03-26-2011, 01:21 AM #1Registered Member
- Join Date
- Mar 2011
- United States
Okay so I have recently been diagnosed with MS. The neuro wants to put me on rebif which I just read is an injection. Yikes. This nurse who works for MS lines told me there is a new medication out called gilenya which you can taken orally. Anyone used this or have any ideas about this? Is it imperative that I be on some type of medication? I wish I didnt have to be . . .
03-26-2011, 02:48 AM #2Registered Member
- Join Date
- Apr 2009
It isn't imperative that you are on the medication. There are plenty of people that don't take them, and I am sure they will speak up.
My Mom has had MS for years, and I watched her decline quickly without meds. Then I watched her disease level off when she started meds.
I started them immediately, and I am glad I did.
03-26-2011, 03:23 AM #3
03-26-2011, 11:19 PM #4
JackJackson is right, you dont HAVE to be on meds.....but I would if I were you. Remember, you can't go back in time later if you aren't happy with your MS.
I was diagnosed June 30, 2010 a day I will never forget.
Long story short:
Avonex for 7 weeks-stopped because I couldn't deal with the long IM needle
Betaseron for 2 months, had to stop because my hair was falling out....A LOT! After stopping the Betaseron my hair stopped falling out Thank God. Otherwise I would have been glad to stay on Betaseron, it has the smallest needle and you dont have to keep it in the fridge.
However since my hair did start falling out I had to make a change. Neuro offered Gilenya since my MS was rather active, most likely because I was jumping medications and not staying on one long enough for any length of time.
With that said...I LOVE Gilenya!!! No pre-medicating, no red sore spots, no flu symptoms!!! Just the fear of the unknown that comes with a new medication.
Some neuros are giving this as a first line drug and some are not. That is something you have to discuss with your doc and then see how your insurance will work with it.
For me, if I were diagnosed right now, knowing what I know, I would take Gilenya in a second.
MS Does Not Define Me.....My Love of Tea Does! LOL!
03-27-2011, 12:26 AM #5Registered Member
- Join Date
- Dec 2010
I'm one of those people who got diagnosed shortly after gilenya got approved. It's the first and only drug I've ever been on. I've had a very mild course so far paired with a mild MRI that was still definitive of MS.
My neuro threw out Gilenya as an option and I jumped on it because it's just a pill and it's got a 50% higher efficacy rate than Avonex.
I love this drug. On a daily basis, I don't have any side effects. I've had a few issues (liver enzyme level - resolved itself, too low lymphocyte count - we're working on it), but I'd still make the same decision to take Gilenya with the experience that I've had so far.
Keep us posted on how things go.