Forum

Tysabri to Fingolimod

Hi everyone

Hope you all had a lovely weekend.

I recieved a call from my neuro on Friday. My titre level for the JC virus has increased somewhat and I have been advised (not told to) to ditch the tysabri. I know some people ignore the levels and some dont even want to know (i wish i didnt) - but I do now know and I have made the decision to start Fingolimod (dont even know if I am spelling that correctly).

So I wondered what peoples experiences are…I have tried to search as I know there will be info on here somewhere - but I cannot find it (problem lies between keyboard and chair I am sure).

All I know so far is that I need an MRI a lumber puncture (dodged that bullet up until now) and some blood work. I gather you are actually admitted to hospital to start taking this table?

Any thoughts greatly recieved (on fingolimod, not the decision to swap treatments)

Thanks so much in advance.

xxx

Hi Hayley

I asked about fingolimod (Gilenya) before I switched to it from Rebif last year and had a fantastic response:-

http://www.mssociety.org.uk/forum/everyday-living/anyone-else-fingolimod

There is also a Facebook page which is a closed group called something like Gilenya (Fingolimod) Users Support Group. I can’t post the link at the moment because I’m at work and Facebook is banned (boo hoo) at school, even for staff.

I’ve now been on it for 8 months and I feel great. I recently switched to taking it at night instead of in the morning (as I had read that others found it contributed to their fatigue) and it has made a difference. My legs now feel stronger and my walking has improved just from making the switch. It took me about a week to get used to taking it at night and I had a few nights’ of disturbed sleep but that soon settled and I’m glad I switched. I’m also much less heat intolerant and I even feel the cold in winter now so that’s a novelty! Apart from that, no side effects and no needles!

Tracey x

Thanks Tracey!! Just going to make a cuppa and read all the info in your link!

I also have found, and requested to be a part of the FB group. FB is also banned on our works computers but I am part of the secret WIFI club so can get it on my phone!

Thanks again (I may be back with questions so you may tell me to poke off if i annoy!!!)xx

You’re welcome. I don’t mind you asking questions - I may not have all the answers though ! I’m sure some of the other Gilenya users will be along later with some more information for you.

Tracey x

Try this link too

Have people had improvements in symptoms when they changed from Tysabri to Fingolimod?