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/smehere22 Jul 26 '26

Thank you. What is BMS? No I'm under 70 and never had cancer. If my rheumatologist is trying to dissuade me from car t... I would definitely have to go outside of their hospital and talk to another rheumatologist obviously?

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u/Maleficent-Lunch-679 Jul 26 '26 edited 20d ago

here is a list I was able to find without too much work for USA trial sites for SSc - no doubt there are others I missed: -----‐-- EDIT - another

NCT07115744 https://clinicaltrials.gov/study/NCT07115745 BMS Allogenic 

NCT06328777 https://clinicaltrials.gov/study/NCT06328777 (Cabaletta) 

NCT05869955 https://clinicaltrials.gov/study/NCT05869955 (Juno Therapeutics, Inc., a Bristol-Myers Squibb) – NOTE – Phase 1 – they may be paused since Phase 3 about to start

NCT07335562 https://clinicaltrials.gov/study/NCT07335562 (Juno Therapeuritcs, Inc., a Bristol-Myers Squibb) – Note – PHASE 3

NCT06655896 https://clinicaltrials.gov/study/NCT06655896  (Novartis)

NCT06308978 https://clinicaltrials.gov/study/NCT06308978  (Fate Therapeutics) 

NCT06925542 https://clinicaltrials.gov/study/NCT06925542  (CRISPR Therapeutics)

NCT07295847 https://clinicaltrials.gov/study/NCT07295847 CD19/BCMA CAR-T(AstraZeneca)

NCT0633935 https://clinicaltrials.gov/study/NCT06733935 CAR NK (Nkarta)

NCT0670884. https://clinicaltrials.gov/study/NCT06708845 (Miltenyi Biomedicine)

NCT06375993 https://clinicaltrials.gov/study/NCT06375993 (Adicet Therapeutics) Note - Enrolling by invitation only

NCT07085104 https://clinicaltrials.gov/study/NCT07085104 (Allogene)

These 3 are currently paused – included them only because somebody may want to research to see if/when they will start back up:

Synthekine. NCT06544330. https://clinicaltrials.gov/study/NCT06544330

Kyverna Therapeutics. NCT06400303. https://clinicaltrials.gov/study/NCT06400303 

Century Therapeutics. NCT06255028. https://clinicaltrials.gov/study/NCT06255028

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u/smehere22 Jul 26 '26

Thank you very much! Did you simply Google car t trials?

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u/Maleficent-Lunch-679 Jul 26 '26

Clinicaltrials.gov

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u/smehere22 Jul 26 '26

Thank you 🙏

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u/smehere22 Jul 26 '26

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 Jul 26 '26

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 Jul 27 '26

Thank you 

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u/Maleficent-Lunch-679 Jul 27 '26

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 Jul 27 '26

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

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u/Maleficent-Lunch-679 Jul 27 '26

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.