What did people think about the HSCT story that has been all over the news? I have been surprised that there were such a small number of people in the study (only 24 and one died). I want to know how the results compare with Lemtrada (and Cladribine). On this website, it says that Lemtrada reduces relapses by 50% compared to interferons and reduces disability progression by 42% compared to interferons. Whereas HSCT stopped progression and relapses - obviously better, but how much better? If anyone knows of more absolute figures for Lemtrada, could they post a link?
Cladribine stops relapses and progression for about 40% of people who have it. I don’t know what happens to the rest.
I was reading this on the CBC news website:
Yes, it looks like the best yet …
One sentence in the Lancet paper is stressed:
“all efforts must be taken to avoid stem cell tourism.”
In other words, just because someone in Canada has got the procedure about right, is no reason to go rushing off to Mosco, or Mumbai, or Ulan Bator for some unverified treatment that will cost a serious amount of money.
The results do not surprise me. If HSCT could be packaged and sold as a branded treatment I’d imagine it would have been on the shelves long before now.
If Lemtrada does not work for me I will be pursuing HSCT, hopefully I will not have to go abroad but I will if needed.
Whenever I’m tempted to hope ‘the answer’ is just around the corner …there’s almost always the caveat (revealed eventually) that whatever the procedure is, it’s unlikely to be effective on anyone who’s had MS for several years already.
There was a comment this very morning that in some cases the best possible result was to halt progression.
Not much consolation to people already immobile and/or in constant pain.
In a disease where the progression and symptoms are so varied and diverse from one person to the next, combined with the almost endless list of ‘unknowns’ (i.e. a definitive cause; the role of genetic inheritance; interactions with environment; benefits of strong gastro-fauna; the actual action of DMDs; optimal diet and behaviour;) why limit the extent of a test group?
Certainly studies of adequate scale need to be completed before any new therapies are publicly available (mainly to provide due diligence to then help avoid subsequent litigation)… but my annual MRIs are not for my benefit. The experiment continues.
Why limit the number of participants by presuming ‘such and such a therapy’ would hold no benefit?
I was just reading yesterday’s Guardian front page story on this. They say for only 5 to 10% of PWMS are the benefits of the treatment likely to outweigh the risks. One of the participants in the trial was told she had a 1 in 10 risk of dying. She was in a wheelchair, unable to dress herself or cut up her own food at that point - now able to ski and kayak.
The most interesting thing about this story is that it pretty much proves that MS is a disease caused by the immune system - which the doctors were never certain of before.
I fancy going to Ulan Bator - just as a tourist though, not a health tourist.
Well I wouldn’t want a FaceBook group as my main source of information. The Facebook posts are going to tend to be from people with good things to report. People doing badly will tend not have the motivation to post.