Tysabri to Gilenya or Cladribine

Everyday living
1

Hi folks. I’ve been on Tysabri for about 5 years after suffering two attacks in a month and since then nothing. Unfortunately, I am on the high end of JC+ and no one is disputing that I have gone from 1:1000 to 1:100 chance of developing PML.

It’s like Russian Roulette and I don’t want to play any more…

I have been offered a switch to Gilenya, which I’m not that excited by due to the extra colds and flus it may cause. I have been told about Cladribine/Mavenclad but it too has side effects (as they all do).

Has anyone been in this position? What did you do? Anyone got any experiences to relate on these alternatives?

Should I perhaps carry on with the Russian Roulette, which I think my consultant would prefer?

Should I go dmd-free, get my fitness back (and immune system with it) and just carry on as I did for years before getting hit? Which I don’t think my consultant will like one little bit.

Any thoughts at all would be gratefully received at this stage, cos I’m going round in circles on this one.

Regards,
Duncan

2

I’m on tysabri over 2 years now and like you im on the high end jc+ but il stay on it until my neuro tells me to stop. Gilenya is a good drug, easy to take and no side effects.I was on it for 2 years and was sad to come off it.i had no extra colds or flu on it.Its supposed to be good for people who have to stop tysabri. It’s your choice what to do but anything that stops relapses is a good thing so pick carefully what you do

3

Hi, and sorry for the very late reply - I had to stop Tysabri after 6 wonderfull years. I had developed a JC+ also and my neurologist told me that I were to stop Tysabri and change to Gilenya. Im happy with Gilenya! I’ve been on it for 6 months and I feel fine.