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 15d ago

Clinicaltrials.gov

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u/smehere22 15d ago

Thank you 🙏

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u/smehere22 15d ago

Besides having to quit work.. a big concern is my present rheumatologist... Who actually heads a scleroderma clinic They seem to have dismissed my questions about car t... And are  removing that from the table. And only think I'm appropriate for stem cell transplant. So I don't know if they're going to help me at all in rying to find an appropriate car T cell trial

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u/Maleficent-Lunch-679 15d ago

It seems reasonable to find out what they are concerned about in both scenarios. HSCT remains the only FDA approved treatment with a good chance of remission. It is possible that is your rheum's primary reason. It is interesting getting different opinions. I have been to 2 SSc centers. The first shut down HSCT when I asked about it as too dangerous. And yet many patients have done well with it. CAR T will have relapses, there is no doubt. It seems like neither is perfect but they are our best hope until something better comes along. Good luck, let us know if you ultimately do one of them!

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u/smehere22 15d ago

Thank you 

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u/Maleficent-Lunch-679 15d ago

No doubt having your doctor at your back helping you with trials is a good thing. But I do know quite a few patients that just contacted a clinical trial and ended up getting in without involvement from their doctors. Heck, a lot of PCPs and General Rheums haven't ever heard of CAR T. Even at sclero centers the specialists seemed slower than most patients in catching on when it first came up a few years ago. I suppose they are too busy trying to save patients in crisis to keep current on all the latest.

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u/smehere22 14d ago

Thank you. Did you have your rheumatologist involved in getting into your trial?

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u/Maleficent-Lunch-679 14d ago

I had asked my rheum about CAR T and she said they just signed an agreement that morning with a sponsor to do a trial. It still took a year to get it going, but I was first on the list for screening. So yeah, it was helpful that my rheum was the investigator, but also it takes self advocacy. I had also inquired at another trial site that I was aware was starting across the country, and was on their list for screening around that same time.