Do I have rosacea? What to look for
Rosacea comes 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 say it's like having bad sunburn; like the skin on your face is many degrees too hot, glowing, burning, with heat crawling up. Radiating heat. There is also often some degree of swelling and stinging of the skin. 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 flushing and 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 someone's skin go red in a matter of seconds or minutes, when triggered. This specifically 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' (flush) from rosacea takes quite a long time to subside. Much longer than it takes for a blush to go away. 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 general guidelines and symptoms can perhaps 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.
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 ocular rosacea. This seems to happen more often with the subtype 1 flushers. In some people, rosacea's eye symptoms precede the skin symptoms but more often it follows skin inflammation and flushing. It is typically hard to treat, but your dermatologist might be willing to 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 dosage; too high a dose and you might develop more or the initial onset of 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. Same for the sensations of heat across your face. Over time, the redness tends to become ruddier and more persistent, and visible blood vessels may appear. Flushing can also happen more often or for a more prolonged time. Left untreated, bumps and pimples can also start to develop, although not everyone has this problem and there is information out there that the increased body temperature or auto-immune disturbances can make the skin more vulnerable to demodex mite infection for instance, which will severely worsen the breakouts. Luckily there is something that you can do about that however. The flushing and burning side of rosacea subtyle 1 are much more difficult to properly treat, unfortunately. I use this blog to inform you about what I am doing to try to live with this near-constant burning and flushing, and also to pass on what helps others. Scroll down for a more detailed explanation of how facial flushing exactly happens in the body. I wrote a lot more about the different medical conditions that can cause facial flushing in this blog post.
Subtype 2 rosacea is often also called “papulopustular rosacea”. It is the most 'classic' form of rosacea, with skin redness that is accompanied by acne-like breakouts that are not like acne as they don't have a lot of pus typically or blackheads. These breakouts are therefore called pustules or papules and they may come and go over time. Patients with this subtype of rosacea tend to also have sensitive skin that can feel like it's burning. Unlike rosacea subtype 1, there are quite a few different types of treatments and medications studied and available for subtype 2 rosacea, which have been extensively studied and approved for this common form of rosacea, which can also be used on a long-term basis to prevent recurrence of symptoms. They include topical and oral antibiotics, ivermectin, azelaic acid and low dose roaccutane.
Neurogenic rosacea
Neurogenic rosacea
I think doctors now started to differentiate another subtype, neurogenic rosacea, which means rosacea accompanied by bad nerve pain and burning sensations, either from redness and flushing, or unrelated to that. It is a very peculiar subtype (one I also suffer from), and unfortunately not much is yet known about it, nor it is studied a whole lot yet. I wrote a separete blog post about this subtype here. Neurogenic rosacea is mostly seen in people who have subtype 1 rosacea, with redness of the face and flushing, and less so in subtype 2 patients. Constant flushing but also inflammation of the skin and blood vessels can cause the neurogenic onset, as it puts pressure on the small nerve endings in the face, making them hypersensitive. Inflammation of the trigeminal nerve, which is located in the facial skin and helps create our facial sensations of pain, can also be affected and play a role in burning pain of the skin. And long term nerve pain can also create a nerve 'memory' for this pain, making it very hard in the long run to stop the cycle of pain. The constant stimulation of the nerves in the facial skin from the pressure of dilated blood vessels and sometimes also from the edema -swelling- that rosacea flushing can give, sometimes also leads to a condition called dysesthesia: an abnormal unpleasant sensation felt when the skin is touched, caused by damage to peripheral nerves. If the nerves are irritated, hyper-sensitive or damaged, it can alter the way certain sensations, such as light, touch, and temperature, are felt. But there are also other ways in which the nerves in our face get sensitized more, for instance because organic chemicals like norepinephrine are released by an overactive central nervous system. And in return, damaged nerves can also affect the way the skin looks: it can cause a change in color or texture, or making the skin more pale, red, purple or spotty, or looking thin and shiny. In my case; I used to flush and go red in the face without having the additional burning feeling. This was in the early days of my rosacea, around age 19-21. But now it only takes a little redness and blood vessel dilation to make the nerves of my face angry and for my face to feel on fire and with uncomfortable pain.
Subtype 2 rosacea is very different from subtype 1
Subtype 2 is more often linked to skin barrier dysfunction, demodex mite overgrowth and can even have a bacterial component, whereas type 1 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 symptoms, and how to successfully treat it. Luckily, a lot of people with rosacea can eventually find a treatment that works for their skin. Many of us eventually succeed in calming things down or even going into remission. Granted, the flushing subtype 1 tends to be a bit more difficult to treat, but there are options there also, 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 that it debilitated them in their everyday life 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. The damage of that treatment gave me a face full of weakened and dilating blood vessels, which I still struggle to live with today. 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 you 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 want to try over time. And to start testing things methodically and find out for yourself what works and what doesn't.
Subtype 2 is more often linked to skin barrier dysfunction, demodex mite overgrowth and can even have a bacterial component, whereas type 1 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 symptoms, and how to successfully treat it. Luckily, a lot of people with rosacea can eventually find a treatment that works for their skin. Many of us eventually succeed in calming things down or even going into remission. Granted, the flushing subtype 1 tends to be a bit more difficult to treat, but there are options there also, 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 that it debilitated them in their everyday life 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. The damage of that treatment gave me a face full of weakened and dilating blood vessels, which I still struggle to live with today. 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 you 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 want to try over time. And to start testing things methodically and find out for yourself what works and what doesn't.
How to distinguish rosacea from many other flushing disorders
*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 predominantly on the cheeks but also the chin and nose (and even forehead and ears for some).
*People with rosacea subtype 1 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 usually accompanied by sweating.
*The face can become a bit swollen from the redness, called edema
*When a flush is triggered, it typically lasts longer than a few minutes.
*Papulas may appear on the face.
* 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.
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 medication, natural anti inflammatory treatment options, diet or laser/ IPL. Treating your rosacea successfully will help you achieve and hopefully maintain remission.
When you struggle with a red and flushed face, I would personally approach this problem very strategically, which helps you eliminating possible causes and treatment options, and might also help you feel a little bit more in control in a situation where your skin feels definitely out of control. Trying all sorts of treatments at the same time will only result in you becoming confused about what is and what isn't working for you. It can be tempting to throw everything at your rosacea at once, but you often get a better idea about what to continue with and what to ditch, when you try one thing at a time and give your skin time to react. This type of skin condition can cause a lot of anxiety and depression. That is normal. When your skin used to be a protective shield and something that was just there, functioning as normal, it can be devastating when it suddenly stops protecting. Stops functioning as usual. I found it very difficult to accept that I have to babysit my skin nowadays, as it won't protect me as it should do. And that is a frightening sensation.
Usually when a dermatologist diagnoses you with rosacea, he or she will do this based on both the clinical symptoms you present (how your skin looks and feels, what your triggers are etc), as well as ruling out other conditions that can give a red or flushed face. Ideally a derm rules out at the very least Lupus and Carcinoid Flushing. Both can be tested for with blood tests (unlike rosacea). Depending on your triggers, a doctor can also test on things like allergies, mast cell disorders and hormone or thyroid disorders. I also had full immunology blood work done, which resulted in some indications for systematic auto-immune related inflammation issues in my body, but which were not conclusive of big issues. The same for my tests for lupus; I had them three times now over a ten year time span, and my ANA levels (one of the things they test you on; antinuclear antibodies) have been doubling since, now at 1:80, which indicates some auto-immune activity, but the level is not high enough to diagnose me with something like lupus. It is mostly important to have these tests in order to not miss a blatant positive diagnosis of an auto-immune disease like lupus for instance, or one of the other mentioned health conditions. But there are also neurological tests that can be done in the search of a solid diagnosis, for instance MRI/CT testing, X-rays or lumbar punctures, to look for serious infections of central nervous system conditions. In reality, VERY few rosacea patients get one or two of these tests, let alone all of them. You have to be blessed with a wonderful proactive dermatologist or general practitioner, or be very loud about what you want from them. And then there is always the issue of the cost of it all. Even in this part of the world, with wonderful (but expensive) health insurance, doctors tend to be hesitant to spend too much money and time on tests that aren't explicitly indicated for your symptoms.
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
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.
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 mine has 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, heating up too much and of 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 considered more common 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.
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. In my blog post about medication, I provide such 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 the facial burning and flushing of rosacea patients. The medication that my London professor uses to treat his rosacea patients, is not specifically designed for rosacea. Yet they have a long standing record to treat other conditions that have overlapping symptoms, of which we can benefit. Luckily there is a lot more research done on hot flashes, which also has an overlap with face flushing. I would advice you to select some medical research articles that support the use of certain medication when it comes to hot flashes or face flushing, and show it to your doctor. Doctors 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 with decades worth of written rosacea patient information and experiences. 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 can see what your skin can look like on an a bad day. It is also important when you feel nerve pain or burning, that you emphasize this to your doctor. Rosacea is all too often seen as a primarily cosmetic condition. And though it can also give patients pretty debilitating neuropathic pain. 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 cheeks in my early days, yet it 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.
I haven't found a very good list of creams online yet, although there are many posts made about 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 reduce 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 also help by lowering inflammation in the skin. So although some people with subtype 1 rosacea also see improvement on them, these types of medicine are arely effective for facial flushing and burning. All tetracycline antibiotics I tried over the years made me personally a lot more red. And unfortunately for some, they come with side effects. Especially if you take them long term. It is best for long term use 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 for the skin, but it does not interfere with normal bacteria functioning in the digestive system. At a higher dose, oral doxy will kill off good bacteria.
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
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. Some people have permanently worsened their rosacea after the use of these creams. I would not recommend them for rosacea, even though some people report good results.
Other creams, for instance sulphur cream or ZZ cream used for subtype 2 rosacea with skin outbreaks.
Corticosteroid creams: NOT to be used for rosacea but some dermatologists prescribe them regardless, as they will help initially (and quickly) to make the skin less red and inflamed. However they can permanently worsen your rosacea; a big gamble. Make sure to check all ingredients, as inactive (filler) ingredients can irritate our skin just as much as any active ingredient can. 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 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)
"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)
Certain antidepressants - I take mirtazapine (Remeron) - but there are more who have a good record for helping with facial flushing, Zoloft, Effexor 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, in particular weight gain. Therefore I'd only take them for rosacea if your quality of life is really affected by flushing and burning and anxiety.
Also for 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). Read more about the treatment of nerve pain in rosacea (neurogenic rosacea) in this long blog post.
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: 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. My friend E. has very severe rosacea and flushing also, and sees significant improvement (and a cooler and paler face) from her use of Plaquenil. My friend Birdie does so too. Plaquenil is often well tolerated and an older drug with a long safety record. It can really improve rosacea subtype 1 and neurogenic rosacea symptoms through its anti-inflammatory effects.
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. Accutane dries out the skin a bit however and at higher doses has the ability to cause Accutane-induced flushing and redness. My dermatologists advised me against using it for my rosacea since I already flush so much, and he deems it risky therefore.
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. There may also be potential in Veozah (fezolinetant), a non-hormonal hot flash treatment in tablet form. You can read much more about this on the Rosacea Forum, for instance here, here 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. MY friend E. uses gabapentin with success and finds that it helps reduce her severe flushing and burning. 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. Read more about the treatment of nerve pain in rosacea (neurogenic rosacea) in this long blog post. I used Neurontin myself for a little while and wrote about it here. You can also read more on Neurontin for rosacea here, here, here 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 here, here, here, here, here, here and here. INFO about gabapentin 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 here, here and here. You can read more about mexiletine 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 here, here, here, here 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. There may be potential also for upadacitinib (Rinvoq).
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 Complex procedure with not a high success rate at the moment.
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.
This pubmed article also suggests treatment options for vascular and neuropathic rosacea: Conclusions and clinical implications: "Based on the findings linking rosacea to diseases involving dysregulation of the immune, vascular, and nervous systems, several new modalities for treating rosacea have been proposed. The success of neurologically focused drugs including gabapentin, duloxetine, pregabalin, and tricyclic antidepressants in a subset of rosacea patients suggests a neurological component of the disease. [..] The link between rosacea and autoimmune disease has prompted suggestion of probiotics as a potential therapy for both conditions, which may limit overactive innate immune responses to lipopolysaccharide (LPS). Specific targeting of both innate and adaptive immune responses is justified based on the above correlations, although finding the particular drug targets that will impart benefit in rosacea patients remains a challenge." 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).
What worked for me so far?
When I got my flushing issues, it started after the use of hydrocortisone steroid cream, and suddenly I would flare up and burn and look red in the face during college sittings (where it was warm) and coming into a warm room out of the cold. I skipped classes in winter often as I couldn't sit through an hour or two of classes with such a throbbing face.. Flushing, if it keeps happening, is like a varicose vein issue in a way; the blood vessels dilate from flushing events, and the pressure of the extra blood in them pushes onto other blood vessels in the facial network, pushing them over time to become dilated too. The longer this abnormal dilation and constriction goes on, the weaker the blood vessel walls become and the easier they dilate during a new flush attack... So you can end up with a worse flushing problem X years down the line, than originally. That's what happened to me, much worsened by a bad full face IPL treatment. I learnt that my type of rosacea is hard to treat.. Many doctors said; 'just avoid your triggers'. But that can be tedious and means often avoiding a long list of things, from sun exposure to bright fluorescent lights to warm rooms and so on. Food can be a trigger for me too. Alcohol, spices or foods with high histamine load can cause me red, painful and flushed skin all day. So no yogurt and old cheeses or tomatoes for me. Frankly, anything from stress to exertion to any emotion to warm temperatures etc can set the flushing off. It does affect my everyday life and professional life too. It's bad enough that the redness is so visible for others, but the pain and flushed feeling is like a fire that requires a fire hose right away when it kicks off. I use a ventilator very often to stay unflushed. I have been going through this for a long time, but certain medication helps me not flush as bad:
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 here, here and here. You can read more about mexiletine 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 here, here, here, here and 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. There may be potential also for upadacitinib (Rinvoq).
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 Complex procedure with not a high success rate at the moment.
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.
What worked for me so far?
-Clonidine
-Propranolol
-Mirtazapine antidepressant
-Antihistamine Xyzal
Over the years I have tried pretty much every med and every treatment out there for rosacea, and I still haven't got things under complete control. Still have to cool my face most of the time and deal with flushing and burning and redness. But it has become a lot better compared to my worst times, when I flushed literally non stop. It was unbearable. I see a London based professor, Tony Chu, who is really knowledgeable on rosacea and prescribed me this combination of anti flushing meds: clonidine, propranolol and mirtazapine. For mild flushers one or the other by itself can work as well, but I was in a constant flushing state so he threw the full cocktail at me right away to see how I responded to it. It was great, I finally could wake up pale again, could sleep through the night without waking flushed and in need of cold packs. I still use those meds (and have done so since 2006) and still have a much better control over the flushing. I'd say at least 60% improvement for me, overall. I also take a high dose antihistamine (Xyzal) because of mast cell issues. I flush from histamine release, even from someone next to me wearing perfume for instance. Xyzal helps reduce some of that flushing for me. You can read more about this medication and the science behind it in this blog post. I keep cool these days by using a gentle small ventilator when I work or sleep, which often can be just enough to keep the face flushing in check, without causing a tornado of wind and possible rebound.
Clonidine and propranolol lower my blood pressure a bit, and makes the blood vessels in my 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. Mirtazapine also helps reduce my facial flushing and redness. It works more on the central nervous system, calming it down. All are prescription medication. My London professor prescribes the combination clonidine + propranolol + mirtazapine at a low dose for his severe flushing and burning patients, with success. Added pictures of me before I started these medications and after. I have also tried mepacrine and plaquenil, which some rosacea patients have very good results with, but I couldn't handle the side effects of plaquenil (eye issues), nor the dye in mepacrine (red face reaction).. You can read more about these medications for rosacea and my own experience with them in this blog post. I initially also took doxycycline for 3 months straight (200 mg a day) and it made the redness and flushing problem worse.. Plus messed up my bowels and gave me ongoing digestive issues, including wheat intolerance. I also tried minocycline, metronidazole and azithromycin, all made my redness and flushing worse while I took them. I've also tried nerve pain medication Neurontin and Lyrica and amitriptyline, which also all made the flushing worse (but this is not the case for everyone who flushes, there are quite a few good testimonials from flushers + burners out there). So there is where I stand now, I take clonidine (0,1 mg three times a day), propranolol (40 mg three times a day), low dose mirtazapine (22,5 mg a day) and Xyzal (20 mg a day).
There is also a cream out, Mirvaso, designed to treat the redness and flushing of rosacea subtype 1, but I would personally tread with great care there. Mirvaso often destabilizes the blood vessels more, chemically constricting them terribly and then having rebound where the blood vessels dilate spectacularly. Too risky I think. See for my own trial (and rebound) this blog post. In this blog post, you can read an inventory of hundreds of rosacea reviews of Mirvaso. Soolantra is another new product, a cream that kills demodex mites. I tried it but it made my skin burn, unfortunately. I also tried oral ivermectin, which did nothing for me. I have mostly only read user reviews and success stories from people with subtype 2 rosacea and p&p's when it comes to ivermectin. Rarely subtype 1 and very rarely flushing. But it is also an anti-inflammatory cream so it could help a little bit anyway. But I doubt it will stop the flushing problem primarily. I made this blog post about Soolantra and its active ingredient ivermectin.
So what do you when your face heats and flares up? I would try out different treatment options if I were you. Cooling down a flush that makes your skin feel hot and on fire can be done with the use of a ventilator or coldpacks. But you should always be very careful with the cold packs I'd say, as they can cause rebound flushing and make your skin's surface very sensitive. When having a mega flush I use mine only sparingly and properly wrapped up, in addition to the fan. Otherwise just the fan on low, as it is less damaging to the skin.... Medication helps me personally the most. But its quite the jungle out there on forums and websites with advise regarding this. Not every medication helps for every flusher, and what helps some, can make others worse... I would personally see if your GP or general doctor or dermatologist can prescribe one or two of the known anti flushing meds, ideally the ones with the best track record for facial flushing, and always try one thing at a time... to be sure you know how you respond to it exactly. But remember that everyone is different and rosacea flushing is renowned for how hard it can be to treat. Aside from medication, there are also IPL or laser treatments that can help.
Effect of 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 all the photos I post on this blog of myself are taken with a regular, old-fashioned digital camera. Before and after medication use:
I 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 can still feel a bit gutted when I read success stories. Since I still have to manage my skin day in day out. And since I still live a relatively restrictive lifestyle. I just want something to work 100%, 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. And to start lasering all over again, for a quick fix. In 2011 and 2012 I did give it another shot in fact 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 on me, both on a lower part of my cheeks. But he was also a bit doubtful about it all, and unimpressed with the test patch results, which didn't show anything. For now, I decided to just settle for the status quo therefore. 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 during 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 deterioration so quickly, meaning bright red burned up and house ridden. So by now I decided to just stick with my medication and my lifestyle alterations, and focus my time and energy on other things in life again. I'm in my mid-later 30's by now and I just get tired from it all sometimes. I refocused more on my work lately 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 year old desperate forum posts, I see what most 'newbie's' have: fear, panic and a search for a solution, ASAP. No matter what it takes. It's hard to accept things that aren't normal, or right yet.
In the bigger scheme of things, this also did and did nót help 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 out your own skin triggers. 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 certain preservatives). Foods high in histamine trigger my facial burning and redness as well. Gluten make my bowel condition worse and in effect gives me more skin inflammation, including papules (I normally never get them). For me personally, too much dairy consumption 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 cold packs and fans and suffer. Always severely red and burning, my blood vessels seemed to have gone ballistic.
-Traditional Chinese Medicine (didn't help me)
-Acupuncture (Unfortunately this also didn't help me, but acupuncture has reportedly 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 occasional deluded jojoba oil around my eyes, mouth and forehead.
-Red Light Therapy I didn't give this a lot of time to try, truth be told. But being photosensitive, it seemed to always make me more flushed and red right after and for some hours afterwards in fact. Therefore I never continued with red light therapy either.
-IPL I had test patches of all sorts of lasers done over time, which didn't give me clearer results. For my very first IPL treatment 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 types of 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 other patients with mild rosacea symptoms improved from 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 tends to seem better, especially 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 show more pale spots on the test areas in my cheeks. However, once we did a full face treatment with the exact same settings, it made things worse again, and I needed oral anti-inflammatory 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 series was done with the wrong machine and the wrong settings and amount of energy, which 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 use the right settings for your skin type). Unfortunately Dr. Crouch passed away recently, much too young, on September 10th 2016.
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.
-Propranolol
-Mirtazapine antidepressant
-Antihistamine Xyzal
Over the years I have tried pretty much every med and every treatment out there for rosacea, and I still haven't got things under complete control. Still have to cool my face most of the time and deal with flushing and burning and redness. But it has become a lot better compared to my worst times, when I flushed literally non stop. It was unbearable. I see a London based professor, Tony Chu, who is really knowledgeable on rosacea and prescribed me this combination of anti flushing meds: clonidine, propranolol and mirtazapine. For mild flushers one or the other by itself can work as well, but I was in a constant flushing state so he threw the full cocktail at me right away to see how I responded to it. It was great, I finally could wake up pale again, could sleep through the night without waking flushed and in need of cold packs. I still use those meds (and have done so since 2006) and still have a much better control over the flushing. I'd say at least 60% improvement for me, overall. I also take a high dose antihistamine (Xyzal) because of mast cell issues. I flush from histamine release, even from someone next to me wearing perfume for instance. Xyzal helps reduce some of that flushing for me. You can read more about this medication and the science behind it in this blog post. I keep cool these days by using a gentle small ventilator when I work or sleep, which often can be just enough to keep the face flushing in check, without causing a tornado of wind and possible rebound.
Clonidine and propranolol lower my blood pressure a bit, and makes the blood vessels in my 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. Mirtazapine also helps reduce my facial flushing and redness. It works more on the central nervous system, calming it down. All are prescription medication. My London professor prescribes the combination clonidine + propranolol + mirtazapine at a low dose for his severe flushing and burning patients, with success. Added pictures of me before I started these medications and after. I have also tried mepacrine and plaquenil, which some rosacea patients have very good results with, but I couldn't handle the side effects of plaquenil (eye issues), nor the dye in mepacrine (red face reaction).. You can read more about these medications for rosacea and my own experience with them in this blog post. I initially also took doxycycline for 3 months straight (200 mg a day) and it made the redness and flushing problem worse.. Plus messed up my bowels and gave me ongoing digestive issues, including wheat intolerance. I also tried minocycline, metronidazole and azithromycin, all made my redness and flushing worse while I took them. I've also tried nerve pain medication Neurontin and Lyrica and amitriptyline, which also all made the flushing worse (but this is not the case for everyone who flushes, there are quite a few good testimonials from flushers + burners out there). So there is where I stand now, I take clonidine (0,1 mg three times a day), propranolol (40 mg three times a day), low dose mirtazapine (22,5 mg a day) and Xyzal (20 mg a day).
There is also a cream out, Mirvaso, designed to treat the redness and flushing of rosacea subtype 1, but I would personally tread with great care there. Mirvaso often destabilizes the blood vessels more, chemically constricting them terribly and then having rebound where the blood vessels dilate spectacularly. Too risky I think. See for my own trial (and rebound) this blog post. In this blog post, you can read an inventory of hundreds of rosacea reviews of Mirvaso. Soolantra is another new product, a cream that kills demodex mites. I tried it but it made my skin burn, unfortunately. I also tried oral ivermectin, which did nothing for me. I have mostly only read user reviews and success stories from people with subtype 2 rosacea and p&p's when it comes to ivermectin. Rarely subtype 1 and very rarely flushing. But it is also an anti-inflammatory cream so it could help a little bit anyway. But I doubt it will stop the flushing problem primarily. I made this blog post about Soolantra and its active ingredient ivermectin.
So what do you when your face heats and flares up? I would try out different treatment options if I were you. Cooling down a flush that makes your skin feel hot and on fire can be done with the use of a ventilator or coldpacks. But you should always be very careful with the cold packs I'd say, as they can cause rebound flushing and make your skin's surface very sensitive. When having a mega flush I use mine only sparingly and properly wrapped up, in addition to the fan. Otherwise just the fan on low, as it is less damaging to the skin.... Medication helps me personally the most. But its quite the jungle out there on forums and websites with advise regarding this. Not every medication helps for every flusher, and what helps some, can make others worse... I would personally see if your GP or general doctor or dermatologist can prescribe one or two of the known anti flushing meds, ideally the ones with the best track record for facial flushing, and always try one thing at a time... to be sure you know how you respond to it exactly. But remember that everyone is different and rosacea flushing is renowned for how hard it can be to treat. Aside from medication, there are also IPL or laser treatments that can help.
Effect of 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 all the photos I post on this blog of myself are taken with a regular, old-fashioned digital camera. Before and after medication use:
I 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 can still feel a bit gutted when I read success stories. Since I still have to manage my skin day in day out. And since I still live a relatively restrictive lifestyle. I just want something to work 100%, 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. And to start lasering all over again, for a quick fix. In 2011 and 2012 I did give it another shot in fact 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 on me, both on a lower part of my cheeks. But he was also a bit doubtful about it all, and unimpressed with the test patch results, which didn't show anything. For now, I decided to just settle for the status quo therefore. 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 during 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 deterioration so quickly, meaning bright red burned up and house ridden. So by now I decided to just stick with my medication and my lifestyle alterations, and focus my time and energy on other things in life again. I'm in my mid-later 30's by now and I just get tired from it all sometimes. I refocused more on my work lately 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 year old desperate forum posts, I see what most 'newbie's' have: fear, panic and a search for a solution, ASAP. No matter what it takes. It's hard to accept things that aren't normal, or right yet.
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 out your own skin triggers. 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 certain preservatives). Foods high in histamine trigger my facial burning and redness as well. Gluten make my bowel condition worse and in effect gives me more skin inflammation, including papules (I normally never get them). For me personally, too much dairy consumption 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 cold packs and fans and suffer. Always severely red and burning, my blood vessels seemed to have gone ballistic.
-Traditional Chinese Medicine (didn't help me)
-Acupuncture (Unfortunately this also didn't help me, but acupuncture has reportedly 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 occasional deluded jojoba oil around my eyes, mouth and forehead.
-Red Light Therapy I didn't give this a lot of time to try, truth be told. But being photosensitive, it seemed to always make me more flushed and red right after and for some hours afterwards in fact. Therefore I never continued with red light therapy either.
-IPL I had test patches of all sorts of lasers done over time, which didn't give me clearer results. For my very first IPL treatment 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 types of 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 other patients with mild rosacea symptoms improved from 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 tends to seem better, especially 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 show more pale spots on the test areas in my cheeks. However, once we did a full face treatment with the exact same settings, it made things worse again, and I needed oral anti-inflammatory 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 series was done with the wrong machine and the wrong settings and amount of energy, which 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 use the right settings for your skin type). 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 the first IPL treatment with Patterson. I never used a fan. Ever since that treatment 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. With lifestyle adaptations I have adjusted a bit since. 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.
Pictures of rosacea patients
When my skin burns and flares and feels on fire, the most natural urge is to open all the windows and let in cold air. Or to put my head in a bucket of cold water. Or to sit right in front of a powerful air conditioning machine. The colder the better! But according to the Warm Room Theory, this is actually not the best thing to do when you have rosacea. Making your rosacea skin very cold, might cause rebound worsening in the long run. It is normal for anyone with rosacea to get a rush of warmth up the cheeks when entering a warm room. Every person that gets too hot, can rely on their body to deal with the overheating, usually by stimulating the body to sweat (a way to release excess heat from the body) but also by widening the blood vessels in the skin. The wider the vessels are, the more warm blood will be closely exposed to the skin and be able to lose some of its heat that way. When the body signals the blood vessels in our skin that the body is overheating, then the body activates nerves in the skin to dilate the blood vessels in the skin (vasodilation). The way in which the nerves do this, is by releasing certain chemicals, that message to the blood vessels to widen. And to make the effect even stronger; the more blood flows through the blood vessels, the more these blood vessels themselves release chemicals to keep this vasodilation going. This is a normal process; everyone alive experiences this, or else we humans wouldn't be able to regulate our temperature or fight off infections or have proper wound healing, for instance. The problem occurs when our skin has too many of these flushing events. When it becomes very frequent that the skin flares red and hot. This is the moment that the blood vessels are dilated for a longer period over time, and that the vessels give off a signal that make the body create new (and thus more!) blood vessels in the skin (angiogenesis). The bodies way to create more infrastructure for this extra blood flow. This principle is also normal, but in people with healthy skin it is a limited occurrence. For people with rosacea, it is however the mechanism in which our rosacea progresses, slowly over many years, from mild to moderate, to severe. Because when you have more blood vessels and more nerves in your skin, you will have more dilation of blood vessels and more facial flushing, especially when you are in a warm room and your body goes through its normal steps and paces to cool off the body.
ROSACEA INFRASTRUCTURE
So a person with rosacea will have more blood vessels and nerves in the skin than a person with healthy skin, and they have been made by the body to release heat. They will give a rosacea face often the distinctive red(der) cheeks and sometimes also nose and chin or forehead. The human face and head are special, in that they have more and different blood vessels and nerves than any other area of skin on the body. They have special nerves to dilate blood vessels and special blood vessels to release the heat carried in the blood. The nerves involved in these areas are sympathetic nerves. They can act to dilate special blood vessels (arteriovenous anastomoses), which open up and shunt blood into the blood vessels of your skin, creating the phenomenon we know as the flush. This also explains why many people have intense flushing confined to certain regions of the face. many people with rosacea flush on their cheeks, some (but far less) also flush in their neck and chest and it is very rare to find rosacea patients who flush on the rest of their body, unless they have other skin conditions that cause skin problems elsewhere. Rosacea, however, is mostly limited to the more densely vascularized face, where our skin is also thinnest, compared to other body parts. Showing the redness in our dilated blood vessels even more!
More on these nerves in the skin that are involved in skin flushing
Another important type of nerve involved in rosacea is the sensory nerve. Unlike sympathetic nerves that are triggered centrally in the brain, sensory nerves are locally handling the blood vessel dilation in the skin. When your face is exposed to sun for instance, or to a skin care product that has irritating ingredients, then it are the sensory nerves that can act immediately and signal to the blood vessels in the skin to dilate and give off a warning signal to us. They play a role in rosacea flushing, as such. When our blood vessels in the skin dilate, after being signaled to do so by the sensory nerves, they not only become wider and let more blood through, but they also create local inflammation, which in turn makes our nerves in the skin give off a burning pain feeling. For most people with rosacea, a deep flush is therefore painful, feeling hot, sore and like a burn almost. Due to rosacea, more nerves are created along with the new blood vessel infrastructure, but the existing nerves can also become hypersensitive. This can explain why early on, with mild rosacea, facial flushing can be fairly painless, but later on the flushing can create moderate to severe pain and hot burning sensations; the nerves in the skin have become super reactive and sensitive from the long history of being triggered by flushing attacks of the skin. As a result, some people with rosacea have such a sensitive and extensive nerve and blood vessel infrastructure, that even a small increase in blood flow will result in significant flushing episodes.
Chemicals involved in facial flushing
There are hundreds of known chemicals involved with nerves and blood vessels. But there are very specific chemicals released by our nerves and blood vessels, when we have rosacea and suffer from facial flushing, such as neurotransmitters, neuropeptides and growth factors. Neurotransmitters are chemicals that transmit a nerve signal to other nerves as well as other tissues, such as blood vessels. Neuropeptides do the same, but are stronger and act longer. Both can signal blood vessels to dilate or constrict, and nerves to feel pain or to go numb again. There is something special going on with these neuropeptides, research showed. More on this soon. Growth factors, released by skin cells, help to maintain existing blood vessels and nerve structures, and also make it possible for both to grow. They also play a role in the process of our nerves becoming more sensitive and easily triggered to feel burning and pain. When the nerves in our skin are activated (for instance during a flush), this in turn stimulates more growth factor release, like a waterfall-construction. They are all in place to help the body deal with overheating, but with rosacea patients this system of blood vessels and nerves and chemicals are going in overdrive, causing our increasing facial flushing and red faces.
In most people facial blushing takes a minute or two for the blush to disappear. However, flushing is a different beast and can last much longer, and it usually is more severe than blushing too: more redness, deeper blood vessel dilation, hotter flushes and longer lasting. In some people severe and frequent blushing can become a real hindrance and affect both personal and professional life. Although the vascular –flushing- aspect is one of the most difficult aspects of rosacea to treat, there are several medications available that have proven to help treat facial flushing for a number of patients.
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 beverages
*Skin care products that contain irritants. (Blog post on this). 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 Soolantra isn't designed for these symptoms, although it does seem to help sometimes!
Protect yourself from the sun with sunscreen, hats or if needed a sunbrella
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 beverages
*Skin care products that contain irritants. (Blog post on this). 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.
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! :)
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 Soolantra isn't designed for these symptoms, although it does seem to help sometimes!
Protect yourself from the sun with sunscreen, hats or if needed a sunbrella
And try to stay positive. Inform yourself as much as possible about rosacea, 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.
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 acknowledged 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 independent 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 co-sharing 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 health 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.
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 rosacea. Other 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.
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.
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 acknowledged 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 independent 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 co-sharing 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 health 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.
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 rosacea. Other 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.
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 Rosacea Support Facebook group
A members only Rosacea Healing from the Inside Out group
A members only Rosacea Rescue
The Rosacea Forum
Rosacea Support Community
The Rosacea Research and Development Institute
A members only Rosacea in English Facebook group
A members only Rosacea Support Facebook group
A members only Rosacea Healing from the Inside Out group
A members only Rosacea Rescue
Thanks for your post Scarlet and I hope you are doing well in 2020,
ReplyDeleteI think many of us with rosacea share a similar if not wholly consistent view of the trials that rosacea subjects us all too. It is ironic in a way that the very thing evolved to protect us from the harms of the world can cause so much harm to the mind and heart.
In saying that, I am very glad you are finding some contentedness in life :). If nothing else, rosacea can make a person mighty resilient, and that is no small thing. And our lives are so heavily influenced by what perspectives we hold on what Is right, wrong, good and bad that although we may have reached the point as you have - that there may not be much improvement of the skin - there is a way to become more at peace, content and ultimately unburdened by a life with rosacea. There is a lot of beauty in the world and fortunately these things remain lovely regardless of if our skin is a tad red or not.
Joshua
Thank you Joshua, thanks for your kind words. It's true, it is baffling and stressful to first find out that our skin is not protecting us as it should, and causes so much worries and pampering in a way. Luckily there are ways to try to treat it (no cure though, in that respect we're probably born in the wrong era still). But there is indeed a place for calm contentment at the end of the line, when you tried all you could try to improve your skin, and hopefully find a status quo where you know how to keep your skin stable enough that there is space again for the pleasures of normal life. Even if that means the need of avoiding the sun or the heat, or certain foods. Hopefully it teaches people to have trust in themselves and by now a flare up no longer stresses me out as much, knowing things will usually calm down again also. And you are right, perspective makes out a huge part of how we experience things, life. It sometimes takes time to adjust to things you initially refuse to accept. Now my skin's behaviour and need for cooling and protecting it has become the new normal. Still hoping for some breakthrough treatment protocol though! :)
ReplyDeleteThanks and best wishes