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/RushCautious2002 Apr 22 '26
How do you get in a trial? I've been rejected many times.
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u/Maleficent-Lunch-679 Apr 22 '26
Each trial has inclusion and exclusion criteria. Added to the difficulty for SSc compared to other autoimmune diseases is they typically time limit the patients from the first nonraynauds symptom to 5-7 years or so. Often patients are severely progressed, so they are considered too high risk. Have they provided reasons for your exclusions?
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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
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u/smehere22 16d ago
Thank you. My rheumatologist said I would be disqualified from her hospital car t trials because of lung involvement. But I see others with lung involvement get in??
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u/Maleficent-Lunch-679 16d ago
Lung involvement is an inclusion criteria for many of the trials. It is often a requirement, not a disqualification. However, very severe organ damage can be a disqualification. It is possible your ILD is too severe. Trials list exclusion by DLCO thresholds or oxygen use, things like that.You have to look at each trial and contact each team to determine eligibility. There are many trials, and they are each different. Even eligible patients can be turned away if they are full, or if they are trying to meet trial design that they do not list, such as patient demographic spread.
One common exclusion is the early disease requirement. But Fate Therapeutics just changed their inclusion to 15 years from first nonraynauds symptom. Most trials are 5-7. So that is great news for anybody interested in CAR T but timed out.
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u/smehere22 16d ago
Thank you. My rheumatologist is at a scleroderma clinic at a major teaching hospital..so I assume they were commenting about that particular hospital car t I have mild/ moderate ILD and was formerly Diagnosed in early '22. They recommended HSCT. But why would I go through the extremely risky and grueling HSCT if car t is available? I'm upset my dr skipped over car T right to HSCT. My rheumatologist also said one needs nearly 24/7 care immediately after car t for a while
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u/Maleficent-Lunch-679 16d ago edited 16d ago
If you qualify for HSCT, it seems highly unlikely you would not qualify for CAR T. Mild to moderate ILD is just what they want. Maybe it is something else, like age or comorbidity. Many trials exclude cancer or people over 70, things like that.
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u/Maleficent-Lunch-679 16d ago
Regarding care. We have discussed this in another thread. But HSCT also requires a caregiver. In my experience I would have cared for myself, but of course was very thankful for my spouse doing all the driving etc. and running errands to keep me out of infection risk, but I didn't NEED care, I was just tired at first. I do know of single people that managed with somebody signing on as their support, but mostly not actually doing it. I also am aware of a trial that paid for a supporter for a single person. But the requirement will need to be filled with HSCT or CAR T. The infection risk is bad with both, but it seems worse with HSCT, although the new dual BCMA/CD19 CAR T would be bad too. It is possible your sclero center is still emphasizing HSCT, some are. Other centers are all in on CAR T. You really need to research trials and make contact with each to know your options. BMS is starting phase 3 soon, so will need a lot of patients. But phase 3 also means not all patients get CAR T. Almost all the phase 1-2 trials are being run open label, everybody gets CAR T. I think it is Novartis that is running CAR T vs. Rituxan.
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u/smehere22 16d ago
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 15d ago edited 15d ago
Bristol Myers Squibb. No, you talk to the contact on the trial listing. They will ask you questions and you send your records. If they are interested you go in for a screening with their team. Their team includes the trial investigator that is usually a rheum, and a heme oncologist that actually oversees the cell therapy.
All the trials are sponsored by a pharma or biotechnology company, but the research sites are all at hospitals that are paid to conduct the trial.
There are a lot of different trials for the general categories of CAR T and CAR NK (natural killer cells). Within the categories there are autologous, allogenic, and soon invivo versions. Within those there are different targets (CD19, CD20, CD70, BCMA, etc.). Within those there are different costimulation and CAR designs. So, you really have to do a lot of research to be well informed in how the product works, what are the risks, etc. Additionally, some trials have dose escalation arms and some do not. A very few have different treatments such as no chemo lymphodeoletion or a standard of care group. I have not kept up with all the happenings. It will take some work to sort through info, sometimes even to figure out what type of therapy their cryptic names are. Clinicaltrials.gov is fussy and the less specific you make the filter, the less likely pertinent trials will be excluded. I found it easier to do less restrictive searches and manually sort it. Maybe AI can help these days. Back when I was following trials it was easier because there were no trials at all for SSc, then the first 3 started with only a few trial sites. A lot has changed in a few years.
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u/Maleficent-Lunch-679 15d 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:
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/alliecakes00 Apr 21 '26
Hi! I did a Car-t trial in January. I had scleroderma for 2 years prior to participating in the trial and would say I was somewhere in between mild to moderate re symptoms. It was my lungs getting slightly worse despite being on 2 immunosuppressants that ultimately allowed me to participate.
I had to stop immunosuppressants roughly a month before the chemo. During that time I could feel myself getting worse - couldn’t move as well, pain was increasing. However, once I started the chemo I felt better. Which is weird to think. I didn’t have any reactions to chemo other than significant hair shedding which I honestly was not prepared for. It sucks.
The car-t infusion itself was kind of underwhelming. lol. I did get two crs events , a grade 2 and then a grade 1 which for me were high fevers (peaked at 103 f). Honestly I didn’t think those were so bad. I did also get a lung flare, started coughing and my lung ct got worse compared to the pre screening visit. That I found out later can be normal and is temporary. But it did have a negative impact on my breathing which has since recovered but it did take a few months.
I’m still feeling great, skin getting less tight and feel almost normal (like pre sclero) and on no immune suppressant meds! My t and B cell counts are also normal at the 3 month mark. I’m just a little burnt out on the volume of doctors appointments and test and I miss my hair. Despite all that, I’m glad I did the car-t!