22 August, 2012

Do I have rosacea? What to look for. + Summary from the last years I

Do I have rosacea? What to look for

Rosacea does come in different shapes and sizes and with different symptoms sometimes, but there are some basic characteristics that might help you to figure out if it could be rosacea you are having. The problem is that they are symptoms that a majority of people with rosacea have, but as I said, not everyone :) But as a rule of thumb, there is a subtype 1 where the skin of the face - especially the cheeks - can go red, get flushed, feel warm/hot, and subtype 2 where the skin can also go red but more with a constant background redness, and acne-like outbreaks on top. For many people with rosacea, being in the sun can be a trigger and make the redness and potential burning worse. A lot of people also notice that drinking (sufficient) alcohol can make their face more red. Spices and emotional stress can do the same. I think that what makes rosacea typical, is that it can make someones skin go red in a matter of seconds or minutes, when triggered. This mostly goes for subtype 1, and is almost like a heavy blushing attack. But the difference between rosacea and blushing is that over time the 'blush' from rosacea takes quite a long time to subside. And these flushes become more frequent. And with time, many people also find that the redness of the skin starts to hurt, or feel hot. Sometimes the face even becomes a bit puffy. As I said, these are no strict criteria and rules, but maybe they can help you in the right direction. A dermatologist should be able to properly diagnose you ideally, because there are more skin conditions that can look like rosacea, including dermatitis, seborrheic dermatitis, acne or the skin redness might be linked to an allergy, or a systematic illness like lupus even. It's up to a dermatologist to make the right diagnosis.




Some more general info on rosacea:

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


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

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




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

All rosacea cases might look alike, but I think they are often very different. Just the difference between subtype 1 and 2 is already profound. Rosacea seems an umbrella term for skin conditions that all deal with redness and inflammation, but which are otherwise quite diverse. Flushing and burning requires different treatment usually than permanent 'solid' skin redness and bumps and outbreaks. Antibiotic creams and pills often work for subtype 2, and if not there are also Soolantra cream, low dose doxycycline (oracea), topicals like tea tree oil and low dose roaccutane even to help out, but none of these are typically a solution for subtype 1 rosacea, with red hot skin and flushing that comes and goes. Subtype 1 is often much more about blood vessel disorder, or underlying firing up conditions like allergies or auto immune diseases or hormonal or central nervous system things, that make the blood vessels widen even more. Often people with subtype 1 also have thin and sensitive skin that doesn't protect anymore. There is a lot less known about this one, and demodex mites and bacteria are less often playing a role in subtype 1 than in subtype 2. And when people have underlying auto immune diseases, then these can be like a fire under the rosacea. Many people with rosacea seem to actually have a digestive disorder of some sorts, or auto immune diseases, may it be thyroid disease, IBD, asthma, arthritis, erythromelalgia, lupus, allergies or another one. There have been people with full out rosacea skin, who turned out to have a mast cell disorder and a histamine intolerance, or a food allergy all along. Then fixing that problem or cutting out allergens can be enough for the skin to recover. So it is complex.. That's why you need a good doctor or dermatologist to help put the puzzle pieces together and do additional testing. Typically dermatologists want to rule out lupus and carcinoma cancers, which can give a rosacea like skin appearance. But then there are other skin conditions that might look like rosacea, including regular acne, eczema, dermatitis and seborrheic dermatitis. 

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

Some people asked me if I think that subtype 1 rosacea automatically turns into subtype 2, if you let it roam free long enough. I don't think so. Or it didn't happen to me at least. It does seem to happen to some others, if I am to believe the literature on rosacea. But for me, I have had type 1 for 18 years now and I have never developed into stage 2. Sometimes a long period of facial flushing makes my skin break out a bit in small red bumps, but they are the result for me of face swelling and inflammation, not of a bacterial issue with the skin. They go away soon enough again for me , and when I can control my flushing for longer periods at a time, I don't seem to get the break outs either. 
However, I can trigger them by using skin care products that my skin reacts to..
With subtype 1 rosacea, with coming and going redness and flushing and burning, you need to focus I think on getting the flushing under control I think. The longer you can stop the flushing and the longer you can bring the redness back to a more normal skin colour, the more chance the skin and blood vessels have to calm down. I flushed for a year straight in 2005, no exaggeration, and I was convinced that it was the death stabbing for my skin. that I would never be pale again, that my blood vessels would have spread and spread into this vast red network, never to be normalized again. But only a week into my new anti flushing regime, and my skin could look pale and normal again for periods on end.. I don't have big visible veins I must stress, no telangiectasia. 

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



What can doctors prescribe to treat rosacea? 

I haven't found a very good list of creams online yet, although there are many posts on good rosacea skin care products. Medication wise, I think the following products are important to know about. Please check my most specialist post on rosacea medical treatments here:

-Oral antibiotics, mainly tetracyclines: used for rosacea subtype 2, with skin outbreaks and pimples and redness
-Antibiotic creams; metronidazole cream, rosex cream: used for rosacea subtype 2, with skin outbreaks and pimples and redness
-Finacea gel/cream: used for rosacea subtype 2, with skin outbreaks and pimples and redness
-Soolantra/Ivermectin cream: used for rosacea subtype 2, with skin outbreaks and pimples and redness
-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.
-Corticosteroid creams: NOT to be used for rosacea, but some dermatologists prescribe them regardless, as they will help initially to make the skin less red and inflamed. However they can permanently worsen your rosacea and will do so temporarily for (almost) sure; a big gamble.
-Anti flushing medication: clonidine/moxonidine/beta blockers/certain antidepressants/antihistamines
-Anti inflammatory medication; mainly for rosacea sybtype 1 with flushing and redness of the skin: plaquenil/mepacrine and NSAID medication including ibuprofen and diclofenac.
-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.

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

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




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

*Rosacea usually develops in your 20's or 30's, or even during menopause for women (although teenagers and even kids can have rosacea! Mine started at age 19).
*The rosacea redness usually worsens with time 
*The redness can be seen on the cheeks but also the chin and nose (and even forehead and ears for some)
*People with rosacea often have a pale complexion and a tendency to blush 
*In the earlier stages the skin can become red, yet it also can look pale again once a flare is over. Flushing flares can last short or longer. Only with time the redness usually can become more permanent.
*Generally there is a worsening of symptoms after sun exposure, drinking alcohol or eating certain foods. 
*Skin becomes often dry and flaky
*Skin often starts to feel hot or painful (burning) over time
*The flushing isn't accompanied by sweating
*Papulas may appear on the face
*The face can become a bit swollen from the redness, called edema
*When a flush is triggered, it can take a long time to disappear again, typically longer than a few minutes.   

* In a very recent survey, conducted by the NRS nearly 93 percent of 1,709 rosacea patients said they had experienced physical discomfort as a result of the disorder, with burning and stinging the most commonly cited pain sensations. Among the other physical discomforts experienced by the survey participants were tightness, cited by 45 percent; swelling, named by 44 percent; tenderness, mentioned by 41 percent; tingling, 32 percent; prickling, 25 percent; and headache, 19 percent.





Pictures of rosacea patients











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

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



Differential diagnosis of flushing
Common 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
    Pancreati 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







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

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

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






Try to identify what triggered your flair up

And try to avoid it, if possible. Some common triggers for a rosacea flair, with hot burning skin, are:

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

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







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

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





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

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

Again, this is personal and some people notice no change whatsoever in their skin when on a diet. But if you feel your face is flaring and burning and awful lot of times, it is worth doing an elimination diet... What my doctor recommended at the time, is to start with a couple of 'safe foods'. He said; white rice, chicken and salad. Of course, one of those three could be in theory your food trigger, but at least it will give you a short time to figure that out, with only 3 food groups. Then, if all goes as the doctor planned, you will be able to add one new food item to your diet every day.
Now, the problem is of course that not everybody has an instant skin reaction to a trigger food. Some even say that it takes several days for their skin to react. You can take it slowly of course with new food introductions. But most people might simply not have the time for this slow paced food experiment. You can always take a look at your normal diet and try to cut out the worst offenders of the food world (in terms of rosacea); alcohol, spices, old cheeses and other high histamine food (yogurt is also one of them), gluten, dairy, processed (fast)food and high sugar content. Basically; most of the good stuff. It can make an immense difference to some people with rosacea however. There are many stories of big skin improvements, once people started to eat more 'clean'.

I have a feeling that people with subtype 2, papulas, tend to maybe see a bit less of an effect than those with general (non fixed) redness and flushing. Subtype 2 sometimes responds very well to treatments aimed at eliminating demodex mites. ZZ cream used to say it helped but now there is a much more straight forward and reliable cream on the market, called Soolantra. I'm working on a blog post on this. When your skin reacts well to Soolantra and it clears it, then you might really have no need to cut out all sorts of foods in your diet. But ypically, the facial flushing and burning is more difficult to treat and Solantra isn't designed for these symptoms, although it does seem to help sometimes!







If your flushing problem becomes chronic or disruptive of your every day life, consider medical treatment to control the flushing: 

*Anti flushing medication:

-clonidine
-beta blockers like propranolol or atenolol
-Antihistamine medication like Xyzal, Zyrtec or any other brand. Xyzal is relatively new and comes with less side effects (like drowsiness and tiredness) than an old brand like Benadryl.
-certain antidepressants work on the central nervous system and reduce facial flushing. Remeron is one of them, but several others have been mentioned positively on rosacea forums, including Celexa and Zoloft. I wrote here about the medication that helps me with my rosacea symptoms.



*Medication to reduce inflammation:

-Antibiotics. Only low dose doxycycline (Oracea / Efracea) will help control inflammation without giving additional risks for antibiotics resistance. It should be the first antibiotic to try, as you can take it long term without the type of side effects that higher dosed antibiotics from the tetracycline family, metronidazole/azythromicine/lymecycline give. Not just resistance problems, increasing the risk of you becoming immune to some antibiotics, but also the risks of bowel conditions and disruption of your natural gut flora. Low dose doxycycline is too low to affect your good gut bacteria, but is strong enough to help your skin fight inflammation.

-Low dose antimalarial medication. Both plaquenil and mepacrine have proven efficient for some cases of rosacea. They need to be taken long term and build up to high enough levels in the blood over a period of at least 5 weeks. They reduce inflammation in the skin. I wrote before about them.

-Some people find relief with low dose roaccutane. This is a vitamine A derivative. It's mainly used for acne and subtype 2 rosacea, with blemishes and papulas, but there have been some success stories for people with only general skin redness and burning and flaring. This drug comes with some more serious potential side effects, although at low dose, the chances of these happening really reduce.

-Other anti-inflammatory medication
Medication from the NSAID group for instance.



PLEASE always discuss with your medical specialist what drugs and supplements you take together. 
A friend of mine passed away due to 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). 



-There are natural herbs and supplements that can help control some of the flaring. It's trial and error, one supplement might work for one person, and cause a flare for another. It's best to take the time to try one thing at a time, so you know exactly if something is working or not. I wrote a blog post about natural anti inflammatories.

*Red Light therapy has helped many people control their facial flushing, burning and redness. I am up for a new trial with it soon and will report once I do.

*Lasers or IPL isn't for everybody, but it has the potential to truly reverse your rosacea and facial flushing. Some people have amazing results, some others are unlucky and see no improvement and some are extremely unlucky and got worse from them If you do the research, find a knowledgeable, experienced and approachable laser specialist, and make sure to do some test patching, you increase your success chances significantly.

*Topical creams can help mostly with the papular, acne-like (but not the same as acne!) rash, but  subtype 1 patients, however :)
some creams have shown potential to control facial redness (erythema) and inflammation. Some of these creams are Soolantra (blog post on this cream will be up soon), Finacea or metronidazole cream. There are more out there, but results vary. And they don't always help with rosacea subtype 1, where the main symptoms are redness of the skin, flushing and burning. For those who can tolerate these creams, they have been helping some

-Some people find relief with low dose roaccutaneThis is a vitamine A derivative. It's mainly used for acne and subtype 2 rosacea, with blemishes and papulas, but there have been some success stories for people with only general skin redness and burning and flaring. This drug comes with some more serious potential side effects, although at low dose, the chances of these happening really reduce. Taking too high a dose can actually create or worsen existing flushing problems, so the dose is really important here.

-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.






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








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


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

Someone wrote this the other week on The Rosacea Forum, and I very much agree:

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


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



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

The Rosacea Forum

Rosacea Support Community

The Rosacea Research and Development Institute

A members only Rosacea in English facebook group

A members only Make-up for Rosacea facebook group

A members only Rosacea Healing from the Inside Out facebook group






And last, in summary, this is what helped me so far 

after struggling with rosacea since my early student days in 1999:


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

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

-Traditional Chinese Medicine  (didn't help me)

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

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

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

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

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

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

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

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

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

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


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






I also tried a number of other medications, which I stopped again because they didn't help my rosacea or because they stirred my flushing further up. They help many other people with rosacea, however. This is just a personal list of what didn't help me.

I tried:
-amitriptyline
-neurontin
-Lyrica
-doxycycline
-minocycline
-azythromicin
-cetirizine
-mepacrine
-plaquenil
-mastocytosis medication; bilastine, pantoprazole and zaditine.

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



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















So, in summary:

Rosacea is said to typically start in people's late twenties, thirties, forties or even onwards. 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. However, the sudden onset can be a clue for rosaceaOther patients had a long standing tendency to blush or get red as a youngster and found that this developed into rosacea with age. A good portion of rosacea patients also seem able to trace the rosacea back in their family history, and know parents or grand parents who had rosacea symptoms. However, this definitely isn't the case for everyone. (Nobody in both my families have rosacea, only eczema issues). The use of Accutane/Roaccutane or (Hydro)cortisone cream can also have been the trigger for rosacea to erupt. When people develop red, burning and flushed skin or bad skin rashes after use of any of these creams, steroid induced rosacea should be the first suspect.
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 ├índ small red paps and pimple like eruptions, generally without white heads. Some people mainly get the one, others the other (subtype 1 and 2) but most people with rosacea experience both symptoms at some point, more or less severe. For instance, I have subtype 1, with erythema, burning, redness and flushing and very little outbreaks, but when I flush badly or eat something wrong, I also get red dots that look like little red pimples without a real white head (but often with some fluid or very fluid thin puss inside).

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






Coexisting health problems which people with rosacea often mention

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


My personal experience with coexisting health conditions

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

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








Summary from old blog updates from the last years


17 May 2006

Last week I lightened my hair in an 'adventurous' mood and although I tried my best to not get any of the bleaching stuff on my scalp, I do notice a definite worsening of my rosacea ever since. Lots of p&p’s all of the sudden for a week and more redness, burning and flushing. It actually seems to increase after time, weird enough. I’m just not sure if it is directly related to each other, but the last months it all went so well again, I can now tear my (blonde) hairs out. I just came back from a week in New York with my family and I was doing not too bad there. Yes, there was redness but it wasn't too bad and manageable with a fan and cold packs. I even survived the long haul flight and felt in control of the normal uncontrolled flushing and burning and redness attacks. The worst of the IPL treatment I had a month (+) before had subsided and I felt the diclofenac was helping a bit. It was a brilliant week, we stayed around Broadway and I saw Manhattan, Central Parc, Soho, China town, Little Italy, the Empire State Building, Brooklyn, Harlem we saw a musical, did a boat-dinner trip over the Hudson River, lots of walking and sightseeing, the Twin Tower memorial spot. I missed all of the museums, as my sister had another type of check list, but it was a lot of fun and I was glad we were outside instead of inside buildings. Flight back went well too, and then I had the exulting idea to lighten my hair. Especially for my mums wedding. That didn't turn out well.. My boyfriend was far from impressed with the hair color and I just have the feeling things are getting worse the last couple of      days skin wise, much more now then the first days after dying the hair. Will have to give it a few more days and hope things will calm down again and otherwise try to see my dermatologist soon. Feeling sad, although the hair color is not too bad actually. Right now my whole face stings, burns and is red again, but I'm not even sure it has anything to do with the hair dye, or with something else..

Seen my dermatologist yesterday and he thinks my rosacea has just become very active. Not sure if it from the irritation from the hair dye or something else. "For all we know it might be related to the floods in Suriname", he joked. But fact is that I am not only bright red, but also covered in red papulas, which I never had, and that I am burning and flushed. Again! It might be the fumes from the hair dye, who knows? The doc. didn't know what else to do, except perhaps low dose accutane in the near future.. And my face is getting worse with the hour. I just hate this condition so much and don't know how to cope with this setback again :( You think you can do a thing that millions of women (well, a LOT at least) do on a regular basis, something I did many times before I got rosacea, and then BOOM, I am faced again with the limitless limitations this wretched condition brings. I look terrible again, all puffy and bright red and swollen, and worst of all: I did it for my mums wedding (hence the trip to New York, as a wedding thing for her and his children) and now I'll be a big red tomato all evening probably. I'm not positive at all! I'm like a big sore red tomato right now and the stress of things deteriorating daily and a dermatologist who doesn't know makes me feel a bit desperate. Wished I never took any chance at all and left my hair for what it was. Stupid vanity!! Sorry for venting. I'll add some pictures of the Big Night to show the state of my sorry skin :(                                                               


Late May 2006

The wedding was nice, but I was seriously flushed as predicted. I had been cooling most of the daytime and brought my little fan over, just in case. But the hustle and bustle and the fuss there did make me flare up again. I had to pose for pictures and was feeling very self conscious. I just let the flush run it's course at some point, as it was so bad and such a flood of heat and hotness that I didn't think a cold pack or fan would help anymore. Sometimes I find that a flush 'dies out' by itself after a few hours. I managed to dance with my sister and at the end of the evening, having already skipped on the yummie foods to save my face, I thought 'what the h***' and grabbed some strawberry pies and other nice foodies and just ignored the painful face as well as I could. Managed to keep my smile up and only break a bit down in the car. 
Later that month I had another session with Dr. Crouch. After 4 different test patches, done with the Lumenis One with him, things seemed safe. They all gave a certain degree of paleness (lightening I should say, sometimes only visible after long and painstaking glancing) and little side-effects, apart from some extra flushiness for the first 3 weeks. The last test patch was made over 2/3 of my left cheek and we felt confident enough to start with a full face treatment by now. It was a bit painful, but not too much and after the Dr Patterson ordeal I was very tensed. After the treatment I was very red for an hour and then my face seemed to settle and became more pale again. The first 5 days were not too bad. I had some extra flushing and redness, but within the expectation range. Started to get positive and I checked for improvement daily and tried to stay cool calm and collected and busy with other things the rest of the day. However, on day 6 something seemed to click and I experienced severe redness and flushing and burning for days and night on end. Dr. Crouch considered this reaction as severe and wasn’t used to such a strong reaction to the IPL, so late. After the symptoms worsened he advised me start a short course of oral prednison. To calm the inflammation down. The dermatologist I saw at home in hospital felt better about a milder NSAID to start with and prescribed me diclofenac 50 mg, three times a day for a week. I’m now almost 3 weeks post treatment and the redness and flushing finally seem to calm a bit down. Not sure yet what the advantages of the IPL have been. According to both Dr. Crouch and the local dermatologist my reaction might indicate photo sensitivity, meaning that IPL and other light devices are not a first choice in the future. Laser, and particularly the Nd:Yag might still be an option though. To be continued.. 

A week later: The course of diclofenac really seems to have calmed things down and I'm happy to say that after one week of diclofenac my skin has calmed down considerably. I am even thinking about asking for a longer course, to see what benefit it will have long term. Maybe this drug is helpful for others, especially to calm down post IPL flares etc. It definitely hasn't had any bad effect on my (extremely sensitive) skin and extreme flushings. It also worked as a Painkiller Charm.
Really red and sore by now


August 2006

Update: lately things are not as good as they used to be. I'm not sure if it comes from the IPL I had and the bad reaction afterwards, but I tend to flush much more and easier again and have a harder time again with my rosacea. A lot of bad days in one week, or month. I try to watch my diet closely and eat healthy. Lately I notice that being outside when the sun shines makes me flush terribly. Even walking in the shade. I bought a heat from Coolibar, as well as a special scarf that protects my face from the sun. Unfortunately I look pretty ridiculous, all wrapped up and I get loads of strange remarks out on the street. I try to ignore them and listen to my digital music instead, but things are definitely on a downer again lately. I still take the same medication. That worked well initially so I stick to it and think this is all triggered by the hair dye debacle and the severe response to IPL. The small area's look still good, Dr. Crouch things I am a very rare case according to him, who responds bad to big area's that are treated at the same time. We are still positive about future treatments, but only smaller area's at one time now. Time and money consuming unfortunately, but health comes first. 
Later in august: I think the worst is behind me, things are calming down again.

Really red and sore by now

October 2006
I’m having problems with my right cheek ever since I fell asleep on an ice pack :S So silly... I can hit myself for it over and over again, but there's no real point. I felt a flush when I woke up in the middle of the night and took a cold pack from the freezer and wrapped it up in a cloth and wanted to have it on my cheek for only a little while, 5 minutes max, but because of the remeron, I fell straight asleep again (it really knocks you out half an hour after you took it, a real sleeping med actually as well). That happened while staying with friends in Ireland. Next day I instantly felt it was bad news, that affected cheek was stiff and burning and glowing and had some weird nerve pain. It has been one month now and the burning is pulsing, throbbing and almost constant. Nicely accompanied by redness. I will ask my dermatologist next week for a painkiller, but when I read about Lyrica, one of the side-effects mentioned is facial flushing! I know it is only rare, but still…we are so much more prone to such side-effects, with our bad blood vessels..

Update: just saw my dermatologist and convinced him to let me try neurontin, but My God what a hard work it was to convince him. Got myself sort of into a difficult situation now. My GP is a very nice woman, and open for almost all my requests. I always bring some medical proof to support my requests. I've seen her a lot the last month, due to this nasty cheek, and she just prescribed me an antihistamine I wanted to try; hydroxyzine. Now the assistant would discuss with her today about neurontin. In the meanwhile my dermatologist called, he's just back from holiday. I explained my problems and asked for a 2 week trial of neurontin. He agreed, thought it was a good way of trying to figure out if it is a neuropathic problem or not. Then the GP's assistant called me back, saying the GP DOESN'T want to prescribe me the neurontin, because it is for epilepsy she thinks, and she totally disagrees. That is very unusual for her.. to explicitly say no. I feel that she must have grown tired of my constant demands for this and that, and I'm like a walking medicine cabinet, lol. SO, now I do have a prescription for the drug for two weeks and the green light from the dermatologist, which is most important of course, but I don't want to piss my GP off, since she is a very nice woman and has been invaluable for me over the past years. I don't want her to get really annoyed once she reads in her memo's (they all share it in one electronic database thing) that I DO take that neurontin now. What's best? I was thinking to just try it out, discuss it with the derm. in 2 weeks time, once (if) I can continue with it, let him write her a letter or give her a call and explain it to her. Unconventional medicine it seems, but it just might help me, you know? SIGH! Rolling Eyes Why is it all so difficult sometimes. The derm says it is quite hard to damage nerves, especially when the skin itself isn't really burned or damaged. Which isn't the case with me. But the cheek is still clearly red and marked where the cold pack was and I feel it constantly throbbing and it feels like I had acid smacked on it :( To be continued..
*Ok, I take 300 mg. at night now, second night last night, and when I woke up I was pale. I mean PALE, as a ghost. It has been a long time back since I looked like this. Now, after I ate something and started being busy I am back to my pink cheeks and the burning is still there, but not as sharp. Also I don't feel so spaced out as Wednesday. Have a bit more headaches, but that should pass I reckon. I will continue this drug for at least one or two weeks and then see and evaluate. I will also buy a blood pressure measurer today. Can buy one very cheap, and check it daily. 

Update. I have to say first that I don't take too much of this medicine: usually people take up to 1200 or 1600 mg a day as an average, and my doc prescribed me 900, of which I take 600 mg daily now. One tablet in the early evening and one before sleeping. The first side-effect (dizziness, bad coordination etc) have passed luckily, pretty quickly too. I do have to say that I have a bad cold, full nose etc. Together with a long list of side-effects, this is mentioned as happening 'often', in my meds enclosure leaflet. But nothing too bad. I have a blood pressure measuring thing, because another side-effect that happens often is supposed to be hypertension, and I take already another host of pills to lower that... So far my blood pressure if fairly low, the way I want it (I have check ups with my GP and dermatologist every now and then and they agree this is still ok for me): I'm around 98 over 60, still while on this medicine and the diclofenac, which raises blood pressure as well. And the bonus question: Does it still work for my burning and flushing? I think it does. I have had a bad day, but that was due to going to the football (soccer), getting all over excited when my team came back from a 3-1 score in the last 15 (I say 15!!) minutes to 3-4 in the last seconds, so that made me jump on my seat a lot. I also sinned on some chips (BAAAAD for me) and having hot weather here isn't helping either. But I still am more pale then usual I would say and the pain has definitely become less sharp. See how I'll be at the end of the week.(And my team won, yeaahhhh).




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