Hello my red skin friends! My name is M and I am sixteen years old living in Southern California. I began withdrawal February 2013 and am currently around 5.5 months off of topical steroids! I have lurked for quite some time on the ITSAN forum and facebook group, but have not had the guts to make a discussion or blog until now :). I hope to find solace in the blogging community and somehow help others going through this by sharing my journey. Here's a little history on my life with eczema and steroid usage:
I had eczema ever since I was a young child, the usual arm crease, back of the knees, and around my mouth. I remember my arm creases were especially bad, as I had to wear bandages around them a lot. My sisters also tell me that they would hear me scratching my arms intensely at night because we shared a room. I also had childhood asthma, but that went away when I was still very young. My mother applied hydrocortisone and another topical steroid that was prescribed by my pediatrician (sorry we can't remember the name) on these areas, but she was wary with them because she heard about stunted growth from steroid use. As I grew older I had pretty clear skin except for a few minor areas. These included a bit of flakiness on my neck and mouth area, splits on the underside of my earlobe where it connects to my neck, and the rash on my arm crease would return from time to time. However, none of these problems would even compare to what I have now!
Around my middle school years (ages 12-13) I began noticing the flaking and rash on my neck. My mother gave me a Japanese cream to use, as my grandmother advised her that it healed her rashes. Little did we know, it was actually a topical steroid! At the time I was pretty much unaware of the dangers of steroids, so I applied the cream whenever my rash was particularly bad. I didn't notice dramatic healing, but it seemed to keep the rash at bay so I continued to use it on my neck and arms. Then, last year, I began noticing that the corners of my lips would split and crack. I always had dry, flaky lips, but this alarmed me. I researched online and thought it could be angular cheilitis, which is a bacterial/fungal problem. Also, as I am a dancer, I began discovering that I would get heart palpitations after dancing that would cause dizziness and fatigue. I thought I was anemic, but I was tested and my iron levels were fine. Around April 2012 I went to my GP and she gave me Clotrimazole, an antifungal topical steroid. I read the label and it said only those 17 or older should use the cream, so I was very apprehensive and used it only about 3 times on the corners of my lips. It worked fantastically, but soon the splits were back. I also developed dandruff and flaking on my scalp, but that went away after I used a shampoo called T-Sal recommended by my dermatologist.
Then, around January 2013 after having applied the Japanese steroid to the corners of my lips for quite some time, I developed a cracked, raised rash around my mouth. I was horrified as this had never happened before and rushed to a dermatologist, who prescribed me Triamcinolone Acetonide and told me to use it twice a day for a week. I asked her if there were any alternatives, because I was still worried about steroids and the risk of them affecting my growth. She told me to use a few samples of Protopic, but I found that it did nothing for me. I rushed home and applied the Triamcinolone around my mouth, and lo and behold it cleared up beautifully within a day! I was ecstatic; any traces of flakiness or redness was GONE. It was almost unnatural looking, the skin was too flawless I must say. It kind of scared me! After following her directions and applying diligently, I stopped after the one week was up. And sure enough, the rash returned full force in the exact same manner as before. This is when I knew something was wrong and began researching online. I discovered ITSAN and topical steroid withdrawal, and that is where my journey began!
I hope that this history wasn't too long...I'll update my photo progress so far very soon! Thanks for reading, I hope you have an itch free day guys!
Hi there,
ReplyDeleteSaw your post in the ITSAN forum and wanted to stop by and encourage you to keep going till you heal. The steroid cream did a number on me for 40+ years and I am much better after stopping all of it in the fall of 2010. Your blog will help many people in cyberworld. Hang in there and thanks for sharing. :) xx
Thanks so much, Joey!
DeleteI love your blog and I'm sending you my best wishes! Im a 27 years old girl from Sweden (my english is bad, hope you can understand me). Suffered from eczema since I was newborn. I have used topical steroids since then. When I was a teenager my skin was pretty good and I didn't use steroids then. When I turned about 20 years my skin became bad again. New topical steroids and since then nothing has become better.
When I read this blog post I came to think of the time when I tried Protopic for some weeks (no steroids during this time). My skin became exactly the way it supposed to be when you stop using topical steroids. Flared, burning, itchy, oozing but no flaking. I read that this is side effects when you use Protopic but what if this actually was the symptoms from red skin disorder or TSW? How did your skin react to Protopic?
Hi Karin, thanks for stopping by! I did use protopic on my face, but very little....maybe 3-4 tiny applications. My doctor did tell me that I would experience burning on application. I applied between my eyebrows and around my mouth, and like I said did not see any improvements and went back to steroids. When I quit steroids, these two areas were the first to flare. All in all I'm not quite sure if protopic added to my withdrawal but it is a definite possibility. Now at around 8 months I see improvements everyday! Hope you get some relief soon.
ReplyDelete- M