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The best thing that’s happened to me

Posted: Fri Aug 19, 2022 3:34 pm
by RosaceaAndAfter
The best AND worst thing that’s happened to me has been my corticosteroid induced rosacea/withdrawal. When i was going through it, this forum helped me cope and find treatment options. I thought recently, “it’s give back time.” So here I am writing about what worked, what didn’t, and what the experience was like:

A few years ago i ran a course of accutane for mild to moderate back acne. During the course, i would have mild spots of Seb Derm on my face. To treat this, i dabbed some clobetasol (THE MOST POTENT STUFF IN THE WORLD) on it. Worked like a charm. After my accutane course, my seb derm worsened and i put clobetasol on it. Poof! Gone. For about a day. Then it would come back. I repeated this cycle for about 3 weeks or so until one day, my face started glowing red out of nowhere. I couldn’t imagine what it might be, and it only lasted an hour or so. Then it happened again, and again.

I immediately made an appointment at a top Boston dermatologist. Skincare Physicians. I went in and told them what was happening. She looked at my face and said, “this is rosacea. You probably always had it and are just now noticing it.” Me not being a doctor, i agreed. She then treated me with V Beam laser. Not 12 hours later, my skin took a turn for the worse. I broke out in an extremely scaly, itchy rash all over my face, in addition to the flushing. I went right back and showed her to which she said “you’re having a flare up.” I told her again about my corticosteroid use and annoyed said “if you want, I’ll biopsy it for you.” After the biopsy came back she agreed that my skin rash wasn’t rosacea, it was eosinophilic in nature (essentially just proving my skin was detoxing off clobetasol)

So i go online and read about people dealing with the same thing. Some doctors advise discontinuing use immediately. Believe me, i tried. The rebound was so severe, i couldn’t go outside (yeah, that bad). I cried and cried. My unbelievably supportive partner told me he loved me anyway. I stopped going to the gym. I missed weddings and dinners. My confidence was gone.

I decided to ween myself off. I started applying the clobetasol once a day instead of twice, and dealing with the rash in between which lasted about 2 weeks. I then moved down to a less strong steroid twice a day, then once. I did this step down process for about 4 months. The symptoms had subsided tremendously. My skin still wasn’t back to the way it was, but the flushing and diffuse redness had abated and now i was just dealing with occasional hives and flakiness.

I started applying emu aid (THIS REALLY HELPED!!!) which really calmed my itchiness and improved my rash. I was off corticosteroids completely, and now used emu aid twice a day. I put dr Jart cicapair to help disguise any occasional itchy hives, and some decent concealer if anything was really bad. Slowly, i began to feel myself again.

Years later, i can tell you what I’ve tried and what worked and what didn’t: (btw i did go back and get more v beam to deal with any broken blood vessels from the severe flushing)

My skin is now 97% back to normal, and I’m very very careful about any corticosteroid i apply anywhere on my body. They’re not evil, they just should be used with caution. This was one of the hardest battles I’ve ever fought. I had to stare down my vanity in the eye and find my own self worth in spite of everything. I truly believe i was made a better person because of steroid rosacea. I don’t flush anymore although I still occasionally get a hive, but only once or twice a month. I’m not sure if that will ever stop happening but they disappear within a couple of hours. Way better than 6 at a time everyday!

VBeam works!
Emu Aid works! (Only for itchy rash, not for any diffuse redness)
Dr Jart Cicapair (great red cancelling tinted cream. I occasionally still use it just to even out skin tone)
Honey/coconut oil masks didn’t work for me
Beta Blockers during the flushing stage didn’t work me
Bleach Baths during the intense itchy rash stage didn’t work
Elidel did not work for me and actually made me flush worse
Infrared therapy… maybe works? Science supports it, although i didn’t notice a huge difference