Gilenya... no side effects at all... anyone else?

[Elliejah]

I writing this because my fears about this drug were deteriorated quickly after taking it.

I felt top notch taking it in the hospital... the only reason I didn't go out partying that night was to make sure the ol' ticker was fine. I was out with my friends the next night. No problems.

I have no weakness, no vision problems, no hair loss, no fatigue, no weight gain. I'm able to upkeep my 4-6hrs of cardio/weights per week, maintain a non processed food diet and can keep up with the boys when it coms to the weekend time.

I forget that I'm on this pill sometimes because my side effects are so non existent.

I know I had this question before taking it because I am a socially active guy who's not going to give up his social life... "Can you drink alcohol on Gilenya?" ... Yes, I do it often and feel fine. I don't do it more than 1-2x per week, so if you're on it more than that, not sure.

I haven't had any erectile disfunction at all, and according to the numerous doctors I consult with in Canada, Australia and the U.S... it's not going to sterilize me.

Bottom line; I've been able to lead a normal unchanged life on this, wishing people luck who haven't had the same results.

Although my symptoms haven't improved, they haven't worsened and stopped me from doing anything else.

Will be happy to answer any questions anyone has.


-Cheers

[Cardee]

Quite happy to read your post. I will take my first pill next week and hope I'll be able to write something like that, except for the erectile part, as I don't have anything to erect ;-)

[snowy]

Hi,
In January when I saw my neuro's PA he talked to me about Gilenya. The RN came into talk to me about Gilenya while I was having Steroids and she gave me the info packet on the drug. I see the Neuro next week. Not sure what he will say. He mentioned BG-12 to me when I saw him last yr. Question for those on the Gilenya. How long did it take for you to have all the tests done and then start Gilenya?
Thanks

[acomiskey]

I've been on Gilenya for 6 months and so thankful I don't have to be a pin cushion any more. No side effects that I've noticed. I had awful site reactions with the Copaxone.

I go back for 6 mo check up later this month. Already did my eye test, everything fine. have to get my EKG.

as far as how long it took to get onto Gilenya. I got word of being approved July 8 and started Aug 2. My doc was really fast getting the request to wherever it needs to go. I got my eye test and EKG. Then was told I had to be off my Copaxone to get it out of my system. Everything else was all set. I swear as soon as that was past I was in the office for the first pill.
No more than 2 mos from Dr saying lets try to get and and it being in my system and that is with waiting the extra time for the Copaxone to get out of me.

[snowy]

Acomiskey,
Thank you for the information. I am anxious for my appointment next week. I am wondering if he will go with what the PA told me and recommend Gilenya.

[Gorman]

3 Pills down and am in hopes several years to go

Been on shots since 2000, Copaxone for 10 years and Rebif for 2. Stopped cold turkey to begin Gilenya Friday, March 9, 2012. So far, so good. Feel the same......experienced -0- side effects.

Went to Gilenya presentation in Urbana, IL. They can't advertise I guess because of HIPA laws or laws of some kind. Weren't but a hand full there.....

Word is getting out as this is becoming the treatment of choice.

If I were asked, I would say, "Go for it."

[snowy]

Gorman,
Glad you didn't have any side affects on Gilenya. Can I ask why you switched to Gilenya?
That's what I am thinking,, if I am asked if I want Gilenya I would probably say yes. I am out of options at this point.
One question I have is if you don't have any heart issues before starting Gilenya can cause problems while on it?
That is one question I have for the neuro on Thursday.
Thanks,

[CGMoonbeam]

No side effects here either--a little more spasticity, but not to the point that I would stop taking it.

[Katie626]

It's always nice to read positive things about Gilenya! I started on Gilenya several months ago. This is treatment #5 for me. I've had one flare up since starting but my doctor wants to give it a little more time (or another flare up) before moving to treatment #6. I just love the needless approach to treating the MS LOL! But if this ends up not working then it's on to Tysabri or Campath (if it's approved by that point). Apparently Gilenya is supposed to be one of the stronger treatments for RRMS so I'm keeping my fingers crossed.

[MemphisSlim]

Glad to hear some good news! ..and a question for all

I am due to start Gilenya soon, and was almost going to cancel after reading about all the negative side effects.

My question is - are most people who have no problem with Gilenya NOT posting? I work at a call center, and since it is a help desk, we only hear the "bad" about our product.

People do not call to say "Gee, this product is great!"

Is that the case here or are most people using Gilenya having bad experiences??

[Arthur Spooner]

I can only speak for myself, but I have been on Gilenya since only January and have nothing negative to say about it.

I can't prove it is working, but I do not experience any negative side effects. My condition remains stable.

[snminnow]

I was part of the fingolimod clinical trial, and have continued on the medication since the FDA approved it last year. I haven't ever experienced any side effects while taking Gilenya and have been relapse free since November 2008.

[Leeaura]

No side effects here either....

Just wanted to add my 2 cents...

I was diagnosed on my 48 birthday, March 2, 2012. Dr insisted he preferred to start me on Gilenya. Said he did not see many ugly side effects among his patients...most were satisfied.

I took my first dose mid April. At this point, I feel great. Maybe even a little more energy than before!

Anxious to hear how others are doing.