19 August, 2012

What happened in the last 13 years, sigh..

Skin calm in the morning
I have been dealing and not dealing with rosacea for the last 13 years, after it hit me at the age of 19 and it is still, so many years down the line, affecting my life. At the time it seemed that the red, burning, flushed cheeks hit me out of the blue. I had just finished my A-levels and had started with law studies at uni, something I had been looking forward to for a very long time. I’ve always had pale and normal, very clear skin and had not even dealt with one outbreak of acne during puberty. Lucky me! I could blush from alcohol though and never liked high temperatures. I don't even remember skin issues at the time, but my cheeks would get pink from nights out with alcohol involved. Never to a troublesome level though. I felt by the end of teenage years, I was entering the safe zone skin wise and had just been just lucky with peaches and cream skin. Well, I was wrong. In hindsight I rather had dealt with some years of acne compared to the rosacea that was about to engulf me.



First; what is rosacea?

Rosacea is skin condition that affects many adults. It is characterized by flushing of the skin that looks like blushing, but doesn’t go away. According to the American Academy of Dermatology (AAD), “Rosacea often begins with a tendency to blush or flush more easily than other people. The redness can slowly spread beyond the nose and cheeks to the forehead and chin.” The redness and flushing associated with rosacea can be uncomfortable, both physically and emotionally. Some people with rosacea get red papulas and pimples like eruptions on the face. A recent article called “Unlocking the Mysteries of Rosacea” by Jan Bowers from “Dermatology World” stated that, “According to results of a recent NRS survey of 801 rosacea patients, a strong majority of patients in all subtypes said the disease had inhibited their social lives.” The article went on to add that, “respondents also cited receiving negative comments or stares and cancelling social events because of self-consciousness regarding their appearance.” Clearly, these symptoms are having a negative impact that is seriously affecting the lives of rosacea sufferers.

There are a great variety of triggers that can exacerbate a rosacea type skin, such as extreme weather (both hot and cold), spicy foods, alcohol and stress. The Journal of Dermatology outlined some common rosacea triggers based on a recent study in their article titled, “Standard Management Options for Rosacea, Part 1:  Overview and Broad Spectrum of Care”. The triggers are as follows in order of those having most effect to those having least effect:  “Sun exposure, emotional stress, hot weather, wind, heavy exercise, alcohol consumption, hot baths, cold weather, spicy foods, humidity, indoor heat, certain skin care products, heated drinks, certain cosmetics, certain fruits, marinated meats, certain vegetables and dairy products.” Avoiding and/or reducing the triggers can aid in the reduction of rosacea symptoms, but the skin will still need the proper homecare.

Avoiding triggers can help reduce the irritation. Prescription topical medications can provide a reduction in rosacea symptoms as well, as can laser or IPL.

As with other skin conditions, there are medications that can be prescribed for rosacea. Common topical medications for rosacea are antibiotic creams such as metronidazole, clindamycin and erythromycin. Other topicals include azelaic acid, sodium sulfacetamide, sulfur and tretinoin. However, these topical treatments can have side effects, like skin irritation. Some are not safe for women who are pregnant or planning to become pregnant. Depending on the severity of the rosacea, oral antibiotics like minocycline or doxycycline may also be prescribed. There are anti flushing medications, like clonidine, beta blockers, certain antidepressants, anti-inflammatories and antimalarials.

There are also many natural things you can do to help your rosacea skin, although it's all trial and error, and what might work for one, could not work for the other. Some people find that their skin improves with added vitamine D. There are natural anti inflammatory herbs, like boswellia, flax seed oil/fish oil, niacinamide, grape seed extract. Some find vitamin C supplements to be helpful. Or quercetin, oregano oil, curcumin, lysine. Keeping an eye on your dietary triggers can also do wonders. Cutting out some of the sugar you might eat, and processed foods to start with. Some foods are high in histamine, which can be a trigger (old cheeses for instance, tomatoes, bananas, yogurt, nuts). Some people see improvement of their skin by cutting out dairy (replacing it for instance with rice milk, almond milk). Some do better without grains. A lot you can still try, and always drink plenty of water and avoid too much alcohol (which is an inflammatory and will dilate your blood vessels).



November 1999. After a few weeks of some hefty stress, I developed mild eczema on my face that rather annoyed me- I had stopped taking my birth control pills (the eczema made me anxious and I suddenly linked the hormones from birth control pills to the eczema, without any real logic behind it btw, just fretting myself) and had started using a mild hydrocortisone (steroid) cream on a some areas of skin around my mouth and cheeks. My GP also advised me to use some vaseline on my cheeks and when I did this, I remember my face started to flush and burn a couple of days after I started with hydrocortisone cream. I wiped it off soon after, but I was flushed and burning red all night. I assumed that by the next day, things would be normal again but I woke up flushed and burning still. It stayed this way, sometimes I would turn pale again but with the slightest emotion, temperature change, eating hot food, drinking hot beverages and so on, heat and redness shot up to my face again. I was bewildered with it. After a month or so, it dawned on me that this was perhaps not a transient thing. Even college classes became a chore, because I would be on fire by the end of them. I started reading up on it, and suspected an allergy at first. The doctors had no real clue and said I just looked healthy with my rosy cheeks. "Uhm, yeah thanks but it burns badly!" They didn't take it serious and sent me back home. So I read all I could about the symptoms, had my mother involved who helped thinking along and made sure I went back to the doctor to get some health issues eliminated; had many allergy tests, tests for Lupus, SLE, ALS, all coming back negative. No one thought of rosacea. 

So I lived slightly paranoid and avoiding my triggers for 2,5 years. Trying to work around the triggers and assuming it would all settle again with some more time and patience. Eating made me flush and burn, going somewhere warm, going out, using skin care, crying, laughing. My skin turned from pale into bright red within seconds and could stay like that for hours. It would get super hot and burn like it was sunburned drastically. You could put your hand on a cheek and feel the strong heat coming from it. I continued to go out to pubs and clubs like I used to do, but it became increasingly difficult to enjoy it and not look in the mirror of the toilet every half hour. Coming home and removing the pancake makeup that I now used for going out was stressful, as I was even more red for days after from it. The flushing episodes made my face look swollen and puffy. And the worst part was that others only saw a 'healthy looking' girl, with nice apple cheeks. It was very hard to convince them that my cheeks actually burned, and that I couldn't care less at a certain stage about the way I looked, but more about what I felt like (although that was a transition thing, initially the color really bugged me). I remember talking to a friend about it and complaining about my mystery condition, and how I didn't know anyone who had the same problem. He said wisely that he would be extremely surprised if I were to be the only person on this earth to deal with this. That I had to keep looking and searching and would ultimately find out what it is and who else has it. That thought got stuck in my head.




Still not knowing what was wrong, but uncomfortable with all the limitations I had and the way my flushings seemed to worsen over time, I did found out myself that I reacted to certain foods. They matched the 'high histamine foods' foods which many people with rosacea also avoid, as I now know. This list included for instance red meats, tomatoes, egg plant, spinach, old cheeses but also alcohol, sugars and spices. I had visited homeopaths by then, had acupuncture (both no effect) and I had seen a highly recommended Chinese doctor at the other side of the country. The herbal drinks she gave me made my belly swell up and my face burn, and after months and months and more months of herbal teas and an anti inflammatory diet, I was still as bad, if not worse. I tried to forget about it. And after almost 3 years, still thinking and hoping I had some allergy that would pass, I had one whole year of diminished symptoms, and it felt like sort of a remission period. I had a new relationship, felt better, worried less, and actually ate everything I wanted ("bad" stuff, like garlic, tomatoes, chocolate, lots of cheeses, bread, sugar, ice-cream etc etc.), partied a lot for a year, drank wine. And only some minor flare ups! 



After a week in the hot Turkish sun, with very humid weather and 50 degrees C temperatures, lots of stress and the wrong birth control - with progesterone hormones, whilst I had strongly warned the docs I couldn’t handle them “because of my face”. But they promised me they gave me one with hormones who 'wouldn't enter the blood stream'. As if they would have any use or function then lol, well I know that now. But all that stuff seems to have led to full blown rosacea all over again. Oh, and I had also had a vaccination for hepatitis, before going to Turkey. My bf at the time said I was mad for having one, because it wasn't necessary in Turkey and because he thinks all vaccinations are poison anyway. When I visited my health specialist for the first time, he also asked if I had perhaps had a vaccination recently. Because he saw more often that they can trigger latent auto immune conditions. Hmmm. I did a bit of reading up and there is some research done on this topic too.. Dubious.

But by now I couldn’t even use any skincare anymore, my skin had become too sensitive for anything on it. If I stayed in a cool area, with a fan and little triggers, I seemed to do not too bad, but going out into the sun, into a warm place, to the supermarket, to uni, the pub, all made me flush and burn. People made comments about it, asked me if I had sun burn, why I got so red. I  tried to not let it affect my life too much, as my bf asked from me, as he hardly recognized me from the girl he had met some years ago. I felt in pain, ugly, overwhelmed. The relationship stranded after a few strained years, maybe even more for him than for me, during which I finally got diagnosed with rosacea. Knowing this I had some facts to build my knowledge around and I read and read till I knew as much as I could find about it. I saw several dermatologists in the country, who all worked with the dated treatment plan of :

1) metronidazol cream (or rosex cream), which made me more red and made my skin feel like acid was thrown at it.
                     
2) oral antibiotics (tetracyclines), which I had to take for 3 months and that gave me IBS and IBD plus intense flushing, even more than I normally had.

I tried otc antihistamines which did very little. I took moxonidine by now, a blood pressure lowering medication that a certain Dr. N. wrote about in his rosacea book. It seemed to work initially, mainly by making me hypotensive, and therefore also more tired, dizzy and drained. After a few years I felt it made me flush even more and I found out one of the side effects are vasodilatation, widening of the blood vessels. I tried diazepam and anything I read positive reports on and that I could my GP convince of to prescribe me. The only other option left seemed IPL or laser therapy at some point. In my next post you can read what happened when I had an IPL treatment in England. 





In hindsight, I asked my doctors how all of this could have started. I've been told by my latest doctors that they suspect that I already had the rosacea gene so to speak. Meaning in my case: the tendency to blush and an otherwise very pale skin. He thought that sometimes something has to trigger rosacea to erupt. For one person that can be stress, for another a steroid cream potentially, for another it is hormonal change or something else.




Ephemerality wrote in response to this on January 9, 2017: "Steroid induced rosacea does not requires long term usage of steroid. for some people, even 1 time application can do all the damage. don't believe the standard BS thrown out there by those "medical professionals". everyone's body is different;everyone's blood vessel flexibility/resilience/stability is different. maybe, it is true, for majority people, it takes months of steroid to develop rosacea red face; and there are people who never develop red face no matter how long they keep using steroid. however, for a small number of people, the full steroid damage only requires very short times (days, not even weeks).
There is no possibility to persuade those medical professionals to admit/believe the severe danger from steroid. biggest tools (pretty much the only tools) western medecines have are "antibiotic" and "steroid". by playing with those 2 things, pharma comps and docs have been able to make tons of shxt loads of money. especially those dermatologies, without steroid cream, half of them would show up with dumbface and lose job right there, because they really have and know nothing else to offer patients. It is all about money! 1 unlimited supply in the world for derms (and docs and pharma comps) are people. they can keep making money, have their "respectful careers", and pile up assets for their children, as long as general population keep believing their fooling with the notion that "short-term steroid use does not cause problem" and "steroid usage under direction of your doctors is safe".

And ephemerality went on to ask me: "There are not many much useful info on interrnet about treatment/recovery of steroid induced rosacea. also, it seems like a lot discrepancies regarding whether "steroid induced rosacea" can be cured or not. Some threads here say that it can be gone in 6 months. but, I notice that some people say that they are stll suffering from it even after many many years. Did you develop constant background redness (looks like a painted veil --- very diffused) right after hydrocortisone? Did you notice some kind of weird glistening/shine over all area you applied that steroid (but the glistenng is not from oiliness on the skin)? What did your derm say about recovery from constant redness caused by steroid?"



It is true; normally a short course of steroid cream use doesn't give people steroid induced rosacea overnight. It usually takes a prolonged time of steroid cream use before rosacea can appear. But I don't think in my personal case that it caused me steroid induced rosacea, strictly speaking, conflicting as this might sound. When you google images of  'steroid induced rosacea', it usually shows symptoms that look more like subtype 2, with thickened inflamed and more permanently red skin. You usually get that after prolonged use of steroid cream on the skin. My dermatologists said that in my case, they think the steroid cream somehow triggered my facial flushing and burning; that it triggered some predisposition for rosacea.
That I had the (dormant) rosacea gene so to speak, with a tendency to blush (very mild hint of redness after I drank alcohol in my teens), with very pale skin, and that sometimes something has to trigger rosacea to erupt. For one person that can be stress, for another a steroid cream potentially, for another it is hormonal change or something else.

Yes at the time my skin seemed to have a shiny veil over it, indeed, and showed redness. I had always had pale skin and never flushed like that, with such heat and redness in my face that it felt like a very bad and painful sunburn. That developed overnight. After that steroid use (and the stress that I had at the time won't have helped either) I suddenly got flushing episodes, where my face would turn red and hot and this wave of heat came over my face, lasting for hours sometimes. But when the flush stopped, initially my skin would look normal again. Now, 18 years later, I have a lot more background redness but I think that is just the natural progression of the rosacea, and all those years of flushing.



For strictly steroid induced rosacea, there seem to be patients who can get their skin back to relative normality after treatment. Antibiotics for instance, certain creams. For subtype 1 and flushing and burning, what I have, this hasn't proved helpful. I can mainly try to keep the flushing and redness at bay with anti flushing medication and trigger avoidance. I only used a hydrocortisone cream for around 3 or 4 days in the area around my mouth and nose, a bit on a cheek, and developed rosacea, flushing, redness and burning seemingly overnight from it. It was ridiculous really. The problem is that for some people on here even, with existing rosacea, short term steroid use doesn't hurt their rosacea. You just don't know beforehand if you'll be fine with it, or if you are one of the unlucky few who have their rosacea worsened or even started by it. But my derm always says to me that he thinks it is Russian roulette if you are a heavy flusher. He warns me against any type of steroid use, including steroid nose spray and eye drops.

The worst part is that the steroid use is often not even strictly necessary.. I had some mild eczema and it really didn't require a steroid cream, but I never had skin problems prior and never thought a short period of use could pose such risks. In a way, steroid creams can be used as an easy fix for all sorts of skin conditions, but I feel that doctors, both dermatologists and GP's, need to be aware of the fact that steroids can trigger rosacea in those with a higher risk for it, like a tendency to blush, to sunburn and people with pale skin that easily goes red.




During a long car drive in the summer, pictures taken with half a days difference, from pale'ish to red..








Note; I only gather personal experience, info from the net and from forums and use it for this blog. I don't do advertisement or making any money in whatever shape or form off of this blog. 


4 comments:

  1. Dear Nat,

    Life is too short to spend it dwelling on redness. Also, why in the midst of the splendor of life would you wish to yield to the mental imprisonment that is insecurity. Yes, the world overwhelms us with images that we need to have the 'perfect skin' to be happy, I put this in quotes because there is no perfect skin, but that doesn't mean we have to give in to this. I think if there is a definition of 'perfect skin', it's the skin we're in, it's ours only and we need to embrace it. Pure white skin is not perfect, in reality it's boring, to me it just shows the person hasn't lived properly. Every freckle, sun spot, broken capillary, blackhead, is a sign of a person that hasn't been afraid to live their life to it's fullest, I respect and am drawn to that. I'm not saying sun damage is desirable or admirable, but having the courage to go out into the world every day, with the fear and choosing to ignore it to fully experience life, is. I am a 30 year old man who has lived with a red nose and freckles since his teens, and I'm ashamed to say only now am I starting to make peace with my skin and love what I've got. I've wasted so much time fighting myself, that the sheer frustration drives me to accomplish things in this world. From this I've recently got married and become a father and it's been the happiest time of my life, which had I not opted to stay on the insecure, depressed, ashamed, path would have come a lot sooner. Your blog is fantastic, because it raises awareness of a serious issue in our society; the lack of redness acceptance. Everyday people need to be able to look at a person with a red face and see nothing wrong with it, otherwise we're all kidding ourselves to think that our society is heading in the right direction. What are we going to be teaching our kids ?, Oh Jack you tan so you can go out in the sun all you want, have fun. But Jill, you've got fair skin, you can't, you don't want to get the dreaded redness do you ?. So Jack grows up secure in himself, whereas Jill grows insecure, and has difficulties in relationships and in life in general because of this. I have a daughter, and I'll be damned if she grows up this way, she'll probably get redness since it's in her genes, but she's not missing out on life. In an ideal future, it's not something that she'll have to accept, because there won't be a problem with it. Global warming is increasing and white people go red, this is something the world needs to accept and embrace.

    Please don't control your life to the point where you're not enjoying it. It's fine to take care of your skin but don't obsess over it. Please take this advice from someone who's lost a decade of happiness to it.

    Peace, David.

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  2. Thanks David, what a lovely comment you wrote. I know what you mean.. things have really improved for me in that respect over the years; I no longer feel embarrassed to have a red face when I go out, I no longer feel less or uglier. But it would have been a lot easier and I would have achieved it a lot faster probably if there were more red faces out there. I understand what you are saying, I think, regarding society and the media giving us this pretext that we need to look perfect. What really made me so much less outgoing was actually the ongoing flushing. Baseline redness, which doesn't burn badly, is not ruining my life or day anymore. I actually went out last night to a party and had some alcohol for the first time in donkeys and had such a good time, and no flushing. But when I do, it's this bright red, scalding hot, face swelling type and it's impossible to ignore, it just demands instant cooling. So it is no longer the cosmetic aspect of it all, but more the physical pain, that makes me want to control my triggers.

    Have to say though that I've never been a social wunderkind and certainly not in groups and having rosacea and no way to hide it under make up in my case, magnifies all that, a lot. So I do let it dictate my life in a way. It feels like a massive heavy load for me as I need to cool all the time in order to stay pain free and keep my skin from flaring up. I find it embarrassing to drag my ventilator with me to friends, let alone people I don't know well. But it's getting better with time. I wished the world was set up for rosaceans, with cool spaces everywhere and fellow red faces all around us..
    Thanks for your comment and enjoy your lovely new life :)
    Best wishes Nat

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  3. Thanks for the prompt reply and the compliment.

    I'm glad you are learning to live with this and not stop it from you enjoying your life. As far as your comment "it would have been a lot easier and I would have achieved it faster it there were more red faces out there" as long as people like us are not condemning ourselves to a life indoors and do go out and enjoy our lives, then future rosaceans (or just people struggling with redness) will have the confidence to do the same. The more of us out there, the better the future will be, but only if we are consistent and remain positive. The mental perspective on this skin type (I purposely don't use the word 'condition' as I refuse to believe this is something that needs treating / correcting) will hopefully gradually change. I'll keep an eye on your blog and check in from time to time. I'm thinking of creating a similar site, I'm toying with the idea of "www.realrealself.com", which may sound silly but the site "realself.com" gets a lot of traffic with people searching for answers to their 'physical problems' and finding intrusive procedures and treatments. Whereas my site will be for a holistic approach to the mental problem, that have arised from people focusing on their perceived 'physical problems', and to teach them acceptance and provide support, from a non-judgemental community. Individually we are strong but together we can be indestructible, and to quote the late Michael Jackson (who had similar mental problems that resulted in his premature death), change the world and make it a better place.

    Stay beautiful and happy, all the best, David.

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  4. Inspiring reply David, I'll be very interested reading your writings in time due. Thanks for that positive contribution, very much appreciated :)

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