Thursday, August 16, 2012

6 weeks into TSW

So I've been steroid free for 6 weeks, and overall I would have to summarize this experience by saying that......  "it's complicated". So what I've done for myself is make a google spreadsheet that I update daily. I've made a bunch of categories like "sleep", "medication", "moisturizer", "showers" etc. The most important categories are the first 5: Itching, Redness, Flaking, Lesions (body), Lesions (head). All of these categories I will rate as low, medium, or high depending on how I am doing for the day. This spreadsheet is going to tell me how long my flares are, my overall irritation level, how long my good days typically last, and if I'm improving overall. I think this spreadsheet will prove to be pretty useful, and with google docs it's easy for me to access while on the road (which is important for me because I travel a lot). I think I'll typically update this blog every couple of weeks and for any major breakthroughs.

Out of the past 6 weeks I've only had 7 days of good skin which started about 2 weeks into steroid withdrawal. Amazingly enough, during those days I also quit all moisturizers, and only took 1 shower a day!!!!!!!!!!! (the more showers I take, the worse my skin gets). It was an amazing week, I was even able to drink alcohol without going into an itch fest! After that week my skin turned flaky and itchy, and I needed to start using my aveeno baby eczema relief cream on my face, with coconut oil on my body again. Since then, it just kept getting worse. The last 12 days I would classify as a bad flare (rash) mostly on my upper body, my head, neck, and ears with a medium level of irritation on my face. I was oozing, flaking, itching, and waking myself up (an hour after falling asleep) to crazy itching. One night I took a shower at 3 am after a real bad itch. Yikes, not good. Last night I was lucky enough to sleep mostly through the night and not itch. I used an icepack on the back of my neck for about 20 min. before I fell asleep. I'm not sure if that helped, but I'll try it again tonight.

I did visit my new dermatologist last month. I explained the situation with my long term hydrocortisone use on my face and I could tell she was a little shocked. I actually made a one page medical summary  of  my history, and prescriptions (over the past 4 years) and gave it to her right off the bat. I did this because it is much more effective than giving them 50 pages of medical history that their never going to read. She definitely realized that I wasn't the typical patient and after she realized that I was not going to accept any more steroids, we had a discussion on my alternatives. First I wanted to rule out that the flaking was not fungus related (which she didn't think it was), and now I agree. Secondly I wanted to know what was available to try and reduce itching and she went through the typical antihistamines. I also just needed a dermatologist in general, and I think I got a good one (which is, one that is willing to listen to me!). If things were to get really bad, I could go down the immunosuppressant route. Fortunately, I don't need that at this point. My tsw is bad, but at least it's tolerable.

On a side note, my wife and I got to go on a quick 4 day trip out to Park City, Utah last week which was a nice break from all the humidity here in NC. We hiked and mountain biked up in the mountains which was a lot of fun!



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