Monday, June 10, 2013

Taper Dose, Folliculitis, and Sateen Sheets

So I went off Cyclosporine for a about a month and my skin got so bad I decided to get back on it. I'll post a picture when I get a chance, but basically my entire body was covered in open cuts from scratching. I was not sleeping and had all I had all the other typical TSW symptoms. It was definitely a low point for me. Now I'm on a taper dose of cyclo and I expect to stay on it for about 2 months (until around the end of July). At that point I will go off cyclo for good. I am prepared to take some time off work because every time I get off it I get really bad. I decided to stay on the taper dose because I can still function while on it, and I have a lot of important stuff that I need to do during June and July. It's also better for me to push back taking time off work as long as I can. I'm still Itchy, Red, and Miserable on the taper dose, but at least it's manageable.

During my low point I noticed that I kept getting more and more pimple like bumps all over my body (chest, belly, back, arms, legs, butt, head) and I could not get rid of them using shampoos and cleansers (silicic acid, selenium sulfide, benzoyl peroxide, hibiclense). I finally realized it was folliculitis and went to my Dr. and got an oral antibiotic Rx which helped calm that down.

I had a miserable experience with sateen sheets that I though might be helpful for others to know... I bought these fancy calvin klein sheets not knowing they were sateen. They felt really good, but when I slept on them I would wake up in a pool of sweat! Yuck! I figured that it was just me and my tsw, and it couldn't be my nice new soft sheets, but when my wife finally got home a few days later, she had the same reaction. We did a google search and realized that a lot of people have this same reaction when sleeping in sateen sheets! Who'd a thought? I pretty much NEED to have just plain old cotton clothes and sheets or else my body freaks out.

Well, that's it for now. Next month will be a year without steroids and it sucks that I'm still just as bad as day 1 of withdrawal. Hopefully things will get better for me and I'll keep you posted as things progress.

4 comments:

  1. Blimey, Jason, you're a real trooper! Yes please keep us updated on progress as we'll be rooting for you! I will send healing vibes xxx

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  2. Jason, you've not posted here for a while. How are you doing?
    Elaine xx

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  3. Hey Elaine. I'm still on the taper dose until the end of this month (July), so I've been doing pretty well. I'm still fairly itchy, but I do better when I stay busy. Not stressful busy, but just doing stuff to keep my mind off itching. I still have that sour smell on my skin when I itch so I know I'm not out of the woods yet. This next month is going to be huge because it will be the 3rd time I've tried to quit cyclosporine. The last two times I lasted about a month before it got unbearable. I'm hoping since I've been off steroids for over a year now that it will not be as bad, but who knows. Life is pretty normal now, other than 1-2 itching fits a day, and of course the long sleepless, itchy nights. It seems like I keep having this reoccurring folliculitis which only compounds the problem, luckily my derm found me an antibiotic that has been working fairly well (minocycline). I'll update more over the upcoming months. Wish me luck!

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  4. hi Jason I hope things have eased up on you a bit. my sister was on cyclosporine and she went through hell getting off it and the TSW symptoms too. hang in there we will all heal in the end! xxx

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