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Anyone with Systemic Sclerosis or Scleroderma?
Autoimmune Diseases | Last Active: 10 hours ago | Replies (12)Comment receiving replies
Update to my autologous Stem Cell Transplant for Systemic Sclerosis or Scleroderma (done at Duke, NC).
Before transplant: 80% of normal functioning with driving and independent living; skin thickening and discolorations; joints stiffness; fatigue; Raynaud's; GI sensitive.
11 months post-transplant: 20% of normal functioning. Persistent issues: fatigue (need caregiver help with cooking cleaning, shopping, driving); vasculitis and Raynaud's; joint stiffness; fluid retention post chemo and steroids; GI sensitive; hypertension and suspected heart failure post chemo. Skin thickening and discolorations got a little better, the only improvement I see so far.
Please share your experience with scleroderma treatments.
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@altabiznet
During autologous SCT transplant: Vasculitis and Raynaud's got worse immediately after total body irradiation, transplant, and chemotherapy, accompanied by rapid weight loss. I lost 25 lbs within 4 weeks post-transplant. All of my subcutaneous fat was gone. The skin did not look good for all of my body. No nausea or vomiting post chemo that would contribute to such rapid weight loss.