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Gilenya, advice please if any one can help.

Hi, Please could anyone help me regarding the drug Gilenya, I have been to see my MS nurse and neuro doc today and since i was not responding to Rebif they have said that this drug would be best for me as the MS is now very aggressive, I have read up on the Internet and all the info they gave me but just wanted to see what anyone that was on it or has had it thought about it. thank for taking the time to read this and any advice would be very helpfully, Ritchie.

Hi,

I’ve been on Gilenya for nearly a year now.I’m fine on it and don’t really have any problems with it.I have had new symptoms since starting it,but they weren’t classed as proper relapses.

I catch colds more easily since taking it and went through several episodes of having very dry skin all over.I do get a lot of headaches though.I don’t know ir it’s related.

Not sure what else I can say.If you have any questions,don’t hesitate to ask.

Novartis (who make Gilenya) have a help-line as well.

I live in Switzerland btw.There are no restrictions on prescribing Gilenya here.My neuro has said that if the Gilenya doesn’t work,I can have Tysabri and that scares me more than taking Gilenya.Not that taking Gilenya scares me.Sorry that’s not worded very well,hope you understand what I mean.

Take care,Brenda x

Hi, perfect thankyou very much it’s good to get your feedback, just hope it’s the drug for me, many thanks take care Ritchie.

Hi ritchie,

I forgot to say that I was on the drug trail for Gilenya for two years.I found out last year that I had been taking the drug and not the placebo during the trail.So I’ve been taking it for nearly 3 years,except I stopped the trial,so there was a break of about 2 years inbetween.During the trial I was fine.

When you start the drug,you have a great follow up.They really take care of you.Eye tests,ECG,blood tests,neuro follow up.Also when you take the first tablet you’re monitored for 6 hours.This is standard.

Sorry,I’m waffling a bit now.Anyway good luck with your decision,Brenda x

Thanks Brenda, think I will be ringing the nurse in the morning for them to get the ball rolling so i can start asap, the sooner i get it the better it will be, thanks again Ritchie.