gilenya

[dam07147]

Hi, Is anyone on Gilenya? I understand you have to get some baselines from a few doctor, but how soon after you get them can you go on the medicine?

[cainer]

well to al,l i have been on copaxone 4  a couple years-doing ok then arm started electric shocks, felt like muscle coming off bone- so he decieded to do this gilenya-id do my research on it- but it seems to be better with the trials. so i didnt have much to lose -i do take it at night,cause it makes you a little nausous-and sleep through it!!
doing ok    lol   yeh the nurse navigators- well i always get the answering machine-before i started on it -i almost gave up- then it came through the mail- but im only talking about a month, so that wasnt bad. its suppose to be better- so???  keep in touch!!

[dam07147]

My husband has been on Betaseron, IVIG, and Tasabyri. He built up antibodies on the betaseron and tasbryi.He has to now choose from copaxone or gilenya,

[Sarahsmom46]

I've been on gilenya going on my 3rd month.  I haven't found the nurse navigators to be that helpful, sorry to say.  Novartis, the makers of gilenya have a patient pay assistance program that pays your copayment for one year.  Before you call the nurse line, I'd talk to my insurance company to be absolutely sure they will not pay.  I know there are companies out there who are not on board with this yet, so it could be a very expensive drug for you to consider if you know they are already agains paying.

If you don't mind my asking, have you been on any of the other MS drugs yet?

-Julie

[cainer]

well they have they call them nurse navigaters- theydo the searching for you-for funding- im on medicare-im only 56 but disabled- well they cant pay it- lol i sure cant-man it as much as we make in i year!!   call its support program 877-408-4974   see what they say but i do have medicare and aarp that could be why -but let us know-they are a huge company-im sure there are places that help- i was on copaxone and a fund for chronic dieases helped!   let us know

[dam07147]

Hi,

Does you insurance company pay for the gilenya? I looked it up online and my insurance company said it was not covered.

[sllowe]

Hi Dam07,

Here is the user list so far:

http://www.medhelp.org/posts/Multiple-Sclerosis/Gilenya-Users-Past-and-Present/show/1469412

Cainer - Did you add your name to this user list yet?

-Shell

[cainer]

yes what lulu said!  i started 3 weeks ago doing ok- i did blood work and eye test for macular edema.
was all i had to do then if all is ok you go on gilenya. i take it at night -makes me a little sick at stomach- but everything makes me sick!! lol  
have had side effects of being chilled- to but ok!  when you starting or are you just thinking about it?

[Lulu54]

Hi Dam, There are a number of baseline tests that should be run before you start Gilenya, including a number of blood panels, pulmonary  and cardiology tests.  None of these are difficult or lengthy to do.  You should be able to get them done quickly and once you get the ok to start, you should be able to do Gilenya immediately - which is as soon as you can be scheduled.

You have to take the first dose in the presences of medical help  and stick around for 6 hours to monitor for side effects.  If you have no problems, you can then take the pills on your own.

Are you getting ready to start or are you just exploring the Gilenya option?
Lulu