Forum

Who is using Gilenya

Is there anyone who was on Copaxone and have changed to Gilenya?

I don’t think any of the Health Authorities are giving out Gilenya because it is too expensive. Ours (West Mids) is not. I might be wrong about the others or you might get a response from someone who has been on a trial.

Hi ,I’ve been on Gilenya for 6 weeks now.i live in kent.i have tried Beta interferon and had a very bad relapse.i was moved to Copaxone and had a allergic reaction to it .i was offered gilenya by my neuro in October last year and started it the last week of January. Jo x

Hi everyone

I am a newbie to the forum i am 55yrs old and live in Scotland i have rrms was diagnosed in 2009 and have been on Rebif since then.I love looking at the forum as everyone seems so friendly.My main question is there anyone out there on Gilenya as i may have to go on this as Rebif is now not working as well as it should something to do with the antibodies in my blood.I am just a bit worried about the various sideaffects it comes with.I would appreciate any help to make my decision a wee bit easier.

Annex

Hi Annie 57, I was so worried about the side effects to gilenya that it caused many sleepless nights before hand and when I went to be monitored in hospital with the first dose ,I thought I wouldn’t come out alive!! How wrong was I !! I have had minor side effects like,feeling sick,upset stomach and heartburn but they have faded after 6 weeks .the nurse who monitored my heart in hospital actually worked on the drug trial ,so I asked lots of questions.the drug has been around for years and has been used for kidney transplant patients (to help the body accept the kidney) but that was in a higher dose.so it was really interesting talking to her.in the couple of years she monitored the trial all her patients were ok …im please I was offered this oral drug .( actually could of been kidney or liver transplant) Jo x. Feel free to pm me