WANT FEED BACK PLEASE

[ccsitter]

BEEN ON REBIF AND IV SOLUMIDROL SINCE 2003 NEURO IS ARRANGING FOR ME TO BE IN THE GILENYA TRIALS IS THERE ANYTHING I SHOULD KNOW OR I SHOULD SAY BE WORRIED ABOUT ?

[newbie but goodie]

What is the trial about? I'm just curious because Gilenya is already in use/approved/for sale. Im interested to know what they are testing.

In any med study I would want to know if there is a chance I could get a placebo. Since G is already approved for use the safety and use information is already available so I would suggest becoming familiar with it.

[ccsitter]

reply for newbie

I would assume the trial is because the ms clinic I go to has not used gilenya before now. My neuro said it is a one year trial but I will ask her. Thank you for your response

[ccsitter]

reply for newbie

Looked up trials in my area for gilenya and there is one going on in my town. It is a comparitive study of gilenya and copaxone.

Not sure which one I will end up on but my neuro is pushing the gilenya as she knows me to well. I don't like shots and almost 10 years of infusions I am ready for a pill.

Wish me luck and pray I get the pill. Again thank you for your response to my earlier thread.

God bless take care

[newbie but goodie]

Interesting! Well good luck and hopefully you get a break from infusions/shots.

[Tracelyn]

I read the other day there is a trial with G using a lower dosage for effectiveness.

My neuro is not a part of the trial otherwise I would likely volunteer.

Of course I am still waiting to take my first dose. I have 7 more weeks before I take it.

[Campingirl]

Gilenya vs. Copaxone trial

ccsitter, my Neuro also recommended the same trial for me. I was on Avonex for 2 1/2 years and was sick of the side effects and taking shots. I too really hope I get Gilenya instead of Copaxone. I asked him if there was any way he could some how get me on Gilenya instead of Copaxone and he said no. You are randomly assigned and have a 50/50 chance of being put on either drug.
Hopefully you and I both get the pill

[Merridy]

Convert here

Rebif convert here, and would NEVER go back. Zero side effects for me, and feel so much better. Started running last year, and ran a half marathon in May and #2 scheduled in 2 wks.

Gilenya erased the needle anxiety and pain. I truly hope you get the pill. I'm happy for my decision, but I recommend you do your homework so you go in eyes wide open to potential risks.

[ccsitter]

Thank you everyone

I want to thank everyone for the input I really appreciate it more than you know.

The trial is g verses copax. and there is a 1 in 3 chance I would be put on the copaxone.

Keeping my fingers crossed praying a lot and hoping for the best, rebif not working anymore progressing.

Thank you God Bless love and hugs to all.