Forum

Starting Fingolimod/Gilenya

Everyday living
#1

Hi All,

I have Highly Active RRMS and have been on Copaxone for 18 months, no serious side-effects. However had 3 clinically siginificant relapses in the last 12 months, my Neurologist has suggested that I move from Copaxone to Fingolimod. I go into the Cardiac Unit on Wednesday to start this off.

I am sure that I will be ok, all the same I am nervous with so many scare storeies about it around. Can the Fingolimod users of the forum give me some feedback?

  • How did your first dose go?
  • What should I expect?
  • What are your most common side effects?
  • Pro points / negative points?

This will help me adjust, I am looking forward to stopping injections, I am not looking forward to potentially a glut of new side effects.

#2

Hi

I’ve been on Fingolimod for over a year now.

My first dose went fine. An ECG before you take it (as a contrast) and then another at around 6 hours after taking it. The worst part of taking it for the first time is the boredom. It’s just sitting on the Cardiac Ward attached to a heart monitor all day!! Take a good book (if your a reader) or a friend/relative to chat to.

As for side effects, I haven’t noticed any.

The biggest Pro has to be not having to inject every Monday evening (I was on Avonex before). With Fingolimod I just take it at breakfast with all of my other Meds, so it’s just another tablet/capsule so I don’t even notice it.

I like you I was concerned about changing to Fingolimod with the heart thing etc etc, but it’s just so easy to take !!!

Good luck with the appointment (not that you’ll need it) !

Rob