Last reply 1 year ago
HSCT?

Hi peeps. So I was going through the news today and noticed that stem cell transplant therapy for multiple sclerosis started in my country yesterday. I really don’t know anything too deeply about this treatment, so I was wondering if anyone here has any direct /indirect connection to it and did you guys hear about any positive results. Just curious.

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lucyh
1 year ago

Hi, this topic has been posted on before: https://shift.ms/forums/topic/lemtrada-or-hsct I hope this helps (I know little about it, although a BBC Panorama programme showed promising results….although I’ve heard it is a tough and risky treatment which was not highlighted) Take care xx


koffeelover
1 year ago

Yes @lucyh, I was very concerned at the way they skated over the very real dangers of this treatment. It’s very interesting, and each to their own – but given that MS is rarely fatal, stem cell treatment is too much of a risk for me!!


abhishiv90
1 year ago

Thanks a lot for the link and information. So it’s as dangerous as I thought it might be. I did read that it’s a tough procedure. But I guess tough =dangerous in the end. I’ll just wait and watch how things play out. I’m pretty stable currently anyway.

the procedure has actually been evolving pretty quickly over the past years and its gotten quite a bit safer now then before from the numbers I read. Watching on things go and continuing to time the trend might be the safest bet.


quillmama
1 year ago

My MS Support group talked about it during one session. One of the members knew two people who had it done. One got excellent results -was able to walk again, but the other died. We all decided we would not try it (at least at this stage of development) unless we had reached the point where we felt we had nothing to lose.


abhishiv90
1 year ago

@quillmama

For real? Wow, that’s not something that I should be very interested in right now. Again, thanks for the pointers. Stay awesome!


knotty
1 year ago

Hi all for more info see my post https://shift.ms/forums/topic/bbc-incredible-medicine-steve-storey

It features an update from Steven Storey who was the man featured on Panorama 12 months ago and gives us a little more insight and update. Caroline Wyatt has also been featured widely on her recent treatment in Mexico.

I’m with the masses – I still think it is too early to say whether this high-risk treatment is worth the risk, (unless the personal condition warrants it) and we are still not truly clear on what is the longer term outcome. Some countries (like Canada) have trialled HSCT over 15 years ago and there are updates in the recent press on continued success but I would still like to hold out for other options that are less risky.

The criteria for NHS selection seems to be not clear too -and to pay £48,000 to go overseas rather than have it on the NHS seems to be another obstacle for most.

If it costs £30,000 a yr to look after each MS suffer on the NHS, then it makes sense to me that they research this treatment more thoroughly and fast track it once they can guarantee better safety.

Knotty xx


bobbi_dews
1 year ago

Hi all, I’ve actually had this procedure done…

I am currently 2 years post treatment and feel better than ever. In saying this I have RRMS and was 18 when I underwent the treatment. As for relapses I haven’t experienced anything since pre treatment and only have minor symptoms periodically (optic neuritis and numbness).

The whole point of HSCT treatment is to stop the progression of the disease.

If you have any questions feel free to message me!

Bobbi 🙂


wintersg
1 year ago

I attended the Hallamshire Hospital in Sheffield recently to see if I can have HSCT. I’ve had MS
for a few years but my condition has deteriorated. I was told the treatment is more successful in younger
patients (I’m 55+) but if a new MRI scan shows changes they’ll give it a go. I think the NHS offers it
at 3 UK Hospitals Hallamshire, Kings College London and the Hammersmith, London.

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