July 9, 2013. The last day I will EVER put steroids on or in my body. I am writing this 7 weeks later and I am going through the worst experience of my entire life.
Background: I am a 58 year old married male with life-long history of moderate, but manageable eczema. It was worst when I was very very young, putting me in the hospital once at age 5. At about age 10 in the 60's I had radiation treatment on my hands and feet. About this time I started using topical steroids. The stuff that you can now buy in a 4-pack at Costco was back then a prescription. Once the topical steroids started, my eczema was manageable and not that big of a deal. I had tubes of hydrocortisone everywhere and whenever it got worse, I slapped it on, sometimes everyday for long periods of time.
About 10 years ago I moved from Seattle to Texas, and my eczema got worse. A new set of allergens to be exposed to and a hotter and dryer climate had made things worse. My new dermatologist prescribed Protopic (a non-steroid immunosuppressent) and Clobex, a strong steroid to try to keep things under control. It worked and for the next few years I successfully controlled my eczema.
Early last year things took a turn for the worse. I was breaking out in areas I had never before and itching became a real nuisance. At first I thought it was allergies or too much coffee (I am a Seattleite after all) but nothing I did seemed to help. I was taking Zyrtec and when it wasn't helping any more and I stopped. That's when I got my first serious flare. My internet searching brought up "Zyrtec Withdrawal" and I was totally convinced this is what was happening to me. In the meantime, my steroid use was not a concern to me and I continued to slather it on. My symptoms continued to worsen.
Last April while searching for causes of unbelievable itching I was experiencing on my legs I stumbled across ITSAN. As I read the list of symptoms I was like OMG. I had every single one. When I looked at all the pictures that could be pictures of me I broke down. My elation of learning that there is a cure soon turned to despair when I learned not only how bad it can be, but how long it could take. I am 58 and have been on steroids almost my whole life. I could be in a living hell literally for years.
So, one may wonder why if I found ITSAN last April why my last date of steroid use is July 9. To make a long story short, I have been to many doctors and one of them (considered to be one of the world's leading experts on steroids) convinced me that he was about to put me in the hospital because my skin barrier was compromised so badly and that I could not go cold turkey. He promised me that if I took a cortisone shot he would wean me off of topical steroids. I agreed. If I can calm myself down enough to write a publishable post about this experience, I will.
Since then I am now going to UT Southwestern and am being seen by a couple dermatologists there, including the department chair. They do acknowledge steroid withdrawal is real. They do not agree with my complete insistence that I go cold turkey, but respect my decision to do so and are working with me. I will post more about this.
I decided rather late in this process to document this experience via this blog, but I think it is important. I have been so helped and inspired by reading others, and maybe I can help someone else. Also, this a more appropriate forum than, say, my FaceBook page, where I try to keep things light.
