Gilenya - Fingolimod Does It Trigger Depression? (Top voted first)

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I am on day 10 just started Gilenya with 6 other MS people. The first 5 days were fine then fatigue started big time sleeping 10 hrs a day, felt very teary, anxious and overwhelmed.
By day 7 I couldnt stop the tears, no energy couldnt speak to anyone, felt so isolated and worried is this what my life is going to be like on this new ms drug?
I have searched on the net ans some are saying it relieves depression? Im not on anti-depressants and I dont want to go on them, I go to the gym to keep me emotionally and physically ms at bay. Im 50 yrs old and have had ms since I was 19yrs Ive been blind and had every disability due to ms.. Ive been very lucky to over come every one.. My dilema now is secondary progressive lesions on my brain and my spine too many to count... Ive been lucky never used a preventative until 6 yrs ago, copaxane was the only one that worked.. I just developed lypo atrophy :( no more injecting no more preventatives for me until Gilenya came along... Does this mean my quality of life with Gilenya will be less than being on nothing? Or does this mean I slip into secondary progressive if I go natural? I want to stay strong live independantly still go to the gym be mentally healthy but I hear one thing from the doctors, family, friends and then there's my head speaking, Im fighting every day but Im loosing the strength... Anyone out there have any thoughts about Gilenya and if it triggered anxiety, depression, extreme fatigue and did it go away. Ive been told hang in there for about 6 weeks and it will settle down?

11 Replies

Earliest Newest Votes
6

i started gilenya three days ago and I havent stopped crying and I feel so anxious and overwhelmed by by everying I dont know what to do.

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10

THANK YOU!! I am on day 4 and can not even respond to this without tears rolling down my face!! It is the 4th of July and I have decided to stay home because I couldn't shower without "loosing it" or get dressed. Every thing I find on the web is all praise meanwhile I am hanging on by a thread!!

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2

We do have an existing discussion from people that have been discussing their experiences using it, you can find it here:

https:/­/­rxchat.com/­Discuss/­starting-Gilenya-have-some-questions-214921.htm


As to the possible side effects, they aren't really well known, yet, since this is still a very new medication, so it's known that the fatigue is normal, but if you are experiencing such severe depression symptoms, I can really only suggest that you speak to your doctor about it.

https:/­/­rxchat.com/­wiki/­Fingolimod/­

Are there any other questions or comments?

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3

After being on Gilenya for about 4 weeks, I noticed that I was feeling very down. It progressed, and by week 6 I was a mess, crying over anything, several times a day. I was put on antidepressants to counter act the Gilenya, an it helped (although I never did feel myself, just stopped crying all the time). Now 6 months in, I find that I am becoming severely depressed. Just this week I began upping my does of the anti depressant to see if it makes a difference (went from 20 mg to 30). Have seen no improvement, but it has only been a few days... Also, i have been having lots of symptoms, adding to the depression... While no one will admit that depression is a symptom of Gilenya, every month when I order it, I am asked about depressive symptoms... I lie, because I want to stay on it, but am now wondering if this is the best med for me!

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5

My sister was on Gilenya for almost 4 weeks. After the first week, she found that she was consistently unable to get a full night's sleep. She began experiencing minor anxiety which was odd because she does not have a history of panic or anxiety whatsoever. After about 3.5 weeks, she had a major panic attack while eating breakfast with family & friends, and has since been in a constant state of anxiety without an appetite or the ability to sleep through a full night. Her doctor took her off the Gilenya and advised that even though anxiety hasn't officially been reported as a side effect, he is almost certain the Gilenya is responsible for the anxiety and lack of sleeping. She has now been off of the drug for about 2.5 weeks and unfortunately is still feeling the side effects: inability to sleep, extreme anxiety, physical discomfort, and depression. She is temporarily on Ativan and Ambien to help her sleep. Gilenya can remain in your system for 2 months after the last dose, so her doctor thinks these symptoms could last a few more weeks but that it's just a matter of time before she feels normal again.

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11

I have been taking Gilenya for a month. I've had MS for 20 years (Beta, Copaxone, Aubagio). I am crying all the time. I've been sad before, but never properly depressed. I'm so very tired. Tired and miserable. What is the point of MS drugs that ruin what is left of your life?

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7

Hi Rebecca, be sure to notify your doctor. The drug is quite new and it seems like depression and anxiety could be a side effect that's not officially on the books yet. My sister is now on avonex and so far is doing much better - no anxiety and depression side effects. Best of luck, you'll get through it!

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8

I have been treated for depression successfully and have been on Gilenya for 2 weeks and I am very depressed crying all of the time, feel hopelessness and just feel like life is not worth it , yes MS affects my life but to be like this is it worth it also have anxiety and my heart is beating strange and yes they said it would the 1st day but every day. I dont want to live like this.

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1

I have been on Gilenya for nine months now and had to stop for two weeks because even though tested postive to the chicken pox virusI I ended up having shingles seemed to have never felt the same! The main reason I'm responding is because I have felt the same way and has not gone away seems to be just getting worse and have started having spasms in my eye daily. I have been on betaseron, tysabri, copaxone which I would get huge welts where injected, rebif did nothing but put permanent injection indentions in my muscles, so I figured it was time to stop shot. I have had ms for twenty years and considered in secondary progression, but I have never felt like I just want to sleep no matter how long. I have always been very careful and do my own research on medication prescribed but can't sem to find any else's imput on Gilenya!

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9

I know how you are feeling but I have now come off Fingolimod and trying Tecfidera but I have only had a few relapses maybe four a year and only been diagnosed 7 years ago. I felt bad on Fingolimod and had lots of problems with my chest tightening and breathing problems. I hope you feel well soon and speak to your consultant at the hospitalx

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4

I've been on gilenya since mid-July and had a flare up after vacation (3 weeks on gilenya)...still not back to baseline, had dizzying l'hermittes all weekend, and when I wasn't sleeping, I was crying. Guess I'll be on the phone with my neurologists tomorrow, but really not feeling great about another drug...was really banking on this one. Horribly disappointed!

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