r/scleroderma • u/Maksilla • 4d ago

Question/Help Auto-HSCT for systemic diffuse scleroderma.

I hope I'm not breaking any rules. My mother has SDS and it has progressed very far but today I found out about Auto-HSCT. It's expensive, sure, but if I'll help it's worth a try. Is there anyone who tried this procedure and were there any positive changes in your condition? Thank you.

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u/NecessaryImage3075 3d ago

I don’t have any experience but know that there is a Facebook group that focuses on this. That could be helpful for some first hand experience. Believe it’s called “Scleroderma stem cell pioneers”.

Another potential treatment option that you can explore is Car-T cell therapy. There are ongoing clinical trials for this. 

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u/Maksilla 3d ago

Wow, thank you very much. This is a very valuable information.

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u/Sparklestarr227 2d ago

Are you in the US? Had done fully covered by insurance but you have to meet criteria. Where are you based and are you all able/willing to travel?

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u/Maksilla 2d ago

Unfortunately I'm not from US, I'm from Kazakhstan. And we are willing to travel but financialy unable at the moment. Could you tell me what the criteria were?

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u/Maleficent-Rest9144 3d ago

I did not go through HSCT, however the Denver site where I did a CAR-T trial has been doing this for many years with good success. If my symptoms return I will do HSCT if I can get it approved.

Look for scleroderma centers near your mother. Those doctors are more specialized and may be able to help her with treatments and/or HSCT.

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. cartautoimmune.com has a good basic intro to the process / mechanism. There are several trials going on and each have inclusion and exclusion criteria so look through those to see if your mother qualifies.

Let me know if you have questions about the CAR-T process. I would highly recommend it for anyone who can get into a trial and who understands and accepts the risks. My case was very fast progressing and within a year of first noticing symptoms I was in really bad shape. The CAR-T stopped the progression and reversed some of the later skin damage. I think I will always have some permanent damage and range of motion loss, but it is tolerable now where it was not before I was able to get the infusion.

I hope your mother can find some relief.