Forum

Fingolimod

Hi

my name is Nicki, I was diagnosed with ms six years ago and I’ve basically buried my head in the sand since then. I went to see my consultant today and he has suggested that I go on Fingolimod. I have been on avonex since September 2009 and I’m worried about changing. The side effects of Fingolimod concern me but the long term prognosis looks better than it would be with avonex. I saw there were some threads on Fingolimod last year but a lot can change in a year. Does anyone have any experience or advice about what to do. I think I know what I am going to do but thought I would wsk advice first.

Thanks

Nicki

Hi Nikki

I switched from Tysabri to Fingolimod about 9 months ago. I, fortunately havent had any side effects from the tablet at all. As far as taking the drug goes, its been fine. For me personally I feel like Fingolimod is a step back treatment wise from Tysabri but I didnt really have a choice at the time. I have had 1 relapse since starting where as I hadnt had any in the near 3 years I was on Tysabri.

I think when you first read about Fingolimod it can be quite daunting - but I didnt find it as bad as it read. I felt a bit freaky about the fact you have to have your first does in hospital in case of any reactions, but that was all absolutely fine. At best it was a day off work and at worst it was boring!

I am happy to chat if I can give you any more info. No expert but I have personal experience I guess!

Good lUck

x

Hi Nicki

I’ve been on fingolimod for 19 months now and so far so good. No relapse and no side effects. I was a bit anxious about the side effects too especially the first dose as there is a history of heart disease in my family but every patient has lots of tests before starting to make sure it’s considered safe for you. In the event, the first dose was just a very long day and a good chance to catch up on some reading and watching films on my iPad while I was hooked up to the ECG machine.

I switched from Rebif after having two relapses whilst on Rebif. There were no nasty flu-type side effects with fingolimod, I did have a slight upset stomach in the first few weeks but nothing severe enough to even warrant a day off work. Best of all, taking a daily pill is soooo much better than self injecting.

Good luck

Tracey x

Hi Nikki,

I am new to this ms site but thought i would take a look as i am in the same dillema as yourself. I have been on Avonex since 2008/2009. Recent MRI scans show i have the same amount of inflammation in my brain going on for the last 4 years, my Ms nurse isnt happy as she said my Ms is active. My nurse said that i need to change my medication to Fingolimod but the side effects have scared the hell out of me! Have you started taking them yet? If so how are you getting on? Its very reassuring that elmo hasnt had any relapses or side effects. There are alot of positives about these pills and the thought of no more injections sounds great. I wont be starting mine until sept/oct when kids go back to school and i have enjoyed my holiday. Hope you are well take care Michelle