Gilenya Side Effects

[daisy.girl]

I thought it would be a good idea to have one thread where we can post side effects. I know for me I have been trying to read so many different posts to see what people have been experiencing since beginning Gilenya.

[Kimba22]

daisy.girl,

I had an increase in leg spastcity for a few months in the beginning(seems to have resolved itself), and an increase in back pain (the nurse I spoke to at my specialty pharmacy said it was due to swollen lympth nodes, but IDK ... would think they all could hurt, you have over 500 of them throughout your body). Still testing pretty low with my lymphocyte count at 4 mos., dr. may put me on every other day dose for a few months. But, haven't heard back re: latest results, yet.

Hope others respond to your thread! It can be time consuming to search for the info.

Best Wishes,

[daisy.girl]

I had my first dose on Tuesday of this week. In the office, I noticed that my eye felt funny, kinda irritated. The nurse told me it had nothing to do with the Gilenya.

My heart rate started at 80 and dropped to 65. and my BP stayed pretty much the same throughout the day.

That evening my legs were aching/cramping and my eyes were burning.

The next day, I felt like I was on speed. My heart was pounding/throbbing and I was shaking/tremors too.

On Thursday, I decided I would wait until night to take the gilenya to see if that helped. It really didn't help, so I ended up calling my Neuro on Friday.

I was told not to take the gilenya Friday or Saturday and to restart it today.....I can say that most of my symptoms have gotten better over the last two days.

I was told if they come back after taking it tonight, then we know it is from the gilenya.

But, I want to know if there is any reason to stop the gilenya? will these side effects get better over time, are they dangerous? If not, I want to continue taking the gilenya!!

[Kimba22]

daisy.girl,

There is no way to know if your side effects (if from Gilenya) will get better or worse. And just because it's not listed as a possible side effect, doesn't mean it isn't. All the possible side effects aren't known yet, plus each person responds diffently to ALL meds. I had a rare side effect (that is not listed) from Rebif, so can't use that one anymore.

Maybe your neuro might consider every other day dosing, to see if you can adjust to it, but expect him/ her to be on the conservative side with their decision. But, you did the right thing by calling them.

Good luck and keep us posted!

[llevey]

More on zide effects

Low lymphocytes is the only problem I've experienced. they are 2.3 as of last test, which is expected for Gilenya, my neurologist said and she also spoke to the Novartis scientific officer in Israel where I am. I'm hoping they start to go up. But I feel wonderful!

[daisy.girl]

I retook the Gilenya last night....and within 2 hours, my right cheek was red (flushed looking), my legs were hurting worse, I had chest tightness/squeezing feeling (not chest pain), dizziness/lightheadedness, the shaky/apprehensive/tremor-like feeling, eyes burning, and abdominal cramps.

My Neuro has concluded that this is an allergic reaction. I am to stop the gilenya immediately, take benedryl and if I have the chest tightness/squeezing feeling again, I am to go to the ER.

[Kimba22]

daisy.girl,

Sorry to hear this. Hope something else is there for you to use instead, but what a bummer.

I had a rare allergic reaction from Rebif.

Hope you have no further problems ... please keep us up to date on how you are doing.

Wishing you the best,

[Jalee]

It has been awhile since I've posted, but thought I would add to this thread of side effects.

I was on Gilenya for 167 days. I have been off the med for 8 weeks.

My neuro believes that Gilenya is the cause of my having pachymeningitis. This is a rare disorder which is an inflammation of the outside lining of the brain. It causes severe head pain, vision problems, nausea, vomiting, dizziness, and fatigue.

While on Gilenya, I had intermittent headaches in the beginning which eventually became 24 hrs. a day. My white cell count was very low, along with low lymphocytes.

I've been hospitalized 3 times, had 4 MRI's, 2 lumbar punctures, CT angiogram, MR angiogram, and extensive bloodwork to rule out other causes.

Last week I had 3 days of IVSM followed by an oral prednisone taper to help with the inflammation in the brain. At first, the pain lessened, but this week it came back with a vengeance.

I don't know if this will ever clear up. It has been reported both to Novartis and the FDA. My neuro says that I am the only person who has reported this side effect.

Right now, I'm not on any DMD.

[Sequoia]

Oh Jalee, I'm so sorry to hear this!

I know you from other MS boards, and I always make it a point to read your posts to see how you're doing.

It's good that they finally found out exactly what was wrong and what the source of the problem was, but that's kind of small comfort, isn't it? I really hope the symptoms will wear themselves out now that you're off Gilenya.

Thinking of you always,

Sequoia

[lchoppel]

Wow Jalee, this is absolutely horrible news. My heart and prayers go out to you. Big {{{HUGS}}}

[Jalee]

Oh Jalee, I'm so sorry to hear this!

I know you from other MS boards, and I always make it a point to read your posts to see how you're doing.

It's good that they finally found out exactly what was wrong and what the source of the problem was, but that's kind of small comfort, isn't it? I really hope the symptoms will wear themselves out now that you're off Gilenya.

Thinking of you always,

Sequoia

Thanks for your thoughts Sequoia.

Here's another update for everyone. I found out this week I now have retrobulbar optic neuritis after having severe eye pain for a week.

I just completed another 3 days of IVSM even though I just had 3 days of IVSM on Aug. 8th. This will be folllowed by a 6 day oral Prednisone taper.

I've also been having more severe head pain, and nausea, but the IVSM seems to be helping to decrease the level of discomfort for now.

I just can't seem to get a break right now. I hope the IVSM works or I think I'll be exploring some more aggressive treatment in the near future. I'm at the end of my toleration level.

[Tothpr]

Reading all of the threads for the first time, I am wondering if the lucky people with a few symptoms are not posting?? After reading all of the posts, I would never have started on Gilenya… Scary stuff

My experiences, so far, have been minimal. The first night was kinda rough with frequent heart palpitations. The heart palpitations have slowly subsided over the next two weeks, and I do not remember the last time my heart went bumpity bump. My introduction to Gilenya seems to have went well, and it is all over but to see if it works…

There have been a lot of good questions posted. One asked for references for MS doctors. There are a ton of Nero’s around, and there is no real way to compare them. Your choice of doctors is critical as practicing medicine is more art than science.

I felt very good under the care of Dr. Kachuck at USC. Once he left USC, I had to pick one of the doctors on staff. I went from being under the care of one of the leaders in MS research nationally, to someone who did not have near the same qualifications.

Good luck to all.

[Leeaura]

Happy on G

I've been on G since early April of this year. So far, I am very happy with this DMD. The only side effect I've experienced was flushing of my face and chest for a couple of weeks. No biggie...

Just wanted to tell those of you that are leary of trying G, there are many of us that are glad we chose this DMD. I personally have no intention of changing at this time.

Hope this helps some of you be more comfortable with this drug!

[GA_Girl]

Happy on G also

I have been on Gilenya since Feb 2012. I am so happy that I chose this med. I was very leary about taking this because I had heard so much negativity about it but now am very happy. I have a little flutter in my chest here and there but other than that, nothing. It does give me extreme dry mouth, but I can live with that. I don't miss the injections at all. Hope this makes some of you contemplating G know that some of us are very happy with it, and lucky have no reactions to it.

[Gorman]

Since March of 2012

I've been on Gilenya since March of 2012. I've not experienced any terrible side effects....Blood pressure and heart rate same-o.....

Guess the only thing going on is that my MS seems to be a bit worse.

I've been on Copaxone since 2000 and then Betasaron, due to body building up anti bodies to drugs.

I can't sleep tonight which is why I'm here. My spelling is poor so please excuse me.

Happy New Year to you all and good luck. I'm superstitious and can hardly wait till it's 2014. :-)