Be patient with Gilenya...

[RainbowMom]

I've been taking Gilenya for nearly 3 years through the Gilenya clinical trial. I was fearful and very hesitant to start, but it has done wonders for me with few side effects and I had few options left. I just wanted to encourage those of you who are starting Gilenya to be patient with it. Most of the side effects will go away in time and it seems to work slowly. I don't tolerate drugs well, yet this has not only agreed with me but has helped with my MS issues in many ways. It certainly isn't a cure, but I have definitely felt improvement and hope to continue to benefit from it. Good luck to all of you just getting started on it. I know everyone is different, but from my own experience, be patient and the side effects will ease up and you will start to see results.

P.S. There is a Gilenya Facebook page where patients discuss their results if that might be helpful to anyone. Just type "Gilenya" in the search box.

[zenbufon]

gilenya PPMS?

Hi There

Good news for you! Hope you get better and better and better...

Your type of EM is PPMS? Mine is.
Is it any indications so far, that Gilenya works on PPMS?

thanks a lot

[Miss Kate]

thank you so much for sharing this rainbowmom. I am possibly going to be starting Gilenya in a few weeks and have been a little nervous about it. Hearing your positivity about the drug is very comforting. I am so happy to hear that you are doing well on it as I don't have very many options left myself. Thank you so much again for your post, many hugs to you and best wishes that you continue to do well..

[jmm9503]

Thanks for the words of encouragement. I stopped Gilenya after 18 days because of the side effects. I restarted after my MD suggested that I give it another try. I am now on day 21, and for me it has not been an easy start. I'm in a lot more pain and the fatigue is difficult to deal with. Thanks for the pep talk-I am going to keep taking it!

[CrazyCatLady]

Dec 14th

I have been on Gilenya since De 14th. Doing great so far. I have pretty active MS and if not for Gilenya I would be on Tysabri right now, not that there is anything wrong with that but to me I guess the more drugs left to try the better. Does that make any sense??

It just feels odd that every night before bed a take a little white and yellow capsule and that should help my MS. Where is the needle, alcohol swab, sharps box, and Pain? How can this little capsule help my MS? Crazy....

[RainbowMom]

Hi There

Good news for you! Hope you get better and better and better...

Your type of EM is PPMS? Mine is.
Is it any indications so far, that Gilenya works on PPMS?

thanks a lot

Mine is RRMS but studies are also being done for PPMS.

[zenbufon]

Thanks for the reply Rainbow Mom


Anyone with PPMS have results by using Gilenya?

Good Luck to all!

[evilene1978]

SIDE EFFECTS

SORRY TO BRING THE GROUP DOWN, BUT I'VE BEEN HAVING WEAKNESS, APPETITE LOSS AND SOME AGITATION (ALTHOUGHT THAT MAY BE FROM BEING COOPED UP FROM THE COLD). DOES ANYONE KNOW IF THESE WILL PASS EVENTUALLY? I'M SO TIRED OF NEEDLES, AS I'M SURE MOST OF US ARE, I DON'T WANT TO GO BACK IF I CAN HELP IT.

EVILENE1978

[CrazyCatLady]

SORRY TO BRING THE GROUP DOWN, BUT I'VE BEEN HAVING WEAKNESS, APPETITE LOSS AND SOME AGITATION (ALTHOUGHT THAT MAY BE FROM BEING COOPED UP FROM THE COLD). DOES ANYONE KNOW IF THESE WILL PASS EVENTUALLY? I'M SO TIRED OF NEEDLES, AS I'M SURE MOST OF US ARE, I DON'T WANT TO GO BACK IF I CAN HELP IT.

EVILENE1978

How long have you been on Gilenya?

[evilene1978]

Side Effects

ONLY FOR ABOUT 2 WEEKS, BUT THE APPETITE THING IS KILLING ME LOL - I JUST WANTED TO KNOW IF IT WAS NORMAL - APPARENTLY OTHERS HAVE BEEN EXPERIENCING FATIGUE AND WEAKNESS, BUT I HAVEN'T SEEN MENTION OF THE APPETITE, EXCEPT IN THE MEDICINE INSERT, AND I CAN'T GET MY DOCTOR TO CALL ME BACK AND TALK TO ME ABOUT IT.

[jmm9503]

Eviline-I did not have the loss of appetite from the Gilenya but I did have the other side effects that you mentioned along with the sensation of breathing issues. I stopped Gilenya the first time at day 16 (I think) because of them. I went on to re-start secondary to my MD urging me to. I did experience the side effects again at the second week but decided to continue on the Gilenya. By the end of the 3rd week all of my side effects had stopped. 2/13/11 will be one month since I restarted th Gilenya and I'm happy that I pushed through the issues and today am feeling good!

[mike1963]

Wow...I guess I am lucky and have been lucky with every med I have ever been on since I was diagnosed in 2002. Had NO side effects at all...from Avonex, to cellcept, to IVIG, to solumedrol, to Tysabri and now to Gilenya (3 months now)...count my blessings ... wish ev1 had my luck.........mike

[redbreast21]

Last Med

Hi There

Good news for you! Hope you get better and better and better...

Your type of EM is PPMS? Mine is.
Is it any indications so far, that Gilenya works on PPMS?

thanks a lot

So thankful to find this thread. I am getting ready to start Gilenya. I have SPMS. Just getting off Rebiff that left me with a very rare arterial ocular occlusion in other words a stroke to my right eye that has left that eye blind. I have been on Avonex, Copaxon, Betaseron, monthly Solumedrol the only thing left is Tysabry and Gilenya my doc said Novantrone and Tysabry are to dangerous for me. So Gilenya here I go and from the feed back I see here it is a Thanks to all of you and good luck

[SFPat]

Facebook privacy

I've been taking Gilenya for nearly 3 years through the Gilenya clinical trial. I was fearful and very hesitant to start, but it has done wonders for me with few side effects and I had few options left. I just wanted to encourage those of you who are starting Gilenya to be patient with it. Most of the side effects will go away in time and it seems to work slowly. I don't tolerate drugs well, yet this has not only agreed with me but has helped with my MS issues in many ways. It certainly isn't a cure, but I have definitely felt improvement and hope to continue to benefit from it. Good luck to all of you just getting started on it. I know everyone is different, but from my own experience, be patient and the side effects will ease up and you will start to see results.

P.S. There is a Gilenya Facebook page where patients discuss their results if that might be helpful to anyone. Just type "Gilenya" in the search box.

Thanks Rainbow mom for the info. I am brand new to Gilenya, just started it 3 days ago. So far so good, can't tell any difference being on G. I am interested in supprt groups who can answer questions that I have. For instance, is it better to stay off alcohol for 6 weeks, until elevated liver levels even out?

I love the idea of a Facebook group, but wondering if it is truly private. Since I have only told some of my friends and noen or my co-workers, I'm wondering if it shows up a "Pat just joined GILENYA group" or something else equally as telling?

[jinpa]

I have been on G for about 6 weeks and can't stand it. Does the headache and fatique ever go away? I really don't know if I can stay on this drug.