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Old 09-21-2008, 09:46 PM #1
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*Ra* *Ra* is offline
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Location: Hot & Sunny Arizona
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15 yr Member
*Ra* *Ra* is offline
Junior Member
*Ra*'s Avatar
 
Join Date: Jul 2008
Location: Hot & Sunny Arizona
Posts: 10
15 yr Member
Default Avonex LYO

I've been on Avonex since April 2007. At first it didn't give me any side effects but then it did. And they were really bad. Full body tremors and all-over muscle spasms, fever & chills, and level 10 pain. It was awful and my neurologist refused to do anything about it. She said it was par for the course. I say, give me something to treat the pain that I have once a week for 24 hours straight and I'll stop my complaining. She wouldn't. I went to my primary care doctor and said that the few Valium I had left over from my dental work had been helping with at least relaxing me enough to get to sleep (the neuro wouldn't even Rx that for me!). I'd have to take my nightly meds, as well as 3 extra strength aspirin, 2 Somas and, 10 mg of Valium... and still until I went to sleep, IF I went to sleep, the pain was unbearable and my kids and husband would be afraid I needed to go to the hospital.

I finally got my neurologist to do something. It wasn't necessarily treating the pain but it's a start. I told her that I'd heard on the old MS forum I was a member of for a time that people were having better luck with the LYO (powdered form) of the Avonex. So, with some hesitation, she said I could try that.

It took some arm twisting to get the prescription from her medical assistant who swore up and down I didn't need a new Rx for it (even though I did). But I finally managed to get the LYO and injected with it last Thursday.

The symptoms were lessened. I still had the symptoms, but not anywhere near the degree that they were before. Time will tell if this is how it will continue. I certainly hope so.

If any of you are on the Avonex prefilled and having trouble, I suggest talking to your doctor about trying the LYO. People (including some from Biogen) say it's the suspension fluid that the prefilled uses that seems to make the difference. It's worth a shot if you're suffering from your injections.
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dmplaura (09-21-2008), karousel (09-22-2008), Twinkletoes (09-21-2008)
 

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