Hi I’ve had MS for 10 years and for most of that time I’ve been on Betainterferon, first I started with Avonex and for the last 5ish years I’ve been on Rebif. I had a relapse about 4 weeks ago and I had oral steroids which has put me back to ‘normal’, this relapse was the first one I’d had in 11 months. Anyway, I’ve had a letter from my Neurologist saying that he wants me to go on Fingolimod because I’ve had a relapse whilst on Rebif. Hmmmmm…well one relapse in 11 months was good going (I thought anyway) and surely no relapses is impossible?! Does anyone have any experience of Fingolimod or any pearls of wisdom they would like to share with me? Thanks, Helen x
I’m on Rebif. No relapse for 2 yrs so it is possible to go a long time without having one. As for Fingolimod - it’s your call but in one way I’d judge you’re lucky to be offered it. It is supposed to suppress relapses more effectively than rebif but as for side effects - I’m not sure. I expect others will know more. It does have the advantage of being an oral med - no injections. Good luck with making the right decision for you. R
I have been taking fingolimod for the last 11 months. During that time I have had no relapses or progression.
When I started the drug I had some chest pains but nothing came up when I went to the cardiologist (had ultrasound, stress test etc)
I have my blood checked once a month and have some elevated liver ensymes and a lowered white blood cell count (this is what the drug is meant to do)
Prior to starting Gilenya I used betaferon for a few months but didn’t like injections and wanted the most effective drug possible so I switched.
The way I think about it is that neuron loss is permanent and it is worth the risk to try and stave off as much disability as possible for as long as possible.
Oh one last thing - as yet there is no evidence that directly links the deaths to Gilenya - the EMA review is due April 20th
Sorry - one other last thing!
There is an active facebook group of Gilenya users here - Gilenya (Fingolimod) Users Support Group | Facebook
While I was on Copaxone, I had pretty much 3.5 years relapse-free with only one new lesion in that time. When I relapsed, my neuro told me that it wasn’t working for me any more and to come off it. When I started on Rebif, I asked my neuro at what point it would be working / fully “in my system”. He said 6 months - a relapse after that is considered a treatment failure.
So, if your neuro is anything like my neuro, he must reckon that you would do better on something else.
As far as I know, having a relapse whilst on an injectable DMD means you are eligible for fingolimod. The trial results show that it is more effective than the injectables, but not as good as Tysabri. The most worrying side effect to me is the macular edema which can lead to vision loss if unnoticed - but stopping fingolimod reverses the edema, so all that needs to be done is to have regular checks. The deaths that “Risk” (apt avatar) alludes to are a miniscule proportion of the people taking it. And nothing that we put in our bodies comes without risk (including food! - a friend of mine’s son nearly died from licking a spoon that had been used to stir lentil soup - an unknown allergy!).
Whether or not to switch is your choice though - your neuro can’t make you. If you’re happy on Rebif, then stick. I’m eligible for fingolimod, but Rebif is working really well for me so I’m staying put. If I relapse this year, I probably will switch though - I really don’t want my EDSS to get any worse if I can help it.
Karen x