Last reply 3 months ago
How do you make the decision?

Hello,
I was diagnosed with RRMS in 2017 and have spent the last year ‘managing’ my condition. However, after my first big wobble in April, I’ve had a new MRI and lumbar puncture and my neurologist has suggested two treatment options: Mavenclad or Lemtrada. I’ve Googled and read and watched and made notes and I still can’t make the decision. I was wondering what experiences you may have had with either of these treatments? Or how you made the decisions in the first place? Any advice would be very much appreciated!
Thank you!

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stumbler
3 months ago

Hi @jodieb and welcome.

We have members, who have firsthand experience of both these treatments. You can find their previous posts by using the Forum Search function (magnifying glass, top left) and searching for “Lemtrada”, “Mavenclad” or “Cladribine” (the former name of Mavenclad).


seanachai
3 months ago

Jodie

IMHO – big drugs massive decision…

Its interesting the advice you have been given based on the duration of diagnosis, I am assuming you have lots of MRI activity… lesions but maybe not so much symptomatic?

The recommended treatments are aggressive…certainly Lemtrada

Lots of lesions, means things are active but does not have a direct relationship to symptoms… they can and don’t….

There are other options if you genuinely aggressive MS…. I would explore HSCT before touching any DMD….. alternatively explore the Coimbra Protocol… (pm me for details rather than bore the masses 🙂 )

Personally, would not touch Lemtrada, long term impacts not really understood… from an MS perspective (bearing in mind its a cancer drug)… … the science says it reduces relapses but other science says it does not change the long-term outcome of MS…. the side effects, well they is a list as long as your arm….

All I would say, is explore options outside the mind-set of your Neuro…. there are lots of choices…

to the mantra “trust me I am a doctor”….. my experience to date says .. fuck that… you need as many opinions as your wallet will buy you

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