Starting Gilenya Have Some Questions

17 Replies Updated

Conversation Starter

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.
laurie f

Showing Replies 1 - 17 of 17 RSS Feed

Page of 1     Sorted By:
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.


Are there any comments or questions?

Was this helpful?     0     0  
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.

Was this helpful?     0     0  
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

Was this helpful?     0     0  
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 was a six hour stay but I wasn't hooked up to anything just periodically checked problems to report! :)

Was this helpful?     1     0  
debbie Says:

is it better then ampry i think thats how its spelled

Was this helpful?     0     0  
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.

Was this helpful?     0     0  
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?

Was this helpful?     0     0  
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?

Was this helpful?     0     0  

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!

Was this helpful?     0     0  
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.

Was this helpful?     0     0  
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?

Was this helpful?     0     0  
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.

Was this helpful?     0     0  
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.

Was this helpful?     0     0  
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 see if its all worthwhile. Good luck to others.<3

Was this helpful?     0     0  
Kim Says:
via mobile

I've been on it since Dec 2014. I am having some of the worst depression and difficulty thinking and remembering I've ever encountered. I've been diagnosed with depression since I was 12. The crazy thing is I thought it was just me until a nurse from the specialty pharmacy asked me some questions. Then it clicked. I'll be talking toy doctor, but hate taking antidepressants. But I can't live this way.

Was this helpful?     0     0  
Brandi Says:
via mobile

My son is 18 and was recently diagnosed. He just started Gilenya 4wks ago and just this weeks started with some headaches that seem to come and go. Has anyone's Dr. said if this is a normal/safe side effect?

Was this helpful?     0     0  
Leasa Says:

I hate anti depressants with a passion, as I've seen the horrible side effects they can have on a family first hand. That being said, I couldn't stand the depression caused by this disease!! My doctor recommended Pristiq, and I've LOVED it! It doesn't make me feel foggy or "out of it" at all. Even better, it allows me to be happy and excited still when the situation calls for it!!! You may want to research this particular medicine because it has done wonders for my light depression without turning me into a zombie at all.

Was this helpful?     0     0  

Viewing page 1 of 1     Reply

More Discussions:

Just started Suboxone... Have some questions!
I just started a Suboxone treatment. I can't even tell you what a relief it is! I guess I didn't believe there w... 5 replies
Just started estrogel and have some questions
I just turned 50; been having terrible night sweats for past 3-5 years. Last year I had a uterine ablation/removal of po... 1 reply
if you have questions
While it is nice to find an online forum to share stories and post questions it is crucial to note that if you have any ... 1 reply
cipro questions need some help
Hey my fiance had taken cipro and was curious if you have joint pain would your Dr. Still prescribe this drug to you? sh... 1 reply
New here and have questions
Hi! Was on methadone for years and just not helping anymore so dr. put me on morphine 15mg er and 10mg oxycodone. First,... 1 reply
Just started Vyanse and have questions
I'm so happy I found an active forum. Been googling all kinds of search terms because I am new to this medication an...
Took my first subutex 8mg have questions about following up
I took my 1st 1/2 of an 8mg subutex sublingually this morning at 10. I felt some pain relief in 20ish mins, felt safe en... 1 reply
Just started methadone treatment. I have questions.
I'm a 38 year old addicted to pain pills for about 20 years. My husband passed away this year Feb 14. That's whe... 2 replies
30 Mg Oxycodone just got script today and have questions
I just got put on the oxycodone 30mg and at my next visit I am then getting put on oxycontin. But we r trying to figure ... 6 replies
Does anyone taking morphine sulfate 15 mg cr have difficulty sleeping and other PM Questions?
After 10 years of taking Hydrocodone for Chronic lower back pain, doses increasing over the years, my new PM Doctor has ... 4 replies

Post a Reply

No registration needed.
Simply fill out the form below.



 Optional, stays hidden.
Get notified when a reply is posted here.

4) Text Verification: *
Prevents SPAM.

Click here to show the question

with the privacy policy (20191231).

This form will be submitted securely


Discussion Thread Guidelines: Any participation in the discussion threads signifies your agreement with the Terms of Use and Privacy Policy. (1) Act civilized and be respectful towards others. No profanity, vulgarity or lewd / suggestive content is allowed. (2) Posts encouraging, facilitating, or seeking advice about the abuse of medications or other substances are prohibited. (3) Personal contact information (such as telephone numbers, email addresses, etc) is not allowed to appear on our discussion threads. (4) We do not allow our forums to be used for buying, selling, trading, or for the promotion of a product or service. (5) Posting external links to other web sites is not allowed without our prior approval. (6) We reserve the right to edit or remove content which we find objectionable to the community at our sole discretion.

Note: All times displayed are GMT - 7.

This information has been independently compiled and is for informational purposes only. It is not intended to be a substitute for medical advice from a qualified healthcare professional; nor is it intended to diagnose, treat, cure or prevent any disease. For more details please see the Medical Disclaimer. This page was last updated on 1 August 2016.

We are committed to your privacy.

Copyright © 2005-2020 All Rights Reserved. MedsChat® is a registered trademark of Limelight Innovations L.L.C. 9888 W Belleview Ave #5000, Denver, CO, 80123, USA