Started Gilenya Yesterday (1-3-2013)

[KO4BG]

Hello:
My wife started Gilenya yesterday after 2 1/2 mo. off Tysabri. She had to be there at 8 AM for EKG and took pill at 8:30, her heart rate was around 103 I guess nerves (mine had to be 200, I was more nervous than she was) her heart rate dropped to 70 after around 3 hours and then came back up to 74 by the 5th hour and stayed around that, the EKG at the 6 hr point was better than the first one.
To make the story shorter she had no problems yesterday, except they forgot to take blood sample and she had to go back today. She did not feel as good today, really chilly feeling, she says sorta like a flu symptoms, but still better than problems she had with Avonex and Betasaron(?) we just hope and pray that it works and the side affects are not as bad as before. She really did good with her first and second pills.
I really believe that the Tysabri was slowly killing her!!
Woody

[Brass]

I've just finished with Copaxone after 8 months as it wasn't working due to the fact i had several new lesions, I'm about to start Gilenya (providing all the tests are ok) and was wondering how long it takes to kick in. Thanks in advance!

[KO4BG]

Brass, sorry to say I don't know yet, my wife has been only been on it for 9 days (started 1/3/13) and is not doing too good so far, we are just hoping for good results.
Woody

[peatree]

Hi KO4BG,

I hope your wife is feeling better. I am recently diagnosed and my doc wants to start me on tysabri in the next couple of weeks. I'm trying to learn as much as I can. Would you share a little bit of your wife's experience with it? Thank you.

[mama292227]

Hey all, i'm on week 6 of gilenya.. so I don't know too much. But at first I actually felt worse. The past maybe two weeks I have more energy then I had before.. Although I also take provigil. But overall, I'm not feeling too bad. Some weird heart flutters, and I think I may have high blood pressure as opposed to the low it normally causes. Also I am always cold and very very emotional. I cry a lot more. I have also developed an icky acne flare. but who knows. Just thought I would put in my two cents. not sure that it is helpful, but it is what it is... take care all.

[onlyairfare]

I've been on Gilenya more than 2 months and I think I feel about the same as before, except maybe a little more tired (but I am always tired, that's why I take Provigil). Like you mama292227, now that you mention it, I think I have been more emotional, cry easier. I thought it was maybe just let down after the holidays.

A couple times during the first 2 weeks my heart rate got really slow, down to 40 - 42 when it is normally in the 70's if I am just standing or sitting around, and I felt rather dizzy. I haven't had that problem any more, though my heart rate stays in the upper 50's or low 60's unless I am exercising.

All in all, I think Gilenya is fine for me, and though I was not bothered much by the daily Copaxone shots, it is much less nuisance to take a daily pill.

[jkrau86]

I've just finished with Copaxone after 8 months as it wasn't working due to the fact i had several new lesions, I'm about to start Gilenya (providing all the tests are ok) and was wondering how long it takes to kick in. Thanks in advance!

It took roughly 2 months before you kind of feel normal, this is the only MS drug I've been on so I can't give you a comparison. I've been on in for a little over a year.