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Anyone using Tysabri who has SPMS

Im thinking of trying to get Tysabri as I have secondary Progressive MS and I have gone downhill a lot in the last year - from walking badly, to having to use a wheelchair most of the time now. Or . . . . . does anyone have any other ideas about drugs or therapies for this stage of this orrible condition. Jude.

Hi Jude!

I was given the impression that Tysabri was only suitable for RRMS, not ‘progressive’ MS ?! (…part of the reason for me declining this drug last year was that no-one was able to persuade me it was proven to help SPMS.)

Of course, new information gets discovered all the time, so maybe there’s been a re-think on this now?

Sadly, there doesn’t seem to be much in the way of drug treatments to address progressive MS at the moment, …but I’d love to be proved wrong!

(Not been recommended anything by my GP, MS Nurse or Neuro.)

I’m sure other (perhaps better) advice will be offered shortly.

Best regards,

Dom

I know they’re doing clinical trials of Tysabri for people with SPMS, organised by Imperial College. Don’t know whether they’re still recruiting or whether you could get Tysabri on strength of this. I know you may be able to get a second opinion from a specialist in SPMS, if your GP will play ball - can let you have some names if you’re interested. Depends which hospitals you can access.