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

[laurasari]

My first dose was yesterday but it did not go well stayed from 9am to 6pm. and then went back today without a pill i have taken for years, today went better. I had 2 ekgs yesterday heart rate went to 42 and made it up to 46 untill i left then went to 52. Today it went from 62 to 52 and left it was 56. I thought he wasd not going to let me take home the med but he did just told me to watch out for my symptoms of dysautonomia. I hope i get some things back that i recently lost waiting to go on this med while i was off from Tysabri.

[miketurk]

Cat scrath (a little humor I hope)

Had exactly the symptom you report. Felt tingly. It went away in about 2 to 3 days. My skin was a little pinker than usual for 48 hours. I am very pale complected and rarely get sunshine whee I live. If a I lightly (no pressure) placed my finger on my belly (any place on you that does not see sunshine) it was just a little white and the surrounding skin was darker than usual. That went away. If you get visible goose bumps or swelling in your throat call your doc. You probably would have had worse symptoms by now if you were going to get them. I did not get any worse and hope you feel better soon. Let us know how it goes for your.

I know it is a little nerve wracking but since then I have had no other issues.

[jmel]

Thank you all so much for sharing your experience with this medication. I am newly diagnosed and I feel it so helpful to really hear the news from the "trenches" so to speak. I like to hear the good, the bad and the ugly.

I know Novartis is still conducting long term safety trials to collect additional information regarding adverse events,etc.

I chose Copoxane since I wanted to avoid flu like symptoms. But, just like all meds..I know there are trade offs.

I had already chosen Copaxone when I saw my new doc at major academic center. And, I just happened to ask him how many folks that they had on Gilenya. He said about 65.. I asked how it was going. He said they were seeing more side effects than he would have liked. Of course, this is just ancedotal information.

But, remember you can always report adverse events directly to the FDA. The more information that we caputre on adverse events when a drug is in the "general" population and not just on a double blind trial the better.

I am probably already repeating what someone else has said.. But, thought it might be worth sharing.

Hang in there everyone!

jmel

[Tom Lewandowski]

Gilenya First Dose

Yesterday was my first dose of Gilenya and I was very pleased with the experience ... especially after reading about the experiences of others. It went very smooth, with my heart rate going from 92 to 72 bpm by the time I left the clinic. The only side effect so far, fatigue, was only a little more significant than I experience on an average day. Later in the evening, and again today, my HR lowered a little more and seems to have stabilized at about 62 -68 bpm. Low for me, but perfectly normal.

Since I'm only on day two, I really can't provide a complete evaluation of Gilenya, yet. Again today, the fatigue is more significant than I normally experience ... but certainly something I can deal with. Some minor lower back pain, too. Compared to the side-effects experienced the entire last year while on Rebif, this is nothing. So far, that is.

My age may be a factor (I'm 56 and was diagnosed with MS twenty-nine years ago.) I've gone through a lot of nasty MS flareups and have dealt with a lot of medication side effects over the years. So at least in comparison, Gilenya side effects seem to be having a very minimal impact on me right now.

Part of this positive experience may also be the gradual lifting of depression I was experiencing while on Rebif. Since stopping Rebif, the depression continues to lesson and I'm feeling much better in that regard. This was one of the primary reasons my doctor wanted me to quit Rebif and start Gilenya. Hopefully, Gilenya won't produce that side effect in me, though it is still a possible side effect of the drug.

What's In A Name?
I have found it fascinating that everyone that references the drug, Gilenya, pronounces it differently. Even when I called Novartis (the manufacturer) with some questions about fingolimod, they pronounced 'Gilenya' strangely. Most often, I hear it pronounced something like... jilenia, or gilinia (hard 'g' sound.) The medication guides and package inserts all clearly state HOW to pronounce the name of the drug: je-LEN-yah

So far, I've not heard anyone pronounce the drug's name properly... Strange.

[ms man]

Yesterday was my first dose of Gilenya and I was very pleased with the experience ... especially after reading about the experiences of others. It went very smooth, with my heart rate going from 92 to 72 bpm by the time I left the clinic. The only side effect so far, fatigue, was only a little more significant than I experience on an average day. Later in the evening, and again today, my HR lowered a little more and seems to have stabilized at about 62 -68 bpm. Low for me, but perfectly normal.

Since I'm only on day two, I really can't provide a complete evaluation of Gilenya, yet. Again today, the fatigue is more significant than I normally experience ... but certainly something I can deal with. Some minor lower back pain, too. Compared to the side-effects experienced the entire last year while on Rebif, this is nothing. So far, that is.

My age may be a factor (I'm 56 and was diagnosed with MS twenty-nine years ago.) I've gone through a lot of nasty MS flareups and have dealt with a lot of medication side effects over the years. So at least in comparison, Gilenya side effects seem to be having a very minimal impact on me right now.

Part of this positive experience may also be the gradual lifting of depression I was experiencing while on Rebif. Since stopping Rebif, the depression continues to lesson and I'm feeling much better in that regard. This was one of the primary reasons my doctor wanted me to quit Rebif and start Gilenya. Hopefully, Gilenya won't produce that side effect in me, though it is still a possible side effect of the drug.

What's In A Name?
I have found it fascinating that everyone that references the drug, Gilenya, pronounces it differently. Even when I called Novartis (the manufacturer) with some questions about fingolimod, they pronounced 'Gilenya' strangely. Most often, I hear it pronounced something like... jilenia, or gilinia (hard 'g' sound.) The medication guides and package inserts all clearly state HOW to pronounce the name of the drug: je-LEN-yah

So far, I've not heard anyone pronounce the drug's name properly... Strange.

Glad that you're off to a good start with gilenya.I've been on Tysabri for 21/2 years and it's been great for me.
I'm considering Gilenya bacause of the convenience of taking a pill at home.Perhaps I'll consider it if and when Tysabri stops working.For know if it ain't broke I ain't fixing it.

[Myoak]

Reading through this series of comments it seems that most of you are not exactly thrilled with Gilenya. Then one post from 04/14 implied that everyone was doing well! My doctor is suggesting that I try Gilenya. I was on Betaseron for over 14 years stopping in July '08 as my injection sites became unusable. Then I tried Tysabri for 6 months which I found to be worthless for me. Awful side effects were the only result I found. I had no plus sides to that treatment. I quit that in Jan '09. Then in Jan '10 I did steroidal IVs for about a year but since Jan '11 I've not been on any program.
(Sorry, I know this is a bit wordy.) I want to read the good & the bad of Gilenya but the majority of the posts are leading me to believe that this may not be the way to go. I haven't had an exacerbation in years (diagnosed in '74 - first "real" attack was May 12th (Happy Anniversary!!) in 1989). I've been pretty stable since about 2003-ish. I'm considering just pressing on without going into a program but at the same time, I'd like to at least maintain this level of MS disability. Does this a make any sense? Thanks, Pam K in Arkansas.

Hi PammieJ,
One of the things you might look into if you are not on a med but still want to do something which may benefit people with MS is an anti-inflammatory diet. Just google it. There are several. Some people with MS seem to have good success with that type of diet. Just a possibility to let you know about. Best Wishes

[Sequoia]

Hi PammieJ,
One of the things you might look into if you are not on a med but still want to do something which may benefit people with MS is an anti-inflammatory diet. Just google it. There are several. Some people with MS seem to have good success with that type of diet. Just a possibility to let you know about. Best Wishes

There's lots of information on anti-inflammatory diets and diets specifically for MS on the Tara's Nutrition & Supplement Notebook forum.

http://www.msworld.org/forum/forumdisplay.php?f=70

[nappy]

Considering Gilenya

At my 6 month check up at the end of April, my neuro gave me information on G. I have been on Copaxone for 4 years but have had two flares in the last 4 months. So she thinks that the C isn't working any more.

I have the opportunity to join a study where Estriol is added to Copaxone.

Or consider switching to G in August.

I teach primary aged children and am extremely concerned about experiencing some of the side effects- especially at the beginning of the school year.

Does everyone go through the period of migraines and extreme fatigue?

These are two of my worst MS symptoms and I take Axert and Amantadine for them- would these medications help with worsening symptoms brought on by the G?

Thanks for any insights

[amandarianne28]

So for now Im on Tysabri. I am going in for Stratify II tomorrow and if I show JC Virus effects I will be taken off it and my last choice will be to try Gilenya. However, after reading some of these posts I am more than a little scared.

I have had great success on Tysabri. I did not want to leave it before, and I really do not now.

Good luck to all, and I will keep coming back to see how its going for all

[Cindarelly]

Nappy my migraines were out of control the first 2 months. I am on a beta blocker as a preventative. The dr had to take me off of that to start G. That is why they were so out of control. I do not know how bad your migraines are.
Let me say this. I have a PFO and at best my migraines are 2 or so a week.. so I don't think I am a very good person to model..
I started not to answer.. at any one time when my migraines go out of whack I can happened without G and was triggered by Sinus.. I started not to answer.. but I thought if you had seen my other post you might wonder why I did not .. My migraines are on the extreme side for many reasons other than G.. Good luck in your decision

[Safierdrgn]

I've been on Gilenya for 8 months now and if I *have* to be on a drug I'd take this one over anything else. Before I started Gilenya I had balance problems, complete numbness on my stomach and numbness in both hands. I was also in intense pain every day.

3 months after being on the drug the numbness went away, about 5 months after that my balance returned. I still have intense pain, but I will take that over not being able to keep my balance. I have bouts of headaches and lower back pain but it's nothing I can't get over.

When starting the only side effects I had were fever chills which went away after about a week. I was also able to get off the welbutrin I was taking for depression.

[lchoppel]

So many of you have so many different side-affects, and some of you are thankful that you were able to return to your prior treatment. Wow, I didn't realize that there were so many negative side affects to G. I'm currently on Tysabri, and have thought of going on G. After reading this thread, I'm happy to stay right where I am.