Any Gilenya tips?

[Camcojo]

Starting Gilenya in a couple weeks and was wondering if any of you that already started, or been in the trials, have any tips to make things easier. Is there a certain time of day to take the Gilenya that makes side effects easier to deal with? I'm currently on Rebif and always take it in the evenings to sleep through the worst of the side effects. I always take the Rebif around the same time of day. Does that matter with Gilenya?

Any tips or suggestions would be appreciated.

[snminnow]

I started the Gilenya clinical trial March 2009, and recently started the medication through my own pharmacy now that it's FDA approved..... I have never had any noticeable side affects. I take it in the evening, when I take all of my other meds (vitamin, ambien). I keep them all on my nightstand, so it's convient to 'pop' a few pills before bed I think you should just start off taking them a the most convient time for you initially, and if you find that it causes any side affects for you then adjust accordingly.

I'm excited for you, and I hope that this medication works well for you. Best of luck, and keep us all posted on your progress!

[upennam1]

I've been on Gilenya for only 3 weeks. The first few days were a little rough. I had a headache and felt a litte nauseous. For me, it was just my body getting used to it. I don't have any side effects to speak of from it. My body seems to tolerate it very well. I was on Rebiff for over a year and had awful side effects. I felt like I was on a year round flu train with red welts all over me. I stopped taking it a year ago. It seemed to me that the disease was looking better than the drugs. Compared to Rebiff, Gilyena is the next best thing to sliced bread. After seeing the results from clinical trials I couldn't see not taking it. I take mine in the morning with my other meds. Not because I have to but because it's just easier for me. Another great thing is Novartis the drug company. As I'm sure you have, I dealt with MS Lifelines on the Rebiff. Novartis has something similar. Its the Gilenya Support Program. You'll get a Nurse Navigator assigned to you. My navigator is fantastic. It has really made the journey so much easier.
I hope all works well for you and you have all of the success in the world with the medicine!!!

[Cindarelly]

I don't have any tips, just wanted to let you know your not alone. I am headed down the track with you.
Probably in Dec

[Camcojo]

Thanks guys for your replies. ShellyTX, hope all goes well for you and we'll have to compare notes as we go down this track.

[Cindarelly]

I just had my big blood draw for vcv anti bodies and white count and liver stuff.
Lots of vials there.
Next ekg and eye stuff. My appt are not until Dec.
So you may get ahead of me.. Lots of viruses going around here. I hope I don't get anything that sets me back.
So far so good.........I live about 75 miles from dr's
That is a problem and getting appt too.
I am ready though

[Matt]

I was dx'ed in Feb '10 and have been on Copaxone. I have had new lesions both of my MRI's since then and my Dr. said to either go to Tysabri or Gilenya...I chose Gilenya. I'm done with the shots! My presreening exams start next Friday.

[kingseth2]

I've been on Gilenya for only 3 weeks. The first few days were a little rough. I had a headache and felt a little nauseous. For me, it was just my body getting used to it. I don't have any side effects to speak of from it. My body seems to tolerate it very well. I was on Rebif for over a year and had awful side effects.

Hey Camcojo,

Just wanted to echo the quote above. I've also been on Gilenya for 2.5 weeks, and had the exact same experience. By the end of week one, it was like popping a vitamin. Waaay different than 4.5 years of the Avonex flu!!

Hope this works out for everyone!

[dre73]

Great reading all this info!! Starting mon the 29th!! I agree, hate those "flu like" symptoms, cant wait to be free of them!! Thanks guys!!

[Ebet]

Thanks so much for these posts. I have taken the first three doses and was getting discouraged by headache, nausea and loss of appetite. I am going to stick with it and I think it will get better soon, based on what I read above. Thanks a million for the reassurance!!!

[CrazyCatLady]

As of today I took my 5th dose of Gilenya. I get a headache too but some OTC meds helped that go away. Had really mild upset stomach too but nothing I couldn't ignore and it just passed. I right now take my Gilenya in the morning with other meds I take. I am going to move it to the night time with some other meds I take (LOL) to try to avoid the upset stomach. I will see how that goes. Either way, it is so much better then the injection side effects!!