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)
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!
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.