New drugs

[Jae84]

I was Dx in. 1999 when I was 15 with rrms. I was 15 entering into highschool I went blind in my left eye. I was given the IV steroids and sent home on a taper. I didn't take any meds for years til after I had my first child. I started avonex was on that for about year then had my second child then went back on avonex then lost my insurance had to stop meds for about a year. Now I am on rebif have had at least three attacks in one year but no new lesions. Was wondering if anyone is on gileyna and if so how long and how is it doing for you I start soon and worried.

[Guitar_grrrl]

From everything I've read, Gilenya is quite effective, and has a better relapse/disability progression reduction profile than the CRABs

Good luck to you!

[PeninaD]

We almost put DD on Gilenya, so were in touch with the RNs at the pharmaceutical company. According to them, after the clearances for macular swelling, cardiac issues and chicken pox, (as well as all insurance & finance issues settled) only the very first dose is taken under supervision, with a few hours of cardiac  monitoring.  There are certain clinics that are authorized to give the first dose, and the pharmaceutical company might pay for it, as well as ship the first batch there for dispensing after you succeed with the first dose.

[SarahL2491]

It seems it depends on where you live…….I overheard my Tysabri nurse tell someone that at her facility, you have to be hooked up to an IV, heart monitor and stay overnight, every month, so check with your facility to see what you have to do……..Laura is right, there are things to be observed for, but from people I've talked to, it does vary from place to place………….wierd, should think it would be the same everywhere………….Welcome to our group, we are a chatty group but very supportive

[Lulu54]

Hi Jae, it looks like you are new here so let me first say welcome to you.  It sounds like you have been through a bit of experience with MS.  From what I know about Gilenya, I think you will have no problems and should be happy with it.

There are some precautionary tests they must do before the first dose and you must be observed for any adverse cardiac problems.   That is the big worry most people have with starting Gilenya but it has't caused any serious problem that i have heard.    There is also screening for vision, dermatology problems and chicken pox exposure.  

It appears to be a very effective drug and I imagine you will be happy to do do the injections like you did in the past.

I'm glad you found us here - this is a very smart group of people who just happen to have MS! ~Laura