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Tecfidera vs. Gilenya
michellepz posted:
Hi. I have been told by my neurologist that I should change my meds. from Avonex to either Tecfidera or Gilenya. I'm researching the two and wanted any feedback about these medications to help me make the best decision/choice. Thanks for your help!!!
nana2el responded:
Hi Michellepz,

I have been taking Gilenya for 2 months and so far so good. Gilenya is the first and only MS drug I have taken, so I can't make any comparisons to any of the other drugs. My neuro, who is an MS specialist said it would be the drug he would take.

Since cost was a factor, and I was treatment naive, I was able to enroll in a study that is comparing injectables with Gilenya on the chance that I could get Gilenya.

You probably already know that you have to stay at doctor's office for the day to have BP and heart rate checked every hour. It went by really fast as my husband was there to keep me company and I met other patients who were there for various other treatments.

My heart rate dropped some there and for about a week or so after that. But no big deal. The only other thing I noticed was a loss of appetite (sometimes that's not a bad thing) for about a month and a little bit of hair thinning.

I have had some good days lately so hopefully it is helping. Maybe some other folks on here who have been taking it longer will weigh in as well.

Good luck!

neverquit7 responded:
I have been on Gilenya for almost 2 yrs. Before that I was on copaxone and then rebif. I had awful side effects with both types of injections. With the gilenya the first week or so was a little rough, meaning switching caused a relapse, but after that has been great. I went from multiple relapses p/year to hardly anything. I feel better than I have in years. Hope this helps
kathy48334 responded:
I was on Avonex for 8 years with only 3 major attacks until Sept 2012. I am now on Tecfidera. I could not take Gilenya because of my eye and heart condition
One pill twice a day 12 hours apart. I am doing fine with it. Been on it since April 2013 . No new attacks. Eye has improved.
baseballmom13 responded:
I have been on every ABC injectable with no luck. had 6 mos of Novantrone that put me in remission(maxed out at 6 doses), and then Gilenya. Have been on it for 2 years now and all is stable. I have had no relapses and live a normal life and though walking shorter distances, it's better than it not working at all. Haven't tried anything new as the Gilenya seems to be doing me fine....I only take once in the morning and never had any side effects nor low blood pressure. I guess I'm of the mind that if it aint broke, don't fix it.. my neuro said that gilyena had had the far better success rate...hope this helps
thefurryfour responded:
Hi Michelle - I had taken Avonex for 12 months. I ended up stopping that because of liver enyzmes. I went on Copaxone for 4 years, then my husband took a buy out from Jeep. I ended up quitting because it was too expensive. I took Tecfidera for 3 weeks. I had very bad reactions. I am not taking anything but muscle relaxors right now.
kim1962 responded:
HI wanted to let you know I am on my second month of teciferdra. When I first started alot of flushing I would take a half of benedryle with it and eat some peanut butter to help with the stomache. Now on my second month the flushing is not near as often and I dont take anything for the side effects. So for me it has worked quite well. Hope this helped you and good luck with whatever you decide to go with.
murphbuzzy responded:
Hi Michelle, I have been on Gilenya now going on my 5th yr I believe. I'm in a continued study of it to watch for long term effects if any. Had started a 2 yr study, found out at the end of that study I had been on the actual drug and not a placebo. Thank goodness. So now, been on the continued 3 yr study.

I believe I can say it's working in that I haven't had any relapses. If so they have had to be small ones. I'm walking further than before. Live by the beach now, so that helps with the mind.

I started on Avonex back after I was diagnosed in 1996, for 7 yrs, then Rebif for 1 yr. Now on Gilenya. So far so good. Going Feb 10 for a 6 mon. check with study, hopefully and MRI to see whats going on.

Good luck!

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