Ok, so its getting closer to the start of my 3rd & hopefully final med for my MS. I got my 2 week starter kit today, and going to go to my neurologist on monday to start. I am a little nervous about it being a brand new medicine, but yet so excited about not doing the injectables anymore! I already got my eyes checked, and my MRI is tomorrow, so thats all out of way. How wonderful would it be just to take a pill everyday instead of dealing with the "hot spots" and lumps caused by the Copaxone & Beta Seron i was on??!!! We'll see!!!
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Good luck with everything! I've been in the trial since March 07 and have done very well with it. No side effects, no changes in MRI and no major flares. I'm one of those "lucky" people who had reactions to the shots, Tried 3 out of 4 with no luck so the pill has been a Godsend for me. And yes, it is so easy just to take that little pill! I sincerely hope it can help many MS patients. It's so nice to have options now and more to come! -
Hey Dre,
I will also be starting next week on the Gilenya & I cannot wait! I've gone through Avonex, IVIG, Cellcept, Tysabri (for 2 years) & numerous occasions of IV Solumedrol. Enough of that being a pin cushion... It's about time we finally have a hopefully decent oral med to take. Good luck with yours !!
.....Mike
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GOOD LUCK WITH IT! I AM GOING TO SEE MY NEUROLOGIST ON THE 9TH ABOUT STARTING IT. I AM VERY NERVOUS ABOUT THE POSSIBLE SIDE EFFECTS BUT HOPEFUL IT WILL WORK FOR ALL OF US. I, TOO, HAVE TRIED AVONEX, COPAXONE, SOLUMEDROL AND IVIG WITH NO LUCK. GOOD LUCK, DRE!
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afraid to change meds.
I passionately hate injecting myself 3x/wk, I am on Rebif. My legs have developed scar tissue. I have been following the study for Gilenya If I have to be on meds to slow the progression for RRMS I would prefer it in pill form.
However I have been doing very well on Rebif. I was diagnosed in sept of 2009. I have been on rebif ever since. I too had numerous IV infusions over the past year.
My last MRI showed no changes so no new lesions. I have not had side effects that were unbearable.
I am afraid to start something new while I have learned so much about Rebif and am not having a bad reaction to it at all. I have not had any relapses in the past year.
I just really hate the injections.
were any of you afraid to change meds? Did your neuro's agree immediately to allowing the change from shots to pill form?Comment
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hey Dre73
What did you switch from to the Gilenya? Did you do a wash out period? If so how long?
Thanks and GL!!!!! Please keep us posted. I see another Neurologist 12-14-10 to see about switching from Tysabri to Glienya.Comment
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My last Tysabri infusion was in May of 2010 cuz my 2 year mark was up. Waited then for Rituxan approval through insurance but that never happened. Just finally got approved for Gilenya and have had no MS drug in my system except for some Solumedrol...Hey fina66...no, I am not afraid to start a new drug, especially since each one I have been on did not continue to work. If injections bother you, dont be afraid to change... I start Gilenya tomorrow......Mike
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Keep us post mike on how you do with the Gilenya!!Comment
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Had first dose today...sat for the 6 hours without any drop in my heart rate (as they say some may experience). I feel good with no side effects at all. Left with the remaining 13 pills in the starter pack. Sure do hope this will be THE med I can stay with for a long time...My Rx plan is also great (Medco)... only going to be $40 out of pocket for 90 day supply. Can't bark at that...
...Will keep you all posted on how it goes.......Mike
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allright!! keep us postedComment
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Anyone - how long did it take from first form completion, to starting Gilenya? My form was faxed 11/15, received a couple of letters about financial assistance from Novartis, but still waiting for THE ca1KL1ll from the nurse.Comment
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PS -That should have been received the "call" from the nurse. Got a new kitten which walked across my keyboard as I was finishing up my question.Comment
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No more Rebif!! I hope . .
I have been injecting for over 10 years. I have never been so excited to take a med. I am so over the scar tissue I have. I have just finished all my pre testing appointments and will be taking my first pill at the end of December, yahoo!!!Comment
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scnick, just pick up the phone and call her, I promise she will say she was just about to call you!Comment
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Originally posted by Karyn View Post
Hi how did you get the med. my insurance company does not have it listed yet and my Neuro Doc would like to put me on it.
Thanks,
HughComment
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