MS: Hematopoietic stem cell transplant vs. Lemtrada; support/info group

May 9, 2016 4:26 PM

Friend has multiple sclerosis (MS), recently a lot worse. She's deciding between treatments: Lemtrada, or a hematopoietic stem cell transplant at the Clinica Ruiz in Mexico (since it's incredibly expensive and doing it abroad is 1/3 the cost of getting it done in the US). Anybody have research, info, or personal experience with these treatments or this clinic? Do you know any really good MS support/info groups?
posted by LobsterMitten to Health & Fitness (6 answers total)

Has she looked into clinical trials of HSCT? For example, this one, which is currently recruiting.
posted by un petit cadeau at 5:13 PM on May 9, 2016

As far as support groups: where is your friend located? If there's an MS Society chapter where she is, that's a great place to start; if not, the closest Society chapter should be able to point her in the direction of some good groups.

Feel free to memail me if you want more specifics; I'm pretty involved with the Society (child of a person who had MS) and am happy to help in any way I can.
posted by pdb at 5:39 PM on May 9, 2016

The wonderful Wheelchair Kamikaze discusses Lemtrada here and HSCT here. I've always liked Kamikaze's reporting on MS research. It's a good starting point but clearly not all there is to know. I wish your friend the best of luck and a speedy extraction from the rock and a hard place they currently find themselves between.
posted by firstdrop at 5:41 PM on May 9, 2016

This Facebook group is formed by former and future patients or people interested in the HSCT procedure at the Ruiz Clinic: https://www.facebook.com/groups/mexicohsct/.
posted by TheGoodBlood at 5:41 PM on May 9, 2016

i don't know that much about ms (although i have it myself), but this question surprised me, because the two treatments seem quite different. one (lemtrada) is a recognised, fairly standard solution, and the other is (i thought) still speculative. i'm surprised your friend's doctor doesn't have an opinion (i know last time i talked to mine she was pretty negative on stem cells). i would have expected to go with the lemtrada as it's more of a known quantity, with the stem cell as another line of backup if necessary.

also, for me, the support of my doctor is critical. i live in chile and often wonder why more americans don't come here for treatment, so i can understand going to mexico. but what about follow-up care? that would be a big concern for me - i'd only want to go somewhere else if they had a good relationship with my existing doctor.

BUT, as i said, i am no expert, and i know how terrifying this shitty disease can be (even if i am one of the luckier ones, so far). so please wish her luck and treat this comment as only the vaguest of opinions.
posted by andrewcooke at 4:32 AM on May 10, 2016

Response by poster: Thank you all! Answering questions -
-She's in the Washington DC area

-She looked into the clinical trials but hasn't been able to get into one, as they have restrictive criteria for what kind of treatments you've tried and for how long

-She is working with her doctor. I'm just casting a wider net to see if anyone here knows anything or can offer other info or leads
posted by LobsterMitten at 7:50 AM on May 10, 2016 [1 favorite]