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wjgregg
1 year ago

Dear @faith_grocott,

I’m really sad to hear that. I have just had my 14th infusion. I have not had a relapse since I began taking it (for rapidly advancing R.R.M.S.). I do suffer from fatigue quite badly, but I can live with that, given the alternative.

I hope things begin to improve for you soon.

Good luck, and best wishes.

Jon


stumbler
1 year ago

Hi @faith_grocott and welcome.

From your post, I read two concerns.

Primarily, you suggest a very frequent series of relapses, although I’m not sure if this is just since you’ve been on the Tysabri. It’s important to understand what is, and isn’t, a relapse. There’s a detailed explanation here :-

https://www.mstrust.org.uk/about-ms/ms-symptoms/managing-relapses

Bear in mind that MS symptoms can be emphasised by an increase in body temperature, e.g. at certain times in your cycle.

Secondly, not all Disease Modifying Therapies (DMTs) work for everybody. What works for one, won’t work for another. In that way we’re all unique.

If the Tysabri is really affecting your quality of life, then contact your medical team to consider another DMT. There are quite a few options now.


faith_grocott
1 year ago

Thank you you both so much. It’s making me feel quite down about it and being in a world of relapses for 4 months with no let up. @stumbler I started with this new relapse before I started on the drug. Thank you both again so much

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