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Hi from East Texas!
farside_fan posted:
Hello Fellow MSers! I've been on Avonex since 1996 and STILL have side effects that can be miserable at times. I'm thinking about switching to Gilenya (fingolimod) in the future (no injections!!!) and would like to hear of anyone's feedback on the subject.

I haven't discussed anything with my neuro yet but I'm trying to understand the pros and cons of the possible switch in therapy. Most likely, my neuro will tell me...."don't fix it if it ain't broke" so any feedback appreciated.

A year ago, my neuro decided I might have CIS - Clinical Isolated Syndrome when I was DXed in 1996 with relapsing remitting MS......but also said I most definitely have MS, even though I've never had a problem since day of DX and have stayed on Avonex every week....except for the past 6 months.

Any feedback available? I'm so sick of the weekly injections and pills sound so much better! Am I stepping from the pan into the fire?

nana2el responded:
Hi farside_fan,

I take Gilenya and have since April of last year. I haven't had any side effects to speak of except some appetite loss at the beginning. However, my lymphocyte count got really low and had to go to every other day dosing. Now am back on every day.

Gilenya is my first treatment so I don't have anything to compare it with like you would. My disease is quite active and am not completely controlled at this time. So, the jury is still out on how effective it is going to be for me. Tysabri is now on the table.

The screening and first dose observation that is required was not a big deal for me. Everything went fine.

I would much prefer taking a pill over a shot as I am sure anyone would. Consult with your MS doctor and insurance company to see if it is an option for you. If it is, Novartis offers copay assistance of up to $12,000 a year.

Good luck!

Sandra From Southeast Tennessee

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