eye of your medical specialist.)

-Diet changes (made a big difference for me).

-All sorts of creams, aimed at treating rosacea, or reducing redness. (The first couple of years my skin handled creams well and they helped me, I think. After about 5 years, my skin suddenly became hypersensitive to any topical and burnt. Dermatologist told me she wanted me to stop all cream experiments and leave the skin alone completely. This helped me to calm things down, and I don't use topicals anymore now, with exception of deluded jojoba oil around my eyes, mouth and forehead.)

-Red Light Therapy. I didn't give this enough time and trials, as I used it in my worst year to date, when I flushed 24/7. I have found my handheld unit back and will try it again these months, to see if by now it works better for me in reducing redness and flushing. Now that I use medication to reduce my symptoms, and now that I no longer flush from every little twitch.

-IPL. I had test patches of all sorts of lasers done over time, which didn't give me clearer results. I had read some patient reviews on the online rosacea forums about a certain Dr Patterson in England and visited him. Long story short, he didn't do test patches and I had a full face IPL treatment done in 2005, which worsened my rosacea a lot, until this day. I can't believe I just went for a full face treatment tbh. Ever since I am red and I flush all over my cheeks, whereas before the full face treatment I only flushed on the upper cheeks. Also, my general redness got worse from it and I flush a lot quicker and longer now.

Nevertheless, there were so many good results made by rosacea friends online, that I couldn't believe all laser and IPL were unsuitable for me. In the years that followed, my dermatologist in Holland and a hospital laser specialist, Dr. Leeman, tried out various laser machines on my skin, in small areas on my cheek. None of them gave any improvement and most gave me several weeks of inflammation and deep redness. He was a bit startled, as most of his patients with mild rosacea symptoms improved with his laser treatments. He thought my skin was very sensitive and basically too sensitive for laser, and my flushing problem was too severe for laser. I don't really have a lot of broken blood vessels, just a couple of tiny red dots here and there from years of flushing. But nothing clearly noticeable. And often, broken blood vessels on the skins surface as easier to treat than deep flushing, although it is possible and many people with rosacea had success with either laser or IPL, both in terms of skin redness and flushing.

I wasn't quite convinced yet by then and reckoned I just needed to see a specialist abroad (because let's face it; everything coming from abroad might sometimes seem better, when you feel desperate about something). I visited Dr. Chrouch in Swindon, UK, who was in fact very knowledgeable and extremely kind. He agreed on doing several rounds of test patches and he was very cautious. Lasers didn't make any dent in my redness but his Lumenis One IPL machine did. However, once we did a full face treatment with the same settings, it made things worse again, and I needed treatment from my local dermatologist to get the severe inflammation down in the month after. I don't think that full face treatment made matters worse in the long run, perhaps a little bit, but nothing like the first IPL round with the other English doctor did. Dr. Chrouch in the end concluded that I have extremely reactive rosacea and extremely sensitive skin. That the first IPL sries was done with the wrong machine and the wrong settings and energy, and triggered massive inflammation and new vessel growth, but that IPL in general wasn't for me, in his opinion. The only way could, potentially, be to zap small areas of my face at a time. Not a full face treatment anymore (but only because my face reacts so hysterically to the laser, normally full face is not a problem if you checked the right settings first). Unfortunately Dr. Crouch passed away recently, much too young, on September 10th 2016.

I used to be able to live more or less a normal life before. I never used a fan. Ever since, I have to have a fan on almost all the time, and I can't handle higher temperatures much. I flush at the drop of a hat, but with lifestyle adaptations I have adjusted, in order to just keep my face as pale as possible. When I'm not flushed, I have less burning sensation in my face. But my life has really changed since the IPL treatment, even more than it had already changed since my rosacea started. It's depressing, but I try to make the best of things. I walk in the evenings, long walks when there is no sun and the temperatures are down. I can meet people as long as I don't overheat myself. I can bring my flushes down with the things mentioned above (fan, cold packs, trigger avoidance), and I no longer suffer from heat and pain 24/7.

Medication I saw my dermatologist Prof. Tony Chu (Hammersmith Hospital, London) at the end of 2005 and he put me on a combination of 3 anti flushing medications: clonidine (0,075 mcg 3 times a day), propranolol (40 mg 3 times a day) and mirtazapine (between 20 and 30 mg a day, I started with 30 mg for some years but now reduced it to 20, as I find it helps me more at this low dose). I also take an antihistamine called Xyzal (10 mg a day). They all helped me a lot! People sometimes ask me how much it helps me, and it's hard to make percentage estimations, but I couldn't be out without a fan before and flushed literally all day and evening and night, and now I can stay non-flushed as long as I stay cooled and go out and not be one hot burning mess instantly. I'd say it improved my flushing by 60% perhaps. Some months it's better than others and this summer was not good, as it was way too hot and for too long a time, but in fall and spring, with mild temperatures, it's all a lot more manageable now.  I wrote here about the medication that helps me with my rosacea symptoms.





I also tried a number of other medications, which I stopped again because they didn't help my rosacea or because they stirred my flushing further up. 

They help many other people with rosacea, however. This is just a personal list of what didn't help me.
I tried:
-amitriptyline
-neurontin
-Lyrica
-doxycycline
-minocycline
-azythromicin
-cetirizine
-mepacrine
-plaquenil
-mastocytosis medication; bilastine, pantoprazole and zaditine.

I use make-up very very rarely, maybe twice a year. I use La Roche Posay make-up for sensitive skin then, I wrote about it here and here.

I'm a bit gutted about it all, especially when I read success stories. I just want it to work, and get on with my life like it used to. With so many different laser and IPL machines to work with, it's very tempting to think I just haven't found the right practitioner and machine and setting yet. So, in 2011 and 2012 I gave it another shot and saw a Melbourne specialist called Dr. Goodman, who had helped a friend of mine clear his rosacea. He did two rounds of test with the V-beam perfecta, both on a lower part of my cheeks, but was also a bit doubtful about it all, and unimpressed with the test patches, which didn't show anything. For now, I decided to just settle for the status quo.. It's very unpleasant to still burn and flush at the drop of a hat and to always have to stay cool, it feels like I'm a caged polar bear in a South American zoo at times, but it has taken mostly all my time and energy and concentration in the past 17 years to find treatments and to try out things for my rosacea. It has gotten in the way of eagerness in respects to career, in the way of family, in the way of my social life. I get overwhelmed when I feel I need to keep trying new things, as I get such deteriorations so quickly, meaning bright red burned up and house ridden. For now I just stick with my medication, my lifestyle alterations. I'm in my mid-later 30's by now, 37 next month, and I just get tired from it all and spend my time on my work now and my friends and family, and reading books and writing things and traveling a bit when possible. Acceptance is hard when you haven't controlled your disease yet. And online forums and facebook groups are wonderful in terms of support and tips, but they can also show you the successes of others; success with treatments you might have already tried - and failed. It's hard to find acceptance and when I read back my old 20-something desperate forum posts I see hat most 'newbie's' have; fear, panic and searching for a solution, asap. No matter what it takes. It's hard to accept things that aren't normal, or right yet.









So, in summary:

Rosacea is said to typically start in people's late twenties, thirties, forties or even onwards. However, the sudden onset can be a clue for rosaceaOther patients had a long standing tendency to blush or get red as a youngster and found that this developed into rosacea with age. A good portion of rosacea patients also seem able to trace the rosacea back in their family history, and know parents or grand parents who had rosacea symptoms. However, this definitely isn't the case for everyone. (Nobody in both my families have rosacea, only eczema issues). The use of Accutane/Roaccutane or (Hydro)cortisone cream can also have been the trigger for rosacea to erupt. When people develop red, burning and flushed skin or bad skin rashes after use of any of these creams, steroid induced rosacea should be the first suspect. Some doctors insist they don't see it in teenagers or youngsters, but the forums are proof that this is not correct. I developed rosacea virtually out of the blue at age 19. Rosacea tends to wax and wane, and can flare badly, only to calm down again some time later. Flushing also tends to be temporary initially. Some people with rosacea have a lot of baseline redness, but those mainly affected by the flushing can have relatively pale and normal looking skin when not flushing. This is another characteristic of rosacea.

The redness of rosacea is usually not sharply marked from unaffected skin. So the redness usually blends in somewhat, and the flushing can affect only part of the cheeks, usually the inner cheeks closest to the nose. With exception of those with permanent redness (which normally takes time to gradually build up with rosacea), this redness can also subside rather quickly when you cool the face. People with rosacea have typically different parts of the face affected. Redness and
flushing tend to to start on the cheeks for many, although especially males also find their nose and ears affected quickly. The chin can also get red with time, and even the forehead. This is another characteristic of rosacea, although not an entirely exclusive one. (Flushing, burning, swelling and redness of the hands and feet is usually Raynaud's Syndrome, and has to do with unwanted widening of the blood vessels there. It usually occurs in winter and many rosacea patients have Raynaud's on top. I got tested for it in my university linked hospital and tested positive). Rosacea tends to give both facial flushing and redness ánd small red paps and pimple like eruptions, generally without white heads. Some people mainly get the one, others the other (subtype 1 and 2) but most people with rosacea experience both symptoms at some point, more or less severe. For instance, I have subtype 1, with erythema, burning, redness and flushing and very little outbreaks, but when I flush badly or eat something wrong, I also get red dots that look like little red pimples without a real white head (but often with some fluid or very fluid thin puss inside).

Most flushing reactions result from benign causes. However, since flushing may be the presenting sign or symptom of several life-threatening conditions, it it important to discuss your symptoms with your doctor. If needed, he or she will do more tests to rule out some other diseases. For instance systemic mastocytosis, carcinoid syndrome and other tumors. Read also this link from the Rosacea Org.






Coexisting health problems which people with rosacea often mention
Many people with rosacea face coexisting health problems at some point. Bowel conditions are most mentioned, as well as allergies, thyroid problems and hormone disturbances. One of the problems most rosacea patients will encounter, is that most dermatologists are not very receptive to these coexisting conditions. Many patients have complained about dermatologists who are unwilling to listen to their worries about this, are unwilling to send them to collegues, like an immunologist or neurologist, for further diagnostics and even if patients have a diagnosis of conditions like Raynaud's syndrome or colitis or Crohn's Disease, many doctors will fail to see them as potentially related to the rosacea symptoms. This is very frustrating.

My personal experience with coexisting health conditions

I have seen 3 immunologists and the last one was a professor who did extensive bloodwork to see what auto immune and inflammation makers would come up, and they were very few actually, despite us expecting a lot more. I have been tested on ANA levels and they have been creeping up over the years, from 0:20 to 0:40 to 0:80 now (equals a positive for auto immune activity, but it didn't worry the immunologist one bit). I was sent to all of them by my prof dermatologist, a good one who kept an open view and ackowledged he didn't know enough about it all and tried to cooperate with some other specialists (immunologist, internal health doc and a neurologist) but nobody really worked together in the end and it resulted in some independant tests from all involved, diagnosis Raynaud's, colitis, arthritis onset, slightly raised ANA markers, some pro-inflammatory T-cells etc, - all half vague, slightly out of whack stuff but nothing alarming enough - and that was it; no plan of action, no further cooperation and no treatment, apart from the anti flushing medication I already took.

I think this is too vague for most scientific based specialists and demands too much speculation from them to even want to dive into the cosharing of diagnostics with other specialists. I doubt many will come up with alarming coexisting health issues, apart from some people with clear cut thyroid problems amongst other things. I think often people with rosacea here complaint about other halth problems, like bowel  issues and allergies and inflammation issues, but not many doctors are paying much attention to that. That makes me pretty disappointed and demoralized. I wished just more doctors were willing to step up and really aspire to get a better overall picture of all the other little things going wrong inside us, which seems to eventually result in the rosacea, among other symptoms.




No comments:

Post a Comment

scarletnat@gmail.com, http://www.facebook.com/scarlet.nat.3