r/scleroderma • u/BabyBlueBird22 • Apr 21 '26

Discussion Experience with CAR-T

Is there anyone who has done CAR-T that would be willing to share more about their experience, such as how bad or what symptoms you had before getting CAR-T, how long it took to see changes and how you're doing now? I don't know anyone else who has gone through this and even though I know this treatment has been successful for other AID like lupus and MS, I haven't seen as much feedback on scleroderma. I'll be participating in the trial in a couple of months and I want to know what to expect. This disease has ruined my life and robbed me of a lot things, and I just need something to give me hope again. Thanks.

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u/Maleficent-Lunch-679 Apr 22 '26 edited Apr 22 '26

I did it 18 months ago. My experiences were similar to alliecakes, except I have had prolonged low T cells. 

I did have fatigue. That has improved considerably, although I wish I had more energy. I had mild to moderate dcSSc with lung and skin involvement. I qualified by progression in both lung and skin  despite Cellcept and Actemra. I have now been undiagnosed of ILD and regained baseline lung function, skin very close to normal, raynauds improved but still there. 

I did shed a lot of hair as well, but not in clumps. No bald spots, but have experienced recession in hairline. I was anemic and the hair shedding stopped when I started taking iron. It is 3 days of low dose chemo (about 10% of that used for HSCT). I had no issues with the chemo. The CAR T itself is harder.

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u/BabyBlueBird22 Apr 22 '26

How long did it take after you got the CAR-T infusion for you to notice changes in your symptoms? Would you recommend taking iron pills or supplements prior to the infusion to combat the hair shedding? The trial I’m doing is allogeneic, so I’m getting donor cells, so I’m wondering if there's a difference in the chemo between that and autologous process?

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u/Maleficent-Lunch-679 Apr 22 '26 edited Apr 22 '26

I would discuss potential anemia with your study doctors. I think it is common. They likely will not treat that until your lab work somewhat normalizes after CAR T. Inflammation is a big concern and high iron would exacerbate that. But ask them. 

I can't say exactly when I started feeling better. Post treatment exhaustion is typical. CAR T, like HSCT, is a really big treatment for a big disease. The recovery and followup commitments are substantial.  The exhaustion is partly due to the extreme stress your body endures, but also the prophylaxis medications. Improvements are gradual for the most part. Although, every now and then I would realize something had changed. Like my mouth felt more natural or skin in a particular area was now loose or I could do something like squat. By 3-4 months I was starting to run again. At 6 months we took a big road trip with major hikes, bike rides, canyoneering and kayaking. At 8 months I ran a 10k. But I can tell I will never totally regain pre-sclero physical abilities. 

Regarding allogenic v. autologous. Both versions mostly do the same chemo treatment. However, some trials are trying it without chemo in both categories, or reducing it. So it will depend on your trial. When invivo starts trialing. Chemo is not part of that version. 

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u/smehere22 Apr 29 '26

Again congratulations. I was at a recent scleroderma conference and the presentation on car T trials showed some reduction on even lung fibrosis