I need input on which pill to try...

[jfraelich]

I was recently diagnosed with MS (3 weeks ago tomorrow), and my neuro gave me information on Gilenya and on Tecfidera. I am leaning towards taking the Tecfidera, but I wanted to see if anyone had any input on which they feel is the better route to take?

Thank you for your help!!

Jessica

[kate8103]

I was just put on Gilenya after being on Copaxone for almost 3 years. While Tecfidera was my first choice, my neuro basically made the decision for me because she felt more comfortable with Gilenya being out on the market longer. So far so good. I have been on for a week and haven't had any issues. Good luck!

[cavalier80]

Similar Issue

I'm glad I stumbled on this thread (and really sorry I don't have advice to give you) since I face a similar decision point. I was diagnosed in 2000; took Copaxone for years; Tysabri the last 3+ years; then my last labs came back JCV positive, so it's goodbye Ty, hello Gilenya or Tecfidera. Which to take? The Tec G.I. side effects are troubling, but so are the G heart, liver enzyme, macular edema. (Isn't this fun?) So I'm looking for some opinions/advice on where to go next.
Any help welcome (and, again, sorry for being a freeloader on the initial question.)

[bree2013]

I was recently diagnosed with MS (3 weeks ago tomorrow), and my neuro gave me information on Gilenya and on Tecfidera. I am leaning towards taking the Tecfidera, but I wanted to see if anyone had any input on which they feel is the better route to take?

Thank you for your help!!

Jessica

jfraelich & cavalier: The only experience I have is with Tecfidera. I have been on it approx one month now.

For me, the side effects have been very minimal: flushing perhaps a total of 5x & I did experience stomach upset (burning) perhaps twice. I hadn't taken the pill with food and/or I did not drink enough throughout the day.

Hopefully others who have switched therapies, can give you insight.

Good luck,
Bree

[goblue]

I'm also in the same boat and have to decide soon on what to take. Ive been to several of the meetings put on by the various drug companies and the general consensus seems to be that the orals are more of a 2nd step therapy vs. The injectables.
Ive asked several of the neuro's this and most say they prescribe the orals more as 2nd step after the others have not worked.
I would also like to take the orals because I hate needles, but am also unsure.

[Tracelyn]

I too face this choice. I go see my Neuro on Wed and we are talking oral meds since I have been on Avonex for the past 2 years.

She seems to be more comfortable with Gilenya as well.


I of course have concerns since I do have high blood pressure etc.

[Tracelyn]

I met with my doctor last week and discussed me switching meds.

She told me of my options, Tecfedera, Ambugio and Gilenya. I have opted to go with Gilneya, provided my labs and ekg come back good.

I have my tests on Friday to see if it is a good fit.

[lindagail]

Gilenya users

I have been on copaxone for 3 years. I have no places left to inject. The drug has destroyed all my fat and, although that sounds nice, it has really mutilated me in some respects. I am thinking about gilenya. Can anyone tell me what is was like taking the first dose and any tests done before that? The information about monitoring for 6 hours and heart problems really scares me. I am distraught over this whole thing and need some good feedback to take to my doctor. Thanks for any information you can give.

[jasstorm]

same boat

I was diagnosed in 2008 and have been on rebif, avenox and copaxone, had servere side effects and finally ran out of injection spots. Stopped dmd's about 3 years ago. In middle of my first flare up in 2 years. Just had mri shows new active lesion on my spine. Deciding between Gilenya and tacifidera. Like that tac has less side effects but it hasn't even been out a year so that makes me nervous. ANy input would be great.

[Goldfinch]

I have been on copaxone for 3 years. I have no places left to inject. The drug has destroyed all my fat and, although that sounds nice, it has really mutilated me in some respects. I am thinking about gilenya. Can anyone tell me what is was like taking the first dose and any tests done before that? The information about monitoring for 6 hours and heart problems really scares me. I am distraught over this whole thing and need some good feedback to take to my doctor. Thanks for any information you can give.

Linda, Don't be distraught. We're lucky ot have options these days. Every thing is a toss up between pros and cons. I started Gilenya after blood tests said I was JC+ beyond the threshold and time span for safety on Tysabri (72 infusions). I was concerned about switching as well since the Tysabri worked SO well for me. No new lesions, no relapses...

I went on Gilenya about 2 weeks ago and frankly I never noticed feeling any differently during the observation on my first dose. My pulse never dropped more than 9 beats per minute and then only twice. I didn't feel different, and I didn't even get dizzy getting up and walking around.

So far, so good. I've heard of folks having headaches or hair loss, and frankly, I've been watching for hair loss but I don't seem to be losing any more than normal, hairballs in the shower drain notwithstanding. No headaches either.

Good luck and relax. Until you have evidence, worry is a waste of energy.

[Marco]

I responded to a similar question here:
http://msworld.org/forum/showthread.php?t=130386


Thank you...

[Shiranova2003]

Gilenya now... after Copaxone

Hi - my name is Tracy - diagnosed in 2008 had to change to Gilenya in Aug 2013 as it was a toss up but I went for the 'safer' drug. I have had hair loss - it seems to have slowed down or stabilized and no weight gain experienced.

Any other questions about Gilenya please email me back.