Have you heard about HSCT? Stem cell transplants for MS?

Hematopoietic stem cell transplants use chemotherapy and your own stem cells to stop MS in it's tracks and reverse disability for many! And yet we hear so little about this.

If you have heard about this:

1) Where did you learn about it? (neurologist, MS Society, friend, etc)

2) What have you heard?

3) Would you have HSCT if it were available to you?

9 Replies

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  • Hello,

    MSAA has included information in several of its publications on this topic. In the “Ask the Doctor” column from the Winter/Spring 2015 issue of The Motivator, Dr. Burks explains that while experimental trials in stem-cell therapy (SCT) are encouraging, it is still in very early phases of study. Some people have little or no new disease activity following SCT, but others experience life-threatening adverse events.

    The “Research News” column also provides a good overview of SCT. Please refer to this issue of The Motivator at mymsaa.org/publications/mot... or go to MSAA’s MS Research Update 2016 at mymsaa.org/publications/msr... for more information.

    Thanks!

    Emily MacHenry

    Communications Coordinator at MSAA

  • I'm glad you're including information about Dr. Burt....it's actually not early at all, it's a phase 3 trial that is wrapping up. I will check your publications but I'm not familiar with "life-threatening adverse events" other than the one case in the Ottawa trial which was a different protocol. The NMSS also states all kinds of warnings about how "dangerous" this is when really stem cell transplants are the same thing as bone marrow transplants that have been done for decades for cancer. The drugs we take are more dangerous in my opinion.

  • i SO agree with you! no one dr. burt has treated w. hsct has died. everyone wishes they had it done sooner. he has treated people w. ms, ra, stiff person, etc. for years i was treated at johns hopkins and written about. i was treated aggressively and still needed more and if i had not had hsct i would be in a nursing home. recently i was part of a talk w. dr. coatzee through my counterpane. i'm on Facebook too where links to both are on my page.

  • Yes I know, I'm Ellie :) I'm looking for other avenues to educate MS patients, as it appears you are too....as NMSS isn't going to do it apparently and I'm kind of surprised MSAA also seems to be feeding this "HSCT is dangerous" thing....I was hoping maybe we could find another group to help advocate.

  • ellie! lol. guess i'm preaching to the choir. ;)

    over the years i have tried sharing in groups and i guess i'm not as persistent as you anymore.

    but to be positive there is so much more info than 3 years ago even. it is just not fair that the patient community has to find this themselves AND not be taken advantage of by other stem cell therapies.

  • I tried clicking on those links and they are broken but I will do a search. Thanks!

  • Hello Ellie!

    The links in the original comment have been updated, so they should link directly to the correct articles. If they don't please let me know.

    Thank you!

    Emily MacHenry

    Communications Coordinator at MSAA

  • Thank you this is very helpful. nes78 the HALT trial is referred to above with the 2 deaths which explains why some say 20% mortaility rate they are basing it on that study....but one died from asthma and the other died from progressing MS. Dr Burt's trial is safer being non-myeloablative with the biggest issue being developing thyroid issues...which I think most of us would gladly trade MS for a thyroid issue. :)

  • after failing multiple dmds and being in a nursing home at 35 i met w. dr. burt and was treated off study! that was three years ago and i'm only sorry i could not have done it sooner. i have a history of being on chemo on and off in combination with dmds since dg. in '01 at 23. he treats people with other ai diseases as well and it's criminal that some people get dropped by their neuros for mentioning it. my edss went from 6.5 to 3.5. i still can't work but no ms drugs and no new lesions! there are no promises but remember there have been fatalities from the dmds. i would do it again in a heartbeat and i don't use the word cure but my ms has been halted. the chemo is critical as i see other "stem cell therapies" that seem to be taking advantage of people.

    if interested my short story. happy to answer questions.

    vimeo.com/130065935

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