16 Months

[Just a small town girl]

I've been on Gilenya for 16 months and so far so good. I haven't had any major side effects to date and on a daily basis, I can forget that I have MS. For me, this drug has been great... with a few minor hiccups.

Neuro's office called this morning to let me know that once again my lymphocyte count is too low. Time to retest again in 2 weeks. I know this song and dance well enough that it no longer scares me. Either my body will re-adjust (like it's done 2 times previously) or I'll push my neuro for Campath.

I'm very sorry for the people who died while on Gilenya. It'll be good to know one way or another whether G caused the deaths or whether it's just a case where people died while taking a drug and it wasn't related. Even if it turns out the drug caused those deaths, there's no way that will make me switch. The drug has worked well for me and I haven't had any heart issues whatsoever to date.

Just my mindless thoughts for what they're worth.

[Cindarelly]

Sorry to hear this, wish you all the best. Hoping they come back up.

[Moosette]

sorry to hear that your lymphocyte count is low small town girl, but glad to know that it seems to be something that doesn't become too big of an issue for you before I actually signed up for MS world I would read your posts about Gilenya and appreciated all of the feedback and updates you would and still do provide..I was getting ready to start my first dose back then and it was nice to hear all of the mostly positive things you would have to say about Gilenya...happy for you that the drug continues to work well for ya! I am almost at a year and have minimal issues as well...my big MRI to see if this drug truly is working for me is in April so keeping fingers crossed for good news, I really hope so because not so much feeling like having to start all over with some new drug anyway, best of luck to you and keep us posted on how you are doing

[kirbylynn]

I have been on Gilenya for around 4 months now. My face gets flushed sometimes after I take my daily dose. It doesn't happen as much now as it did for the first couple months on G. Sometimes after I eat certain foods I will have pain near my heart area. Luckily it always passes quickly. I do get tired easily but I don't blame G for that. I was fatigued way before starting G. I've never chatted with anyone who is also taking this medicine, except the for the woman that came to the Gilenya function that I went to right before I started taking G. I see my doctor next week and I'm going to mention that I'm still getting a flushed face occasionally after taking G. I was dx'd in 2008 and never took any MS drugs prior to G.
Kirbylynn