Hi. I have recently been diagnosed with tumefactive ms (lesions are large). My consultant wants to start me on the ‘stronger’ medications as I’ve had two episodes in 8 months. Unfortunately I am jc positive so don’t really want to start on tysabri. Other options were gilenya, copaxone or rebif ( he didn’t first suggest the last 2 until I questioned the ‘older’ drugs) Do anyone have any experience of gilenya?? It seems to have worse side effects than others. Does anyone think it’s better to start with gilenya. Or start with the CRAB medications and work my way up if needed ? Any help appreciated Thanks
Hi
I’ve been on Gilenya for nearly a year now with no side effects at all. I’ve had no relapses since starting Gilenya. I was previously on Rebif which caused flu like side effects and painful, itchy injection sites. I relapsed twice while on Rebif. Everyone is different but for me Gilenya has been a godsend.
Good luck with whatever you decide.
JZ
Thanks. I was just a bit worried about the potential cardiac side effects and liver enzymes, which I take it haven’t been a problem for you. Have you suffered with anymore infections than usual? Sorry for all the questions!
I’ve been on Gilenya since November so that’s just four months but no side effects either. I was previously on Rebif and was relapse free for 3 1/2 years but then relapsed twice last year within 3 months so the neuro felt it wasn’t working any more. It’s only early on that it lowers your heart rate which is why they monitor you closely with the very first dose which is the ‘danger’ time. After that your body gets used to it and your heart rate stabilises. You have regular blood tests with all the DMDs as they can all affect your liver which is why you are closely monitored especially in the first year.
I’ve had one cold since November and I think I have the beginnings of another one today. I caught lots of bugs when on Rebif though so haven’t noticed any real difference there.
The big bonus is popping a daily tablet as opposed to self injecting 
Tracey x
Hi I’m starting tysabri this week , but luckily I’m JC negative , but I had decided it was the one for me even if I was positive because of the results it is getting. I have spoke to a lot on it and some are positive and have been on it for years, but it is a tough personal choice. I think you are only left with Gilenya , as the other two you mentioned aren’t second line drugs I think. ( maybe wrong ) . Good luck whet ever you decide and I hope you get great results. Take care Graham x
Thanks for your replies X