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Gilenya
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JacalynB posted:
Hi. I could use some opinions here...I have been on Avonex since 1997 and it is going fine. Very fortunate about that. I was wondering if Gilenya is something I should look instead. I am not in a need to make a switch, but I wanted to know if anyone could voice an opinion about Gilenya and its effects, cost, etc. Thanks for any help.
Jackie
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beckym2005 responded:
I'm hoping someone posts to this a well. I went to the dr a few days ago and he asked me if i wan to try it out. He gave me the info to look over. I think I am going to try it out - I have to let him know at my next appt - in week Then they will put thru the paperwork to see what it's going to cost. They do have a assistance program for the co pay so i am curious to see what it will cost me. I am nervous because it's a new drug but at the same time - all drugs start out as new drugs. I really really really would like to stop the shots.

Hoping someone on Gilenya will post about thier experience.

Becky
 
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JacalynB replied to beckym2005's response:
Thanks for replying. I hope we get additional replies. Good luck with the visit. In time, can you post more info as you get? Thanks.
Jackie
 
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Muzzkat responded:
Hi,

I was on Avonex for 2 1/2 years. About 6 weeks ago I started on Gilenya. For the first time (in a long time), I feel somewhat normal (whatever that is anymore?). I didn't realize some of the side-effects I had w/Avonex. The few effects I've had with Gilenya have subsided to almost none!

Avonex had definitely been doing it's job as a 'disease modifier'. My MRI's showed no new activity. The jury is still out on weather-or-not I will have the same luck with Gilenya. Right now I feel it was the right choice for me. It's actually been a great choice as far as my daily well being!

Now for the price...I received payment assistance (even though I have good insurance) and it's as cheap as Avonex was. Though the actual cost is somewhere near 3x's as much?

I would say if you qualify for it, give it a try.

Hope this helps, Matt
They say: MS, you don't get it unless you got it. Well...I still don't get it! ;^)
 
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JacalynB replied to Muzzkat's response:
Matt - thanks for your reply. Can I bother you with a little more....did you have to spend 6 hours or so in the MD's office after you took the first pill? Is it a pill you take after breakfast? And, what symptoms did you get after you've been on it? (I still get "flu-like" symptoms from Avonex from time to time and that's since 1997.) The Gelenya site is a little daunting to me, that's why I wanted opinions of people actually taking it. I appreciate any response you or others could give me. Thanks so much. And, good luck with this new med. Jackie
 
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Muzzkat replied to JacalynB's response:
Hi Jackie,

Yeah, don't miss the Avonex flu at all! The Gilenya literature DOES get a little daunting. I questioned it too, but had enough with Avonex and wanted to try it out.

I had to do all the blood work, an adult chicken pox vaccination, an EKG and probably a couple other things I've forgot. The 'first dose' program requires you to be observed the 6 hours after taking it. Your heart rate decreases (not blood pressure), so I guess anything can happen. It wasn't too bad.

Being that it drops the heart rate, and your heart already slows down when you sleep, I dose in the morning. For the first few weeks I experienced butterflies-in-the-stomach. Kind of a frail, nervous feeling about an hour after taking. It would only last an hour or so, then back to normal. I don't notice any effects now.

I give it "two thumbs up" as long as it keeps my mri from showing any progression.

Hope this helps in your decision, Matt
They say: MS, you don't get it unless you got it. Well...I still don't get it! ;^)
 
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JacalynB replied to Muzzkat's response:
Matt, thanks for replying. You were very helpful. I'm doing my research before I delve any further in seeing if I should start Gilenya and your comments were appreciated. Thanks again. Jackie
 
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beckym2005 responded:
So excited, I just got my approval from the insurance that I am approved to take Gilenya!!!! Don't get me wrong, I am nervous because it's a new drug but if i can stop the shots, I almost dont care. My monthly co-pay is supposed to be around 70 bucks and i think it will all be paid by the gilenya program so it hopefully wont cost anything (we'll see?) I start getting the testing dont this weekend. Have to have a eye exam, EKG, and Blood work. I am really hoping I pass all of my tests. I can live without the burning shot every other night.

I am nervous and excited but hopefull

Becky
 
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Muzzkat replied to beckym2005's response:
You go girl!
They say: MS, you don't get it unless you got it. Well...I still don't get it! ;^)


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