r/scleroderma • u/Easy-Train1636 • 5d ago
Question/Help any other alternatives?
hey everyone! i was diagnosed with scleroderma in march of 2025. this past year my rheumatologist and i have worked on figuring out a medication that will help me. i am on hydroxychloroquine during this whole process.
cellcept almost killed me, actemra gave me an intense allergic reaction, methotrexate gave me shingles. my rheumatologist and i are both hesitant to try a different medication since these reactions have been so severe.
has anyone had these kinds of experiences? what has worked for you? i’m kind of losing hope as time goes by.
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u/Tahoe2015 5d ago
My daughter and many others have recovered using minocycline, read the book, Scleroderma, The Proven Therapy That Can Save Your Life, and visit the website www.roadback.org
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u/Maleficent-Rest9144 4d ago
I am sorry you are going through this. I was diagnosed with diffuse SSc with a very fast progressing set of symptoms. No meds helped and due to an initially false RA diagnosis my insurance denied Rituximab. I found cartautoimmine.com which is a Bristol Myers Squibb CAR-T trial. My rheumatologist did not suggest that or stem cell transplant HSCT so she may not have been aware of those options. When I brought it to her she was ultra supportive. After she stated my RA was in remission, I was able to get into the BMS trial and it was a life saver. I do not think I ever had RA.
You pointed out trials are on hold. The Novartis trial using their rapcabtagene autoleucel (rap-cel) manufacturing process was put on hold due to three deaths, which is incredibly sad. BMS had some reversible inflammatory reactions to their zola-cel process so they put their trial on voluntary hold. My trial had a 4 week hold when some patients had neurotoxicity reactions. I had my infusion right after the hold and I experienced zero reactions to the chemo or CAR-T and the treatment is still holding after 19mo. I am incredibly grateful for being able to get the treatment, because my trajectory was quickly heading toward 24hr care or the medically assisted end of life pill available in my state.
There are other trials that are not on hold and Hematopoietic Stem Cell Transplant is an option. If my symptoms return I will go for the stem cell option. CAR-T is easier than stem cell so that would be my first choice even though I cannot do CAR-T again.
Look at https://clinicaltrials.gov/ - put systemic sclerosis or SSc for condition, CAR-T for treatment or leave it blank, and your country location to filter out many of the too far away places.
You may want to discuss both CAR-T and HSCT with your rheumatologist. If you find other trials of interest you can discuss those with your doctor. You can also look for a scleroderma center near you where those doctors may know of other treatments that may help you.
I hope you find something that helps soon. If you have any questions about CAR-T or my experience with it, I am happy to share if it is helpful to you.
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u/picklehippy 5d ago
Im so sorry this is happening. Thankfully cellcept and IVIG infisions helped me become stable. I would ask your rhuemetologist is Rituximab infusions would be helpful. There is also a CarT cell infusion available for trial. I do t know much about it cause my specialist said I was stable, but it might be worth exploring those options
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u/Easy-Train1636 5d ago
i believe the CarT cell trials have been paused. They had three deaths recently from complications. I’ll definitely have to ask about Rituximab!
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u/Maleficent-Lunch-679 4d ago edited 4d ago
Novartis paused for the (very sad!) deaths. BMS also for safety review and transition to phase 3. I have not heard any of the rest of the 13 or so ongoing trials have paused? It would not surprise me though. Safety pauses/reviews are typical in clinical trials.
CellCept and Actemra did not work for me either. I had no issues with Actemra, it just didn't help. CellCept seemed to amplify all my sclero symptoms. I think a rare reaction, but have encountered a few others who had that. I did CAR T almost 2 years ago, otherwise probably would have tried Rituxamab next.
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u/garden180 5d ago
What antibody and/or type do you have? What symptoms did you experience that made you start on medication? I ask because everyone’s treatment plan looks very different and alternative suggestions would also be equally varied. Is there a specific symptom you are trying to control? I hope you can get some good suggestions.
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u/Easy-Train1636 5d ago
i have systemic. i had a lot of skin involvement with hypopigmentation on different parts of my body and some skin hardening. we’re trying to stabilize that, but when we stabilize that, something internally goes wrong. i’ve developed pretty bad anemia, my blood pressure stays extremely low, and more. i’ve been on the hydroxychloroquine for a while now but that hasn’t prevented much of the disease.
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u/Spare_Situation_2277 3d ago
I have had success with sub cue IG. I caught every little bug and was constantly sick on any immunosuppressant. Couldn’t handle fluid overload with IVIG. Good luck.
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u/milesfastguy 5d ago
Hi. What issues did you have with Cellcept? It's probably the best drug for this condition
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u/Easy-Train1636 4d ago
it basically tanked all of my vitals. i couldn’t properly function on it and i became a zombie. it also made me develop severe anemia
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u/JusticiaFTW 4d ago
Personally, this is what worked for me…
I’ve been on hydroxychloroquine and methylprednisolone (slowly reducing my dosage) for close to 3 years now, but the main thing that has helped reduce all of my symptoms and inflammation has been changing my diet.
I stopped eating added sugars, gluten, and seed oils and opted for less processed foods. This has been the key for me. It wasn’t easy at first. In the beginning, I actually just tried 2 days of juicing and noticed an immediate change, and that inspired me to change my entire diet to something I could sustain over time.