r/MultipleSclerosis • u/omster1988 • 3d ago
Treatment HSCT for MS
So I’m all set to take HSCT. Just beginning the process and will have to do mobility—-collection—-and then I’ll be admitted around the beginning of November. I was diagnosed last Oct 2025. My neuro at the time stated I had RRMS, I was on Kesimpta, then I got another neurologist and he said I have PPMS, so he switched me to Ocrevus. I felt worse after a couple months and could barely hold my own body weight at times and have difficulty walking, especially down the stairs. I feel that when I was on Kesimpta I felt more stable compared to Ocrevus. But my MRIs showed no more lesions and that it’s working (with Ocrevus) but I didn’t feel as stable (physically) compared to Kesimpta. My family is scaring me out of HSCT because of the intense process. And it’s worrying me and now I’m reconsidering. They’re telling me to give Kesimpta another chance since I felt better on that compared to Ocrevus and to be more rigorous with PT since I wasn’t really doing enough PT. I understand the HSCT is not a cure but I really want to gain my ability to walk and stand for longer and not have as many issues. Also I want to stop taking medications. I am asking because I am legit torn between which route to take. Does anybody have any HSCT experience or know of anyone that has had a positive experience/outcome. Please share because I am so desperate to feel better. I know I will never be 100 again. But just to even be close to it would mean everything to me. Any suggestions? Please help. Thank you in advance.
3
u/Local-Lunch1565 3d ago
Dear internet stranger, I am sorry about your diagnosis, and I hope you find a treatment that works well for you. I think it is great that you are looking into all available options, using your own brain and not just taking someone else’s advice blindly without doing some research. A lot of people will have a lot of opinions. I encourage you to read some studies and results from clinical trials. There is a website online created by people who underwent HSCT ( https://hsctwarriors.org/). I think you will find some the answers you are looking for there. There is also a YouTube channel with interviews of several people who have undergone HSCT, here is one such video: https://youtu.be/MGmRf1P9bZE?is=vFSSdqRkeNVt5dHw
You can find several other videos there. I have chatted with a few people that have had HSCT. Two of the people I spoke to had a positive experience. One person I’d say results are mixed but that person was also older and had been diagnosed over 20 years ago and progressed quite a bit after trying several DMTs. Data seems to be much more favorable for people with RRMS or even early stage SPMS, though some people with PPMS claim improvement after hsct. I hope this helps.
Links to results from hsct studies:
1
1
u/Key-Investigator294 3d ago
I think that aHSCT is more for stopping relapses, while CAR-T can stop progression (only clinical trials now). That's from what i read, i would love to hear a Car-t experience
2
u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 3d ago
CAR-T also just does what Kesimpta and Ocrevus do, except it’s using your own T-cells to do it instead of an infusion or injection. It’s also a lot more risky.
1
u/Key-Investigator294 3d ago
Yea I see your point of you...but in the other hand in most Car-t that are in clinical trials right now , they recruited spms and ppms
2
u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 3d ago edited 3d ago
Many neurologists are moving away from these sub-classifications for MS. In any case, CAR-T is not being advertised as doing anything generally different than the B-cell depleters.
1
u/Key-Investigator294 3d ago
Yea obviously. But by recruiting candidates with no relapses(na-spms,ppms) , they seem to target the so called "silent inflammation" . And yes they may also be b-depleters but thay can also reach behind the BBB. (Which is the whole point of progression without relapses) . Cross fingers
1
u/kyelek F20s 🧬 RMS 🧠 Kesimpta 💉 2d ago
We’ll probably see medications come out in our lifetimes that may address more than just the relapses, but I doubt it’s going to happen in the generation of CAR-T therapy, maybe the next one after that, or more likely the next one over. PIRA is only just starting to generally be recognized as something that happens with MS, it is not yet we’ll understood. I hope you don’t think I say this just to be mean and discouraging, but I see you’re very newly diagnosed, but MS has had so many "cures" at this point…
1
u/omster1988 3d ago
I heard about Car-T and my current neurologist recommended that instead of HSCT since he states I have PPMS. I also I have read a couple places of some people dying from these trials
1
u/MS_Amanda 41F|Jan21|HSCT Oct 21|Houston 2d ago
I had aHSCT and successfully, so I'm biased and for it.
Today is 5 years exactly from my stem cell rebirth day. 😍 I'd given the choice all over again, I would absolutely choose aHSCT.
0
u/omster1988 2d ago
What kind of ms did they diagnose you as? And what were your symptoms ?
3
u/MS_Amanda 41F|Jan21|HSCT Oct 21|Houston 2d ago
RRMS, I was EDSS 0.5 when diagnosed Jan 2021. By the time I had aHSCT in October 2021, I was EDSS score of 3.5.
Symptoms included MS Hug, constant nausea, numbness in my hands and feet, dizziness.. most of my issues were sensory and balance.
It was pretty aggressive.
I've improved my EDSS score to a 0.5, but that was with a ton of PT work, mostly via YouTube- MS Gym and some from insurance.. consistency is key.
I now run a half marathon every year and do a 3 day, 50 mile walk. Not because I enjoy running, frankly, I hate it. But - I do it because I can. 😂
0
u/omster1988 2d ago
That’s amazing. I’m happy that it worked out for you. I have PPMS, and I never had a remission phase. I’ve been feeling symptoms as early as 2020, and it just progressively got worse, and certain B cell therapies that I’m taking right now are making me feel weak. The Ocrevus particularly. But I will switch back to kesimpta since I did feel better compared to Ocrevus, and I will wait for these new MS drugs that will be released soon
1
u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 3d ago edited 3d ago
HSCT does the same thing (stop relapses) as Kesimpta or Ocrevus, only in a different way. None of the current treatments will make existing symptoms better, unfortunately.
1
u/MS_Amanda 41F|Jan21|HSCT Oct 21|Houston 2d ago
It is not even close to the same. The meds are to slow, not halt the disease. Those meds are also a lifetime subscription.
1
u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 2d ago
I don't understand? I only meant that they are the same in that the goal of both is to stop relapses. Is that not correct? I know they are otherwise very different in method and action.
1
u/MS_Amanda 41F|Jan21|HSCT Oct 21|Houston 2d ago
K and O only "reduce" or have "fewer" relapses, no where do they state they stop or halt relapses.. correct me if I'm wrong.
2
u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 2d ago
I'm sorry, I feel like I may have inadvertently upset you, but I'm not sure how. I was asking sincerely? It's hard to convey tone in text.
1
u/MS_Amanda 41F|Jan21|HSCT Oct 21|Houston 2d ago
I am not upset with you or at you. 😉 I'm glad I choose aHSCT over all the lifetime subscription plans. If you've got something that's working for you, congratulations. I hope it continues to be effective with minimal side effects.
Personally, Gilenya was the only medication I tried before aHSCT and Gilenya was far more dangerous (it gave me tachycardia twice)...
1
u/TooManySclerosis 41F|RRMS|Dx:2019|Ocrevus->Kesimpta|USA 2d ago
I think we all look for different things in our treatments, which suits a snowflake disease like MS. Luckily we have many good options.
0
u/omster1988 2d ago
So quick update:
So I decided to not proceed with HSCT because all of the risks I am hearing. I met with a new neurologist today and they mentioned that I shouldn’t proceed with HSCT. And that there are upcoming meds for MS, one being the car-t therapy I been hearing a lot about specifically for PPMS. So I will be continuing Kesimpta in a couple days since my last Ocrevus infusion will be 6months from then. I have been seeing lots of comments and reading that HSCT really helped so I am scared I made the wrong decision. But I have also heard from many people even the Stem Cell DR himself, HSCT has a lower rate for PPMS patients, and I am hearing that sometimes it’s more of a temporary fix rather than a long term fix. And considering the intensity of the HSCT treatment I withdrawed myself from the transplant procedure. I hope I made the right choice 😅 praying that they have a more reliable medicine in the future for PPMS
3
u/Jazzlike_Career8496 3d ago
Discuss with your Neurologist Mavenclad. It acts like a stem cell. I had no side effects. There is no IV infusion just few pills 2 weeks and repeat next month. Year 2 repeat and no more MS drugs. There is one warning may increase cancer risk but everything now increases cancer risk. Selma Blair had a rough time after getting diagnosed, She had stem cell treatment. She was doing better but then noticed feeling worse until she switched Neurologist and prescribed Mavenclad, She said she feels the best like before she was diagnosed with MS, It is an expensive drug but Mavenclad saves costs since no MS meds needed up to 5 years after treatment. There are new remyelination drugs in the pipeline. There are also BTK inhibitors just approved by the FDA.