Gilenya Side Effects-caught between a rock and a hard place

[catdaze]

Well I finally started my Gilenya yesterday and just took my second dose.

I did the 6 hrs in doc office, hr-96 went down to 68 and has stabilized at around 80 (lower for me)

The biggest side effect is prickly tingling and itchy skin with no rash. Also, I am struck with oscilating episodes of excessive fatigue and weakness (I take Provigil alreadyto combat these typical ms symptoms). The Provigil does not put a dent in the fatigue though. I also have intermittent blurred vision and occasional neck and back pains. Novartis told me that these side effects should resolve themselves within a month after initiating treatment?

Has anyone else had these side effects and did they resolve?

[jmm9503]

I have also been experiencing the "bone-numbing" fatigue. I spoke with my neurologist and she feels that it will get better. I have been on it (2nd attempt) for 15 days and indeed the fatigue is better. In regards to the itchiness and numbess they are a daily part of my disease. They have gotten worse since starting the Gilenya, (especially at night) but I hope they too will get better. If this is the worst that Gilenya can throw my way, I am going to try to deal with it.

[Cindarelly]

I was hoping you would get more reponse before I posted. I have been having so many migraines I am not sure I can give a fair assessment. I have been sailing through like a ship.
Then I hit a bad spot with migraines, one of the triggers being 'that'time of month.

These migraines started to seem not like my typical ones.. then I started to noticed I did not care if I ever got out of bed. Which I only did to eat some and check FB.. Then I started to notice I really did not care if I ate.. next about the same on fb..
so I decided I had better check my b/p and heartrate..( i have a wristband one ) not a accurate type they all tell me) but for me I think it is low.. (the batteries were low . the first time I checked it. It came out a 49 on the pulse. It is in the 70 and 80 but I am flat on my back most of the time exhausted. I would say this really hit Tuesday with a vengence.. kinda thought it might have been a stomach virus.. (my daughter said she felt sick to her stomach, so I blew that off another day)

No I have not called the dr or anyone.. MY appt is on Feb the 9th Our weather is doing this crazy 71 and hen 40 and I even a few days during this mess I have managed my mile and a half, I am going to go do that right now.My migraines have been known to go through spells of being totally unmanagable then bouncing back. Winter can be H@ck.. But this fatigue is mind boggling and it doesn't feel like ms.. I can barely drag my head, I am totally content to lay and waste away all night and day.

I am more than willing to "get through this" I made it through 6 months of flu like stuff bad on beta.. and was on it for 6 yrs after. Lordy folks that was in what 93 when that first came out 1993 ......I am getting a little older and more impatient.. Lets all Pray.............

[Cindarelly]

I have somewhat made it through today, I don't think my post made much sense. I did want to say that my pulse was 49 and I am sure my batteries were low.
I did change the batteries and it came up, but I am sure it is still low while in the 70's to 80's...
My head is better today, and I have had a little more energy.
I am still pretty much just not myself.. I think this is kind of what some of those may have talked about a "flare" in about the second or third week.
I managed my walk and went back for a few more blocks. Did a couple loads of laundry and that is it. I have done nothing more..I am going to do nothing else but take a bath tonite.
The house can just sit, tomorrow is a different day. Good luck and I am saying those prayers, I am out of meds if I can't take this..

[Cindarelly]

Well I continued to feel fine last night and feel as normal as I get today.
I am not sure if it was the migraines, the Gilenya or both.
I will update the dr and I await every day with caution and fear of a migraine. That is not new, but they are over powering.
It just may be time for some other medication move and preventative.
Lord help me, this dr was pretty honest, there is not a lot that I have not been on...Since it does come in phases I hope this one is behind me.

[mike423]

4 days in on gilenya, will side effects tail off

Hi, I'm in my fourth day of treatment and have to be honest and say that these side effects, both fatigue and headaches remind me of my 5 years on rebif. was on copaxone for last year and a half but new dr thought that it, like rebif wasn't doing its job evident by new legions. i feel terrible and was wondering what if any good news there is. wondering if anyone else has been on the medication for awhile and can give me some feedback. i even called gilenya support before i got on here and surprise surprise they are closed. anyway don't mean to vent, but oh how i miss my daily injection of copaxone.

[Cindarelly]

Not sure what to say, except this is a good place to vent, I started my first day Jan 5th and from Tue to yesterday were a blur sort of. I can't be sure if it was the Gilenya.
I assume your male so your not having a monthly problem have you tried the usual, advil and things. I am sure you have since your up on things with the interferons.

I can only say at this point, today I feel pretty good or more like my usual self.. most seem to report being told that side effects should be gone after a month or so.
Maybe someone will come along with more info than I.
Until then, I would try and hang in there,I tried last week to tell myself "gee it's just pain" but gosh a few times I wanted to give up.. trouble is .............no place to run..
bright spot about the bad days is they usually don't last.
I have found the side effects of most medicines usually do where off.
That's a lot of bad days on the interferon though.. but some people just can't take them... Here's wishing you a better tomorrow.
Check in Please and let us know !

[jmm9503]

I don't want to sound like a whiner, but here goes. I've made it to day 18 this time, and it has to get easier soon. I stopped Gilenya last time on day 18 and I am determined to make it until at least day 45. It is getting tougher. The fatigue is getting worse-I thought that it was getting better but I was fooled. I am not sleeping my usual (3 hours a night uninterupted) because of the pain. It feels as though someone is pummeling my back and the Tegratol is only helping a little. I'm walking around in a "fog" because of sleep deprivation. I still keeping going to the gym daily, only because I know that the benefits are keeping me walking-even though because of the tiredness my gait is off and tripping is a daily event again. Thanks for listening and please think of me as I try to get to day 45 and hopefully the side effects will have vanished by that time!!!!

[Just a small town girl]

I am so sorry to hear that so many of you are having so much fatigue and other issues while on Gilenya. My heart goes out to you. I hope that these issues resolve themselves. I had not even heard that some of these things were potential side effects.

Here's hoping that things starting getting better for you guys and gals!!

[Cindarelly]

I can't imagine either jmm, but I will kick in the extra prayer for you .
I know that I went through more than I have ever heard any one say on beta. I have heard stories about Avonex and the flu stuff.. I have never been on avonex..
It took me a full 6 months on beta.. but I won
Here's to you I know this sounds dumb.. but don't forget to stay well hydrated.. its those little things.. take care of yourself.. it does matter and it does help to ease the way a little bit..

[Caps A.]

I think I have tried them all!

Now I'm back on Avonex, could not tolerate it too well 11 years ago when I was diagnosed, but it's working OK today!

[Jimmi]

I have been on Gilenya for the last 40'days and experience the extreme fatigue and headaches, a few days of severe back pain and flunlike symptoms but most of those did level out'with a few days of fatigue. Now however, I have macular edema which is really scary and have stopped taking the Gilenya. I will be happily returning to the bruises hand swelling from the COPAXONE.

[CrazyCatLady]

That is so crazy that you got macular edema. It only happens in like 0.4% vs 0.5% in the regular public. They had to add it as a side effect because it was slightly higher. My neuro even seemed to think it wasn't a side effect just more of a fluke that happened in the study.

I am sorry. Did they get you on eye drops asap or are they doing the injection??

[Cindarelly]

I am with CrazyCatLady on this one the dr may have jumped too soon to take you off of this.
A swollen blood vessel sounds kinda like something that is not the drug to me ..NO I am not a dr..My neuro made sure my eye dr was up on this drug..

[Day11]

Here's my story

I participated in the double blind with the placebo or drug.. pretty sure I was placebo because first dose dropped me down to 53 bps back up to my normal 82 after a few hours.

My fatigue got HORRIBLE! I take 400mg of provigil and was really not wanting to take it because it wasn't doing anything to help. No headaches, but did have a lot of weakness in legs.

I switched to taking it at night so my Provigil and Lyrica would be the only daytime meds. I wasn't taking the Lyrica during the day too much but I noticed my burning itchy skin started bothering me again, but I contribute it to a flare I had last month. It has been fine, and to be honest taking the Gelyna at night seems to have resolved the fatigue, which always gives me a headaches when fighting to work through my days at work. No other side effects have been noticed by me unless happening as I sleep