danrb80 21/05/17
Last reply 9 months ago
What next?

I have finished Tecfidera due to more infections and intifering with work. I have been on Copaxone, Rebif, gilenya and Techfidera. Running out of options now

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9 months ago

Jcv positive or negative?

9 months ago

Hi @danrb80 I’m PPMS so no treatment – yet! But on tonight’s NEWS Beeb1 there was talk of anti-inflamatories helping ms – stopping inflammation of the brain….if I heard right then that might be worth a try.
Seems there’s a lot of original thought about treatment at the moment……fingers crossed. Maybe you could try catchup news at ten..

9 months ago

I don’t know….maybe lemtrada….can i ask why you stopped gilenya?….xx

9 months ago

I stopped gilenya as I was like a zombie, which does work with my full time job 😞

I am unsure about Jc pos or neg as never had to be tested 😢

Just stuck on no meds so watch this space

9 months ago

Hi @danrb80 what about tysabri, the only problem would be the JCV test first and then having to go to hospital every four weeks as its infusion only.

9 months ago

Hi unfortunately I cannot get Tysarbi as I have to have another relapse to get it. I want it as it would fit well with work, but alas I cannot have it😞

9 months ago

@danrb80 , it seems that the only reason you can’t be considered for Tysabri is a conservative Neuro, who is a stickler for procedure.

You need to argue your corner on this one. Waiting for another relapse could be the relapse which starts a disability, which prevents you from working.

Unless there is a valid medical reason which precludes the consideration of Tysabri, you need to be assertive in your demands, but always polite.

9 months ago

Zinbryta I’m starting on this in few weeks time . In the same position as yourself

9 months ago

Ooh I have not heard of that one.

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