Fingolimod

Everyday living
1

Hi All

Quick background - I have been diagnosed with MS for 21 yrs…I have been lucky, but last year was placed on Plegridy as more active lesions on my MRI scan and and approaching age 50. I have managed well up till now, usual problems, fatigue, odd sensations etc and a few heavy relapses. Anyway, at my last Neurology appointment my consultant said he wants me to go onto Fingolimod, daily tablet rather than an injection once every two weeks. I have been trying in vein to speak to others who have been using this drug and even went to my local MS therapy centre yesterday to see if I could speak to anyone but alas, no one there had even heard of it!!! I did the You tube clips and listened to many reports (USA version is Gelenya) but I still feel I want to speak with someone or a few people who have tried or are still taking this drug. The side effects on the internet suggest many things, as it did with Plegridy but I am feeling a bit lost as to what to do. My current DMT suits me as I feel rough for 1 day our of two weeks and it allows me to continue with my job. I fear if I start taking a daily DMT I will feel rough everyday and am not sure running the risk of that against the quality of my life now is worth it.

I would therefore really appreciate some words from anyone who is taking Fingolimod, the good and the bad…

Thanks

J

2

Hi J

I,ve been on fingolimod for some time now having had to switch from tysabri and results so far have been

good simple 1 tablet a day. The first dose will be in hospital under supervision but after that all at home,

you will undergo regular checks at hospital but nothing too intrusive.

good luck Simon

3

Hi I’ve been on fingolimod for 5 years now after copaxone, then rebif. It works really well for me, no side effects and so easy as you know, just one tablet a day. Good luck with it, but all positive results for me!

4

Hi Julie - I have been on gilenya for about two years now after having been on tysabri for about 4 years. I had to make a change but have been really pleased with the drug . Had an initial appointment where my heart was monitored for 6 hours and then just take every day - no side effects for me - they will monitor your bloods as can affect them. I find it much easier than having to attend hospital every month- good wishes Helen

5

Hi

Thank you to all who replied…it seems you have all had positive results so perhaps it’s time to put my big girl pants on and go for it…The side effects I have had with Plegridy are minimal compared to some things I have read so perhaps I am just not a side effects person.

Thanks again - I found lots of reports re Fingolmid after I posted my message but nothing like having a personal reply.

Julie