Starting Gilenya

Everyday living
1

Hi.

I was on Rebif injections for a year but had a significant relapse so my neurologist recommended that I start a new oral treatment called Gilenya. This treatment suppresses the immune system by lowering the amount of white blood cells and thereby reducing the attacks on the myelin sheath. The worry that I have is the increased risk and severity of common infections.

If anyone is currently taking Gilenya I’d be really interested to hear from you.

Thanks

2

Hi

I have been taking Gilenya for just over two years.

I think it is the easiest thing ever. When I started I had some chest pain and shortness of breath but that passed after the first couple of weeks.

Since I started I have had no relapses, no progression and no change in mri.

I haven’t noticed any increase in infections.

Let me know if you have any questions!

3

Where are you two from? I don’t think we can get Gilenya here (West Midlands) and am very interested to know where they are prescribing it.

4

Thanks for your replies.

I’m really pleased to hear that you (bateman) have had no relapses or incresed infections. This is very reassuring for me as well as good for you! I’ve read a lot about the risk of minor infections becoming serious or even cancer so it’s good to know that your experience has been positive.

Sewingchick; I live near Sunderland. MS Lottery at work again!

Your replies are very much appreciated.

5

thanks for starting this thread. I’m waiting to start on Gilyena in the next few weeks. Glad to know you have had a good experience on it. I’m in Cumbria by the way. They offer it here as a 3rd line treatment - I’ve “failed” on re-bif and copaxone so was offered this. Looking forward to no injections.

6

Im glad ive read this thread. I only started rebif last week but specialist advised me to go on gilenya as i have the rapid type. It took me 5 months to choose rebif so i wasnt going to change my mind at last minute. I was also worried about the side effects but reading more into it, im pretty certain im going to go onto it.

7

Hi.I was diagnosed in 2006 and took Gilenya for two years on the drug trial -when it was still called Fingolimod/FTY720.I found out afterwards that I was taking the drug and not the placebo.I stopped the trial in 2009 and had no treatment for 2 years.In this time I had a lot of small relapses that cleared up on their own,then I had a bigger relapse,so was started on Gilenya and have been taking it since September 2011. In all I’ve been taking it now for almost 4 years in total.My new neurologist,who prescribes the Gilenya said it was a shame that I stopped the trial as my lesion number in this time had doubled.Since starting Gilenya I have had new symptoms,but which weren’t classed as relapses and no new lesions.I do get colds more easily,which is a pain. I had an MRI a year ago and am having one in a few weeks again,just to check how things are.I do hope to be able to stay on this drug for a long time,touch wood.You might find this site useful:www.gilenya.com I live in Switzerland btw,but am Scottish.No restrictions on prescribing Gilenya here.Hope this helps,you can pm me if you like.Take care,Brenda.PS The computer won’t let me do paragraphs,sorry it’s messy.

8

Hi, sorry to keep asking, but ThesheriffJW, could you saw what health authority you are with?

9

Meant, could you say which health authority?

10

Im in southampton and quite fortunate to have an ms specialist at my general hospital twice a week. I cant believe there is post code lottery

11

There absolutely is. It was in the papers last week (specifically about MS treatments). I know an MSer round here who has been offered Tysabri but is positive for the JC virus and wants to have Gilenya instead and has been refused.

12

I am in Australia, there are no restrictions on gilenya or any other MS drugs here

13

There are good Gilenya users forum on the MS world site and on Facebook that might also help you

Best of luck