Hi all - Im starting on Gilenya on Monday and up till today I’ve been nothing but raring to start - I did quite a bit of research before deciding to go onto it and feel that the risk is outweighed by the benefit - still feel this. HOWEVER, stupidly and last minute been on line and have found some bad press about the way the drug is being sold and that some of the risks are being “covered up” a bit conspiracy theory wise. This wont stop me and im still postive about it - actually feel very lucky to be offered it with a great MS support team with me BUT I would like to hear from anyone on Gilenya and their experiences. Need to block out those demons before Monday. Thanks in advance for any replies x
Hi,I have been taking Gilenya since 2007 (for two years as part of the drug trail,turns out I was taking the drug and not the placebo).I chose to do the drug trail as it was my only chance of being given dmds,They weren’t going to offer me anything else (I’ve had depression in the past,which ruled out most other dmds) even though there was a 1 in 3 chance of taking the placebo.Throughout the trial I did have new symptoms,but they weren’t classed as relapses. Then I decided to stop the drug trail and had no other treatment. I didn’t see a neurologist for two years (though had countless small relapses which resolved with no treatment) until I had a relapse affecting my two arms.My new,wonderful neurologist started me on Gilenya.This was in September 2011 and I’ve been taking Gilenya ever since. I have also had new symptoms,but again they were not classed as relapses.My last MRI a few months ago didn’t show any new or enhanced lesions. Gilenya is wonderful and I hope to be able to take it for many years to come. As for side effects,my heart rate slowed with the very first tablet (that’s quite usual apparently) and has been fine since.I did get a red rash on my face and legs for a short time during the trial.I do get colds more easily.This year I have had very few symptoms.You wouldn’t know that I had MS to look at me.This site might be useful:www.gilenya.com For some reason this site won’t let me do paragraphs. Hope this helps.You can pm me if you want Good luck for tomorrow.Take care,Brenda.
Thank you Brenda for your reply. I’m on day three and the inital dose was troublefree - so far I’m very happy with it although it’s early days. Strangely in the run up I really just wanted to get on with it - anything that might keep me as I am now I want to go for but on Sunday the day before I started feeling really unnerved and anxious - I even spent 6 hours on a heart monitor watching the stats continuously which was nothing short of obsessive! Your experience of Gilenya is very encuraging It all went well on the day and my prescription was delivered today by BUPA. I am very positive about the drug and the science as to how it works seems logical to me. I know of two other people who just dont qualify but would like it, and whilst in UK it is considered a second line treatment mainly I expect because it is cost prohibitive, I imagine if it does what it claims to, expanding its use as a first line treatment would save the NHS in the long run with less patient’s relapses to manage. I imagine it will become a first line treatment in the future once its cost is driven down by competition. Best wishes.
Hi I’ve been using since February 2013 no problems so far:-)