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Starting Gilenya Have Some Questions

Updated     14



laurie Says:
 
I will be starting Gilenya in May. I have a 3 month washout period from Tysabri. I will be on Copaxone for 2 months. I was wondering how long it took to start Gilenya from the time they put the paperwork in. The nurse said must have aall the prereqisites done foirst not more than 1 month before and they will put paper work in 2 weeks before i am to start. Does this sound right. Thanks laurie f

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Verwon Says:
 
Gilenya contains the active ingredient Fingolimid, it is used to treat relapsing MS.

It may cause some problematic side effects, such as: slow heart rate, headache, head cold and fatigue.

As to the paperwork, the pre-requisites are actually more to do with your insurance/coverage than anything else, so I am afraid that I don't know anything about that.

This medication has been FDA approved, but its usage isn't very common and it is very expensive, therefore your insurance company does have to give prior approval to cover it, which is very common in such cases.


http:/­/­www.medschat.com/­wiki/­Fingolimod/­

Are there any comments or questions?

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2
Shel Says:
 
I just started Gilenya 2 weeks ago. It was 2 months from the time I got the approval from my doctor and the insurance company to the time I was able to start. The complication for me was that my doctor wanted to admit me into the hospital to be on a heart monitor for the first dose and the hospital didn't have any beds for a full month. I finally switched to a different hospital and asked my regular doctor to assist with the first dose process. I was monitored for a full 24 hours. My heart rate did drop but not below 60 beats per minute during that first 24 hours. I am so happy to have the opportunity to be taking Gilenya. I have had a stuborn headache almost every day and some fatigue but it is minor. I have taken Avonex in the past and the flu like symptoms never went away in the 5 years I was on it (and the injection was gnarly). Then I switched over to Copaxone. The daily injection was way easier (would have done 2 a day compared to the Avonex). But neither drug slowed my progression enough. I am hopeful for you that your first 2 weeks go as smoothly as mine. It is worth the wait.

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3
laurasari Says:
 
Thank you for responding. Would you mind sharing why you needed to be an in patient for 24 hrs, the recomendation is 6 hours in an office.

Thanks i am glad you are happy with it.
lauire f

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4
Courtney Says:
 
I have been on it for three months now. My headaches are getting much less frequent then they were in the beginning. My first dose at took at my neuroligists office..it was a six hour stay but I wasn't hooked up to anything just periodically checked on..no problems to report! :)

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5
debbie Says:
 
is it better then ampry i think thats how its spelled

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6
24char Says:
 
To Debbie, Amprya is not used to stop or halt the progression of M.S. I take Amprya and Copaxone, they don't do the same things. The Ampyra will help with walking problems and the Copaxone is to stop or slow the progressions of the disease. Hope that answers your question. I hope to change from the Copaxone to Gilenya soon. Very happy with the Amprya but sick of doing shots, has been over 15 yrs. and have no spots left that don't hurt.

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7
Andrew Says:
 
Hi Courtney, Did you find you had any other problems in the first few weeks? I have read that the absorption does not reach peak levels until 5 weeks in. What was your experience?



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8
Lynn Says:
 
I started it six weeks ago, the first month I was so fatigued did any one have this problem? Its seems like it is getting better but have had bad headaches and seems to be getting worse?

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9
Kitty135 Says:
 
My doctor put a rush on my Gilenya order, and it took about 4 weeks to get all of the necessary bloodwork/eye test/ EKG done and hear back from the company. My first dose was at an outpatient place....6 hours....not terrible. I've only been on it for a week but haven't had problems with fatigue any more than I was having before. I have been having pretty bad headaches, but hope they will subside as my body adjusts to the pill Good luck!

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10
Andi Says:
 
I have taken every treatment for MS that is out there. Since Gelenya does not require a needle I have very high hopes for this drug ... the only other drug that worked for me was Avonex ... and that needle was ... was ... a freaking harpoon! The headaches that most of you mention concern me a bit as I am prone to headaches ... but with alieve hopefully I will survive it. From the time Nurologist Barbi (you should see this woman - big blue eyes and lots of blond hair - cute as can be, but all and all a very good doc - wouldn't trade her) decided to give me the drug till the 7th of Oct when I will start taking it will be just over a month. I had no coverage issues with insurance at all. They smiled, cleared their throats and paid out the pile of money I know this stuff costs. God luck to you all - lets hope this capsule does what we all need it to do.
~Andi







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11
Franny Says:
 
I started Gilenya less than a week ago. I did have my heart-rate drop to about 49 (possibly lower) my first dose. I did also feel as though it was hard to breath for the rest of that day and also after my second dose. It's still difficult for a little while each day about 6 - 7 hours after I take the pill, but getting better.

I have been feeling SUPER tired though, and while i'm used to being a little tired all the time, it's unusual for me to be passed out by 9:30 on a Saturday (I'm not really a party girl, but I can usually hold my own til midnight chatting or whatever). I also feel a little down, but it's been a long summer so maybe that's just situational?? What are your experiences with this? Can I expect the fatigue and gloomy feeling to subside like the breathing etc?

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12
Marty Says:
 
started taking this drug dec 28th. not noticing any problems as of yet. heart rate did not drop with first dose. I would like to hear about some people who have been on it since 2010 when it was put on the market.


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13
Lety Says:
 
I started Gilenya 6 weeks ago, I am experiencing fatigue and joint pain.
I wanted to know if this is going to pass once my body gets used to the new drug.
Any comments will be appreciated.

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14
jaellezee Says:
via mobile
 
I was glad to find this forum for people to post their experiences with Gilenya. I started on it ...passing & getting thru all the prelims including insurance& 1st dose with no side or ill effects. Just what I expected! Wonderful... (?) But not so fast. After week 2 the less common side effects like headache, a dark depression, anxiety, fatigue, sleepiness, upset G.I. tract & body aches all showed up. I was quite discouraged. But reading here made me feel less alone ~ less of a 'Gilenya Freak' and I am happy to report that at week 4 those symptoms all seem less severe. Never has I had a drug messed with my head like this one tho. Will discuss with the doctor dosing at night instead of morning. I think that might help me further. I'm happy many have not had trouble, but decided to post here because, for me this drug DOES HAVE SIDE EFFECTS~ I'm trying to stick with it...to see if its all worthwhile. Good luck to others.<3

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