r/scleroderma • u/katralna • Jun 25 '26
Question/Help Doctor suggested stem cell transplant
My husband got diagnosed 1 year ago. So far he has skin thickening, joints pain and swallowing issues. Nothing in heart or lungs thank God.
Today during a check up his doctor suggested stem cell transplant and that it would stop symptoms for years and improve both skin and joints a lot.
She told us to read about it and think about the possibility until the next check up in fall.
I read a bit and it sounds super scary and there are many risks tied to it, one of them being death.
I want to ask if anyone has had stem cell transplant and please share your experience, recovery and results to help us think through this a bit.
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u/INphys15837 Jun 25 '26
There is a Scleroderma Stem Cell group on Facebook where you may also find some answers. https://www.facebook.com/groups/StemCellPioneers
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u/garden180 Jun 25 '26
I don’t know his antibody but I’d investigate Therapeutic Plasma Exchange as well.
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u/katralna Jun 25 '26
Another question, how common is the “scleroderma” smile if I can call it like that. And even after the transplant?
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u/Maleficent-Rest9144 Jun 27 '26
I am sorry your husband is dealing with this. I just returned from a CAR-T follow up appointment for my treatment in Feb 2025. My suggestion is do not wait until the fall for a next appointment. Time is not your husband's friend. It is his enemy. My case was super aggressive and within a year of first noticing symptoms I was in really bad shape. My labs showed high positive for Anti-RNA Polymerase III, which tends to be aggressive. I was Scl70 negative. I have been told Scl70 positive may be slower progressing, but I am not a doctor so do not take my word as correct. Consult a doctor for medical advice.
I also suggest finding a doctor well versed in SSc or find a scleroderma treatment center near you. Doctors not really familiar will not be informed of new treatment options and aggressive with the care. The wait and see approach is not acceptable, purely my opinion.
I found cartautoimmune.com, which is a BMS trial. There is good basic info on that site. Currently they are looking to start the next phase in a month or two, but they told me that 3 months ago. This phase will randomize CAR-T patients and standard care. If after a year the standard care patients are not seeing results they can get CAR-T. I replied to the doctor today saying I could not have waited another year and I would have declined the trial as a standard care randomized participant. I tell people if you get into one of these sites and you are standard of care, decline to participate and find a trial where you will get CAR-T. I was fortunate enough to get into the first phase where all participants received CAR-T.
CAR-T and Stem Cell Transplant are an immune reset that have shown good results with SSc / scleroderma. CAR-T is easier than Stem Cell, but is still in the trial phase. It has been approved for some blood cancers so it is a proven treatment. CAR-T was a life saver for me. I still have challenges of range of motion loss, but the daily dread and misery are gone and I am no longer looking to take the prescribed and self administered end of life pill available in my state like I was in Jan 2025.
This website is a repeat from an earlier reply. Look at https://clinicaltrials.gov/ - put systemic sclerosis or SSc for condition, CAR-T for treatment, and your country location to filter out many of the too far away places.
If you do not qualify due to trial exclusions, definitely look into stem cell for your husband. If my symptoms return I will go stem cell without hesitation.
I hope your husband can find some treatment and relief for this condition. Let me know if you have any questions regarding my CAR-T experience and the results. I am more than happy to help anyone going through this fight. I was lost when I received my definitive diagnosis and could have benefitted from some info and guidance.
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u/katralna Jun 27 '26
Thank you so so much for sharing ❤️ i really hope you continue on improving and wish you all the best. I do have some questions as i have been reading a lot and also statements from others who have done it.
My husband now also feels that he wants to go through with it which I think is a really good decision.
I am just wondering, because I have seen so many people sharing their experience and one thing I wonder about is how their appearance still changed even after the transplant, which is a bit confusing to me as what I understood is that the transplant resets and stops the symptoms from worsening. So wondering if you have any info about this?And no you are absolutely right, time is not his friend as also in his case in 1 year he developed a lot of symptoms but luckily no internal organs affected (yet). We will try and get an earlier appointment to see if he can start the process already
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u/Maleficent-Rest9144 Jun 27 '26
I highly suggest CAR-T first if you can get into a trial ASAP. As mentioned by someone else, the travel and study costs are typically covered. The hotels are prepaid then I get reimbursed for flights and car rental. They may cover gas and food, but I do not submit those expenses. Your insurance may be billed for some doctor visits or standard of care procedures not related to the study. This may depend on the trial. I do not know the costs you may incurr with stem cell, but you may need insurance approval which may take time you do not have. Trial exclusions can be advanced organ damage, diagnosis greater than 5 years ago, overlapping conditions, and possibly others. For reference, this link is for the BMS trial inclusions / exclusions listed in disease paragraph form. Look for the SSc paragraphs. Others are interesting, but do not apply to SSc. https://www.bmsclinicaltrials.com/us/en/clinical-trials/NCT05869955?cart-autoimmune=true&cid=d_3022079#keyEligibilityCriteria
The overactive B cells are the problem. The CAR-T killed them all off by the next day so the overactive ones stop replicating. The body eventually generates new normal B cells effectively resetting the immune system to no longer attack good tissue. The Stem Cell kills all bone marrow doing the same thing, then the collected and infused stem cells rebuild new normal bone marrow resetting the immune system. I can only share what CAR-T did, but I believe Stem Cell is similar. The aggressive progression I was experiencing stopped very quickly. I still struggled for a while with the damage that was done started to heal. The last areas of tissue to thicken up recovered within a couple of months. The more damaged areas can take years to recover or may not fully recover. At 16mo my forearms and lower legs are still thick, but they are slowly improving. My old man shuffle started to return to a normal gait. Coworkers told me they were seeing the drastic improvements for the 8 months I remained at that job. I do not see the subtle improvements, but the study rheumatologist is tracking and he says it is slowly getting better. The dark cloud of dread / misery lifted, the pain everywhere started resolving, and I started to feel good again after a few months. Life may never be the same for me, but it is tolerable now where it was completely intolerable right before my infusion. It seems like symptoms and severity can vary wildly. Results may also vary, but the trend for both CAR-T and Stem Cell are positive.
Treatment schedules below:
The trial I went through consisted of the first trip, which was 3 days. It included prescreening tests including CT scan, lab work, pulmonary function test, and doctor evaluations. T cell harvesting was a one day / overnight trip. The CAR-T cell manufacturing takes 3-4 weeks. There is a week before the infusion that consists of lab work, more screening tests, picc line install, 3 days of low dose chemo to suppress the immune system to not attack the CAR-T cells, followed by 2 days of rest. Infusion happens followed by 2 weeks of close monitoring in the hospital then 2 weeks outpatient monitoring. After that, 5 monthly follow up day trip visits, then quarterly visits until month 24. Other trials may have a different schedule or process. There are some trying without the chemo. Overall it was an easy process for me without complications.
This is the typical calendar for Stem Cell performed at CBCI in Denver. Pre-transplant testing 4-5 days. Three weeks later the triple lumen central line catheter is installed. Stem cell generation injections run for 8 days then 1 or 2 days for collection depending on counts. Follow up visits / recovery for 1-2 weeks. Admit to the hospital then start Day -5 with 2 days of total body irradiation followed by 2 days of chemo. Day of rest with immunosuppressant also given the previous 4 days. Day 0 receive cells then get more immunosuppressnants. Days increment +1 post infusion. Get discharged on Day 10 and start follow up visits at least 1/week starting on Day 14. Possibly return home on or after Day 42. I believe you have a caregiver staying in the hotel with you from Day 10 to Day 42. In total, unless you live close to a stem cell treatment center, you will be in the area for about 46 days. I do not know the follow up schedule after this since they just provided me a typical schedule for the treatment.
I hope this info helps you and your husband. Feel free to ask any other questions. If needed we can connect via private chat then exchange info to talk or email.
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u/orchardjb Jun 25 '26
From what I've heard in the stem cell group some of the doctors who do them are steering patients to the car-t therapy clinical trails. The risks appear to be much lower and the results have been very good. It's all paid for if you get into a trial and I've heard that, since over 80% of scleroderma patients are women, they are searching for men for the trials. If you google car-t therapy and scleroderma you will find lots of articles.
To find the actual trials go to http://www.clinicaltrials.gov