Would anyone mind giving me some feedback?

A board to discuss the Multiple Sclerosis modifying drug Avonex

Would anyone mind giving me some feedback?

Postby cathyb » Thu Jan 06, 2011 8:08 pm

I was on Avonex for years starting in 1997(?) ending in 2006 because I wanted to have a baby. Being on Avonex kindof sucked, but not THAT bad (I was expecting to be down for the count all week, but it was typically only the night of injection). Now, after having my second child, I am back to seeing a neuro. She really, REALLY wants me back on Avonex, and I really REALLY don't want to do it. My reasons are:

1. Don't want needles around the kids
2. Don't want to think about what this may be doing to my immune system (I kinda need my immune system)
3. I REALLY hate injecting.
4. Side effects (I stay home with the kids, I'm lucky if I get 7 hours of sleep nightly as it is, I can't have flu like symptoms, there isn't anyone to watch them if I'm sick.)

My neuro is acting like I am being completely irresponsible by not wanting to go back on this drug. Anyone have any thoughts to share or opinions? I really REALLY don't want this drug in my life any more.

Thanks, all.
Cathy
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Postby Loriyas » Fri Jan 07, 2011 10:07 am

Cathy
I just had an appointment with my neuro and she told me she has some patients starting Gilenya, which is the first oral medication. May be worth looking into???
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Postby Chilax » Fri Jan 07, 2011 12:09 pm

Cathy,

I am starting Gilenya next week (if Gilenya support gets its act together). The side effects include risks of infections. The immune system is altered by sequestering lymphocytes within the lymph nodes so white blood cells to reduce harm to the CNS. The obvious trade-off is picking up more infections.

I read and re-read both the G & Ty trials and felt (for me) the efficacy of G outweighed the its safety concerns.

You may want to look into G & discuss with your neuro. After discussing treatment options I changed my neuro's mind to G from Ty.

Good luck.

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