anyone here have been using gilenya for 9 months or more??

[arabia]

Greetings,

anyone here have been using gilenya for 9 months or more??

please tell us, if there are any improvements or any bad side effect

[jmm9503]

I started Gilenya 12/15/10. Had an increase in my MS pain for about 3 weeks. The increase stopped and went back to normal (whatever normal is), and I have had no problems since. My neurologist repeated a MRI at 6 months and for the first time I had no change in my brain nor spinal cord. Since Gilenya this is the first year that I have not had a major relapse. So far so good, and YES I will continue on the Gilenya!

[empirerecs]

I'm on G since July 1. I had a lapse of DMDs of about 6 or 7 weeks before and in that time either had a flair or sx's that were being kept at bay by the Betaseron showed up (pain in hands and feet sort of like arthritis and more spacisity in my calves). Since starting G, those have not gone away and I am experiencing hair loss. Other than the hair loss and no "fix" of the other things I don't have problems.

I know this doesn't fit the question of this thread but I'm hoping that some posters will list some of their issues and/or "fixes" while on G.

I am starting with a new neuro in a new state in November and I'm sure he will do another MRI to see if the G is working.

Thanks, I am hoping to hear some good stuff as I'm rethinking this med.

[Just a small town girl]

I've been on since November 2010. At my 6 month follow-up MRI, I had absolutely no new activity and all of my old lesions either shrunk, grew less intense or just flat out disappeared. My neuro was ecstatic. On a daily basis, I've had no noticeable side effects from the drug.

I had elevated liver enzymes (resolved on their own) and too low lymphocyte count (resolved after a 10 day rest from the drug).

I've had one flare since being on the drug, but realistically I was studying for the Bar Exam and my father was about to have his leg amputated, there was no way I wasn't going to flare.

So far I love the drug. We'll see what the 1 year follow-up MRI turns up next month, but as things stand I plan to stay on Gilenya. It's exceeded my neuro's expectations to date and I'm thrilled as well.

[MSRSX]

I started on it 11/30/10 and other than the initial drop in heart rate don't notice much day-day.

I am not sure if this is caused by it or not, but i feel like my overall heart rate while exercising might be lower....my max heart rate went down (working on getting it back up) but this really only comes into effect when I am well into aerobic activity (I bike/spin).

Just had an MRI and no new lesions, one was enhancing before that isn't, one shrunk a lot, and a tiny one is enhancing now that wasn't. So not 100% good... but no flareup and no new lesions works for me!

I was on copaxone for a year before - at my 1 year MRI I had several new lesions and 3 enhancing.... so I am happy.

[CrazyCatLady]

I started G on Dec 14, 2010. So far no bad side effects and my MS is much milder then before I started G.

I was dx;d on June 29, 2010 and was on Avonex for a very short time but didnt like the long needle, then was on Betaseron for 2 months but it made my hair start to fall out. On G I have been fine.

[puffin110]

I was on Gilenya for about 6 weeks and had a terrible side effect. My immune system went to "0", liver enzymes were 1700, had 104 fever , throwing up, couldn't walk and had about 4 infections. I was in intensive care for 4 days and I was given my last rights. I surprised everybody

[empirerecs]

I was on Gilenya for about 6 weeks and had a terrible side effect. My immune system went to "0", liver enzymes were 1700, had 104 fever , throwing up, couldn't walk and had about 4 infections. I was in intensive care for 4 days and I was given my last rights. I surprised everybody

OMG Puffin, how horrifying. I'm glad you surprised everyone too and are doing better.

Did they link that directly to the Gilenya? What are you taking now, if anything? I'm guessing they didn't want you on anything right after that experience.

thank you for the information and really glad you are doing better.

[MSGrl]

Have been on Gilenya for 4+ yrs

I started with the Gilenya study and now have been prescribed the actual Gilenya since day one. I will say that for me it was my only option, I had become allergic to all the meds like Rebif, Beta Seron, Copaxone, etc. My latest MRI shows only 1 new lesion in my brain in the past 4 yrs. Prior to this I had 30+ lesions & felt like it was going downhill. I have had a few minor relapses in the years I have been on the drug, but nothing like I had been experiencing or even close to it.

I will say, if anyone is going to have a weird reaction or some odd thing from meds it seems like it is me. In the past year or so I did end up getting a rare stomach thing called Typhlitis, which was painful & can be very serious. I am sure that this was not reported as a side effect, it happened about 3-4 months prior to the meds release to the general public. After research on how I got it, it all leads back to the Gilenya. This year I also ended up getting Gout in my foot, again with research done mainly on my end, then confirmed through Dr's, it is linked to the Gilenya, again which I am sure is nowhere documented.

This week I found out that I am positive for the JC Virus, which makes me very nervous with taking Gilenya, but then again with no other options out there I most likely will take the risk & stay on it since I am doing better with my MS then ever before. I am not sure if this helps you or anyone else, but I would say to really do your research, especially if you are on it & things start coming up that are not on the "side effect" list of the drug. Good luck to everyone, and like I said earlier, for me Gilenya has been great for my MS, the side effects though I could live without.

***Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.***

[04blackcobra]

I have been on Gilenya for 7 months and no improvement in any symptoms

[Bandito]

I have been on Gilenya not quite nine months, since Feb 2011. I can tell you with 100% certainty that, not only have I not experienced any side effects, but I have had a complete turnaround in my MS since getting off of Avonex and starting Gilenya. The disease has been major quiet since starting Gilenya. I go back to the clinic on Nov 1 for a checkup and then we'll be scheduling the MRI to get an actual picture of the results.

[brianm]

Gilenya

I have been on Gilenya since Jan. 2011. Going on a year and am very happy with the way I feel. It is working, I can feel it, ms is not getting in the way right now. I pray it stays away for along time. I also have had no side effects

[BigA]

This week I found out that I am positive for the JC Virus, which makes me very nervous with taking Gilenya, but then again with no other options out there I most likely will take the risk & stay on it since I am doing better with my MS then ever before. I am not sure if this helps you or anyone else, but I would say to really do your research, especially if you are on it & things start coming up that are not on the "side effect" list of the drug. Good luck to everyone, and like I said earlier, for me Gilenya has been great for my MS, the side effects though I could live without.

Many, many people carry the JC virus. Why did you have yourself tested anyway? Are you considering tysabri?

[Thomgirl]

Stomach pain and nausea after stopping G

Wow, I'm so glad everything is OK. I've never heard of Typhlitis. I was on G for 9 mos and last week, I skipped a meal. Well, after that, my stomach began to hurt (it had done this every time I may have skipped a meal). I hated that reaction so I stopped the G (it also caused me hypertension). I began to feel nauseous after I stopped G. Today is day 8 and not quite 100% but getting there every day. I don't know why G caused my stomach to act this way after stopping it but it's been a miserable experience and I'm glad I'm off of it. FYI- G has a Terminal Half-Life (when you stop the drug) of 6-9 days. So, most of it remains in your body for over a week after you stop it. I look forward to starting back on Betaseron. At least I know what to expect with that drug.

I started with the Gilenya study and now have been prescribed the actual Gilenya since day one. I will say that for me it was my only option, I had become allergic to all the meds like Rebif, Beta Seron, Copaxone, etc. My latest MRI shows only 1 new lesion in my brain in the past 4 yrs. Prior to this I had 30+ lesions & felt like it was going downhill. I have had a few minor relapses in the years I have been on the drug, but nothing like I had been experiencing or even close to it.

I will say, if anyone is going to have a weird reaction or some odd thing from meds it seems like it is me. In the past year or so I did end up getting a rare stomach thing called Typhlitis, which was painful & can be very serious. I am sure that this was not reported as a side effect, it happened about 3-4 months prior to the meds release to the general public. After research on how I got it, it all leads back to the Gilenya. This year I also ended up getting Gout in my foot, again with research done mainly on my end, then confirmed through Dr's, it is linked to the Gilenya, again which I am sure is nowhere documented.

This week I found out that I am positive for the JC Virus, which makes me very nervous with taking Gilenya, but then again with no other options out there I most likely will take the risk & stay on it since I am doing better with my MS then ever before. I am not sure if this helps you or anyone else, but I would say to really do your research, especially if you are on it & things start coming up that are not on the "side effect" list of the drug. Good luck to everyone, and like I said earlier, for me Gilenya has been great for my MS, the side effects though I could live without.

***Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.***

[kelm10]

JVC??

This week I found out that I am positive for the JC Virus, which makes me very nervous with taking Gilenya, but then again with no other options out there I most likely will take the risk & stay on it since I am doing better with my MS then ever before. I am not sure if this helps you or anyone else, but I would say to really do your research, especially if you are on it & things start coming up that are not on the "side effect" list of the drug. Good luck to everyone, and like I said earlier, for me Gilenya has been great for my MS, the side effects though I could live without.

This was originally posted earlier in the post. Have never heard of JVC being a factor with Gylina and did not see anything in research or the literature. So, I hope that this is clarified before someone takes it farther.

Mary