Anyone after CAR-T or SCT transplant for Scleroderma?

Posted by Alta Net @altabiznet, 2 days ago

I would like to provide an update on my autologous Stem Cell Transplant for Systemic Sclerosis or Scleroderma (done at Duke, NC).

One year ago, before the transplant my scleroderma was progressing after 2.5 years into diagnosis, but I was 80% of normal functioning; driving and independent living; skin thickening and discolorations; joints stiffness; fatigue; Raynaud's; GI sensitive to various foods.

I am 11 months post-transplant: 20% of normal functioning.
Present issues: fatigue (still need caregiver help with cooking cleaning, shopping, driving); vasculitis and Raynaud's; joint stiffness; edema and fluid retention post chemo and steroids; GI sensitive; hypertension and suspected heart failure post chemo; iron deficiency anemia. My RBCs are in low normal post 5 iron infusions. Some of my WBCs are still low. My bone marrow is not fully reconstituted yet.

Skin thickening and discolorations got a little better, the only improvement I see so far. Hoping for faster recovery to begin at 12 months post-transplant, which is in 1 month, as projected by BMT Team at Duke.

Please share your experience with scleroderma treatments.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Pre-transplant treatments started with bone marrow stimulation with Filgrastim High Dose to make sure enough cells are available for apheresis (procedure to remove WBCs and RBCs, then put those through the machine to remove unwanted cell lines that are believed to be responsible for causing scleroderma). The remaining cells are returned later as a transplant infusion.

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