Back when I first realized I may be addicted to topical steroid, I wrote a detailed email to Dr.Rapaport. I thought it would be useful for some people. I edited some of the email for accuracy as I remembered extra details (usually in parenthesis).
Dated August 21, 2013:
I am currently a pre-med student at UCLA, going to be a senior. I was diagnosed with atopic dermatitis from infancy. I also had asthma, which went away eventually – I was prescribed to regularly take inhalers, but I did not take them as often as I was supposed to (I’m a bad patient aha). For my eczema – which would mainly affect the creases of skin, inner elbows, back of knees, ears – I was given something to take by the western medicine doctors, called “immune boosters” but I can’t help but think they were antihistamines – it would explain why I can take three doses of hydroxyzine (enough to knock out my 170lb husband. I’m sub 110lb) and still would be wide awake. As a child, my parents tried everything – both Korean traditional medicine and Western. Edit: this means I took pills regularly and applied things topically. For years. Not exactly sure what they were. Possibly weak topical steroids? Then in fourth grade, I was given a cream, that I have no idea what it is (probably topical steroid), that made me better 100% after daily application for two weeks. I stayed better for a bit, I believe, then I immigrated to America.
After the immigration, my skin wasn’t affected by eczema very much – just a tiny bit of patches in the creases. I think I managed them with Fluocinolone Acetonide cream .01% (class 5, lower-mid strength), starting from around 8th?9th? Grade. They definitely came and went though. I think I mainly had issues during summer, rest of the year I was ok. Then senior year of high school, it started to creep up more again but it was manageable by Fluocinolone Acetonide, but I think I had less breaks. Then I started school at UCLA (fall 2010), and it started to get worse and worse. I am sure the dirty dorms didn’t help. By spring quarter of freshmen year, I was red all the time. I also overused the cream (my physician didn’t give me any instructions) and began using the Fluocinolone Acetonide cream .01% (class 5, lower-mid strength) on my face, almost everyday. This definitely thinned my skin, and I stopped, but the redness and itchiness persisted. I went to my pediatrician, who said in all his years of practice (he is about mid/late fifties), he hasn’t seen anything this bad. Edit: I totally unknowingly went though a form of withdrawal. Looking back on photos I’m all red and the escalation of symptoms started when I went to orientation for a week and forgot my topical steroids. I was referred to dermatologist, who started me on Prednisone for a week- it worked while I was on it but no longer. I was then put on immunosuppressant (cyclosporin), then later changed to another immunosuppressant (Imuran). I was given Triamcinolone Acetonide .1% (class 4, mid strength), as well as hydrocortisone cream 2.5% (class 7, least potent) for my body, and face, respectively. While on Imuran, I developed herpes and staph infection on my face, then was instructed to go off it. My scalp was flaky and itchy all the time, and would weep, and I was given clobetasol propionate solution .05% (class 1, superpotent) to spray on my hair as well as fluocinolone oil (class 6, mild). I was also on vegan diet as this time, I’m not quite sure if that helped at all. When I took a scratch allergy test, everything came back negative, although I know that I still get hay fever, and there are certain environment which would make me sneeze and make my eyes and throat itchy and water. However, during this test I was on immunosuppressant (but not on antihistamine), so the results may be false negative. My parents made sure everything was clean, and detergents were free of everything, but I didn’t particularly get better. That summer was rough.
By the fall of sophomore year, I was better. Dermatologist gave me two non steroid cans for face – protopic and elidel. I used them everyone I washed my face – usually one a day, sometimes twice. Whenever I would have flares, I would use various creams, and it was under control. I did feel hydrocortisone didn’t really do anything for me though. However, by junior year, I would have bigger flare ups, and it seemed that I was never really 100% free. This summer I would have big flare ups – I should mention that now the flares are body wide. It is all over my back, the front, all over my arms and legs. I don’t know if it is eczema, but my genitals itch a lot as well, usually worse at night. The last flare up I had, in which skin/scalp was very itchy and oozing, I wasn’t using steroids for about a week or two before I caved applied everywhere for couple of days, and it got much better. I didn’t use steroid for about two days after that because my skin was normal, and now I am starting to see patches and becoming itchy again. I had two days in which I felt good. That’s it.
I had a patch testing done at Dr.Rap’ s office. It was very expensive :( and turns out, I’m only really allergic to the hypoallergenic tape they used to secure everything. Double :( I know I couldn’t wear anything but titanium and platinum for more than couple days, without them itching and oozing, which confuses me about the testing results. I risked it and wore 18k gold necklaces, etc till about 2010. Earrings I would sometimes do well, other times no, so I’m not sure what’s happening there. I’ve never really worn rings or bracelets, but since my forearms and fingers don’t get eczema, I may have done ok with metals there. I haven’t tried wearing metal anywhere since. The only jewelry I’ve written since withdrawal is my engagement ring, made of 95% platinum. I had a “temp” wedding band that I’m not sure what it’s made out of – husband says it was super cheap, and it has 925 engraved, making me think it’s sterling silver. I previously couldn’t wear it when I was younger. Since withdrawal, I wore it couple times, but after about day or two it would get itchy. Lately though, I’ve worn it for about two weeks without problem!
April 21, 2014: I’ve been withdrawing from topical steroid for eight month and two days. I feel great and look pretty good too. I wanted to note that my scalp and face is the most affected. I have few patches (about two inches or less sq inches area) on original eczema area- elbow flexor, inner upper arm, arm pits itch a little. They come and go. My scalp however, and face, I feel is still recovering. They are more consistently bad – as in I have yet to have a true break, where the other patches have seen their totally clear days. This makes sense as I used the most potent steroid on my scalp only. My face has seen most steroid and immunosuppressants and it has a very high absorption rate.