cemile

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About cemile

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  1. Thanks all for your suggestions. I am not sure if I can tie anything to the chair in such a way that it would not move. I have already tried the doughnut and u-shaped cushions, which unfortunately did not help. i am thinking of trying some of those "bubble butt" silicone undies, but don't know how well they'd stay put, as I have no real butt left to speak of to hold them in place :( In any case, thanks again and keep the ideas rolling if you think of anything else. As always, much appreciated. cemile p.s. By the way, a friend gave me some soothing muscle lotion with mint and geranium. Kind of pricey, but it gives a nice tingle and some relief to sore/tender/sensitive skin.
  2. Hi all. Looking for a bit of advice. Because of the SSC itself and associated weight loss, I have significant pain in my tail bone and sits bones when I sit (which is 24/7). At night, I sleep in an electronically-controlled reclining chair, which I keep pretty upright due to severe GERD. The problem is, no matter what sort of soft pillow/cushion I put under me to help the tail bone pain, it seems to shift when the chair tilts back or the legs come up, which causes it to painfully bunch under my tail bone. Since I am pretty stiff and immobile, it means I am woken up in pain every 20-30 minutes and have to shift position, which sometimes marginally helps. I haven't slept through the night in ages, despite taking sleeping meds, pain meds and muscle relaxants before bed, and I'm exhausted! Any suggestions for dealing with the problem? Would really appreciate it. Thanks, cemile
  3. Shirl, As far as I know, Gleevec is only on a trial basis for SSc. I tried it for six weeks but finally had to stop due to severe fluid retention, rib pain and lethargy. still, I know some others have had good results on it, so it may be worth trying, depending on your individual symptoms. Good luck. (Webmaster Update: Gleevec trials for scleroderma were discontinued because it was not shown to be useful and there were adverse side effects.) best, cemile
  4. Karen, I also got kind of sudden, iron-deficient anemia around the time I was getting cytoxan infusions, although they are not sure if that was the reason. I had a transfusion and what was supposed to be an infusion of one-year's worth of iron, which lasted for about 2-3 months before my levels dropped again. My numbers finally came back up, but they never figured what caused the drop or the rebound. I hope they can figure out your situation. best, cemile
  5. I have just gotten approval from my insurance for an allogeneic SC transplant in seattle (lung function too low for SCOT) so it should be happening by mid-June. Unfortunately, transplants for scleroderma are still in the clinical trial phase, so not really available "on request". I'm just super glad that this is going to happen soon, as methotrexate, cytoxan and cellcept have all been unsuccessful so far. Good luck with your own care. If I could cross my fingers for you, I would. cemile
  6. I have diffuse SSc with significant skin tightening. Recently, I have noticed shallow thin scabs on the backs of my thighs, which I think is from the skin tearing when I sit down or get up. Anyone else have this problem or suggestions for helping it? I am putting lotion on several times a day, but the skin is still very tender. Thanks, Cemile