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@lemtrada-uk 

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lemtrada-uk

Tysabri > Lemtrada > Ocrevus… now what? Stem cells?

Hi everyone. Just very worried. I have Relapse Remitting MS. I have tried a few dmd’s (I’ve had tysabri , lemtrada & now ocrevus.) Initially I tend to be ok. But then I have had a big relapse on them. I’m just wondering what if history repeats itself. Where do I go to after having ocrevus? I asked my neuro this question a few months ago. The response was that he would start me on nhs stem cell therapy. Whilst I am obviously happy to hear that there are drugs/treatment options open for me, this conversation raised more questions. Are stem cells safe? Has anyone had this treatment and would you be happy to share please? What (if any) treatment alternatives are there (other than stem cells) considering I have failed on a few now. I am scared about just being left without a nhs treatment available, & deteriorating without recourse to appropriate treatment. I am very frightened about what may happen to me. I don’t want to go down without a fight.
Huddersfield, United Kingdom
2
@GillM
@GillM
 

Hiya I’m sorry I don't have any advice to offer as I am not on any treatment cure tky but I couldn't scroll without replying. I just wanted to wish you well with your next treatment, which I read they will be able to offer via injection rather than infusion in the near future. There are new treatments being made available all the time and my hope for you is that Ocrevus is the perfect treatment. Sending lots of love and support 💕🫶

@mellowmedusa
@mellowmedusa
 

Your neurologist is talking about autologous stem cell transplantation - very basically, your bone marrow is stimulated to produce more stem cells, you’re given chemo to “wipe out” your immune system and then given the stem cells back to reboot your immune system. It’s a highly effective treatment (similar effectiveness or possibly more to tysabri/ocrevus). Of course it has side effects, but it sounds like it’s the next step as you’ve failed the big three of tysabri, lemtrada and ocrevus. If you look at the MS society pages on HSCT, that’s a good start. The AIMS charity is supposed to be good and will talk you through the process and put you in touch with people that have undergone the process.