Gilenya is Here :)

[MSRSX]

Just wanted to update, as its been over a month.

I am loving the Gilenyia so much. I has serious issues with the daily copaxone injections, they were really emotionally and mentally effecting me, so popping a pill each day is a huge bonus for or (of course the possible higher efficacy rate is more so). Other than a slight lowering of my pulse on first dose I have no experienced and other side effects, and so far so good with my MS.

I went on vacation to Mexico and it was a relief to just take this little packet of pills, not the needles, the autoject, the sharps container, etc. That had been a major stressor for me last year and its nice that its gone. I had a great time on vacation with thankfully no new MS symptoms, and it seems no heat sensitivity for now.

There are stretches of days I forget I even have MS, which is wonderful. (Of course, I am lucky and have very mild residual symptoms).

I hope everyone else is doing well

[MSRSX]

Just wanted to update. I have been on Gilenya since 11/30/2010 - so almost 4 months.

I have not had a relapse since (not really indicative or anything, I would have hoped not to have one.

I actually am seeing a reduction in my heat intolerance, in regards to exercise. I am training for Bike MS in June, and I have notice that when I get off the bike I am still heated with fuzzy vision but my recovery time is about 5-10 minutes instead of needing to sit inside with a cold drink for 30-45 minutes that it was before hand.

Is it the Gilenya? Who knows. But I havent had a side effect since, so I am going to stick with it.

I am getting the bloodwork down this week for the 3 month follow up. I really am a bit nervous that they will find something that makes them take me off of it... I cannot and willnot go back to copaxone, I just cannot do that again.

[Just a small town girl]

I am getting the bloodwork down this week for the 3 month follow up. I really am a bit nervous that they will find something that makes them take me off of it... I cannot and willnot go back to copaxone, I just cannot do that again.

I'll keep my fingers crossed for you. That's my biggest fear, that I'll have to switch to something else. I don't ever notice any side effects and it's so easy!!

If it's any source of comfort, I've had both elevated liver enzyme levels and a lymphocyte count that my neuro thought was too low for comfort. For the liver enzymes they just monitored me closely and for the lymphocyte count they pulled me off for 10 days and once the count came back up put me back on and are monitoring me closely. Even if the lymphocyte count drop happens again, it still seems like the plan is to keep trying to make sure I can stay on the Gilenya.

Keep us posted and let us know how the 4 month appointment goes!

[MultipleMiss]

Started Gilenya & blog!

Hi there,

I just started Gilenya one week ago, and I decided to also start an MS poetry/journal blog to document what I am experiencing with the medication and the disease.

It was very frustrating to get started, but I am also very hopeful. I was on Copaxone, then Rebif, then Copaxone, then IVIG (Gammagard) and now Gilenya...

I would love for anyone to check out my blog and see what they think! *** Moderator's note - Personal URL removed per MSWorld guideline #8. You can put the link in your profile for all registered members to see

Thank you!
Lori

[MichieMS]

Headaches?

I started Gilenya only yesterday - in a hospital with my neurologist there ... I felt fine all day ... last night a headache started - I guess I ignored it, didn't take anything for it and went to bed --- unfortunately, I woke with a headache too - by my left ear, my left eye - all day at work it bothered me ... is this part of the side effects for this new drug? Any help, any answers and any recommendations would be greatly appreciated

Michelle

[Cindarelly]

I have migraines and they have increased since starting G. I started in Jan. So I am hoping it gets better. I know headaches and migraines is listed as a side effect.
My weak spot is my head

[CrazyCatLady]

My weak spot is my head

Sorry but this made me laugh. When I first read it I took it as "MS humor." LOL!

[Cindarelly]

LOL in a way it is

[pds517]

Just wanted to update. I have been on Gilenya since 11/30/2010 - so almost 4 months.

I just wanted to thank you (and all of the other posters) for sharing your progress with us. This medicine was brought up to me by my neuro b/c I was having a problem with being compliant on my Copaxone. I opted to have a fresh start with the Copaxone instead of switching meds b/c of several different factors. But, I am interested in following this particular meds progress with folks. Thanks for sharing it and following up with us.

I hope you continue to do very well on it. I know everyone handles meds differently, but your system seems to agree with this new med and I hope that it continues for you!

[kwaho]

Starting on Gilenya

Thanks to all of you who have posted their progress. I start Gilenya next week after 12+ years on Copaxone. The progress reports are quite helpful. It is a little scary to make the switch but the Copaxone does not seem to be as helpful as it used to be. I am excited but scared.

[S.A.Foxx]

Hi all. Just got pre-approval to go on Gilenya last Tuesday. So now all the testing etc needs to be scheduled in and I've got to let my system clear out the Tysabri, which is apparently a three month process.
I will admit to being a little worried about the three month gap between medications and the list of side effects, mainly the muscle weakness, as I work a fairly physical job still.
I just want to thank everyone for their stories on this drug, and please, keep them coming.

[Jimmi]

First time to post a response so here goes. I was taking COPAXONE and recently changed to Gilenya. As others posted I had extreme fatigue, back pain, head aches and flu like symptoms for a couple of weeks. I started to stabilize but felt the fatigue was in the background. For instance I forgot the pill for one day and during that day experienced fatigue??? But now I have a new symptom that caused me to stop the medication. I am experiencing macular edema, the doctor did not use those words but explained I had a swollen capillary behind the retina which was causing blurring in the center of my vision of the right eye.

That was the final straw because I wasdoing fine on COPAXONE andwas only interested in eliminating the inkections. Now I look forward to them. I had no symptoms from COPAXONE other than swelling and bruises at the injection site.

[CrazyCatLady]

I am experiencing macular edema, the doctor did not use those words but explained I had a swollen capillary behind the retina which was causing blurring in the center of my vision of the right eye.

Did they do a full eye exam on you or just assume because of your blurring that it was macluar edema?

[Just a small town girl]

First time to post a response so here goes. I was taking COPAXONE and recently changed to Gilenya. As others posted I had extreme fatigue, back pain, head aches and flu like symptoms for a couple of weeks. I started to stabilize but felt the fatigue was in the background. For instance I forgot the pill for one day and during that day experienced fatigue??? But now I have a new symptom that caused me to stop the medication. I am experiencing macular edema, the doctor did not use those words but explained I had a swollen capillary behind the retina which was causing blurring in the center of my vision of the right eye.

That was the final straw because I was doing fine on COPAXONE and was only interested in eliminating the injections. Now I look forward to them. I had no symptoms from COPAXONE other than swelling and bruises at the injection site.

I'm sorry you had this experience. Macular edema is actually just fluid and protein collect under / around the macula causing it to swell. So it doesn't sound like you have macular edema, but I'm glad that you're making the right choice for you.

I hope the transition back to Copaxone goes well!

[Jimmi]

Eye problems may be caused by Gilenya

Did they do a full eye exam on you or just assume because of your blurring that it was macular edema?

I saw my optometrist who performed the initial inspection required to start Gilenya. He immediately referred me to a retina specialist who took photos with and without contrast dye and examined my eyes. Before the Retina photos The Dr. Diagnosed me with Central serous chorioretinopathy. Basically fluid under the Retina. Then after the photos he told me that he thought the inflamed artery behind the Retina was caused by MS. Then when I reminded him that I had just started Gilenya he Googled Gilenya and returned with a diagnosis that the Gilenya caused the swelling.