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.

Thank goodness you found a way to enjoy some relief!

Ra,
I'm also glad to hear that the powdered form works better for you. I seem to also ride the Avonex roller coaster, sometimes it is a breeze, other times it really kicks my butt, like this weeks shot. I was miserable, fever, muscle aches and nauseated (sp?) also. The nausea may have had something to do with the aleve and advil I was taking not sure. Other times, I have no issues at all with the shot. I've been doing this for 2.5 years and haven't got it figured out yet!!

When it's time for my shot though, I seem to be retaining a lot of fluid, it seems like my ankles swell, etc and my legs feel like I'm walking through water. After the Avonex shot and my night of misery this goes away until the next week around shot time again. :rolleyes: I don't know if the avonex is helping me with this or it's the aleve and advil helping with inflammation.

Good luck,
Kathy

hjmom,
You know, I've been having water retention all the time and it seems to be since I've been on the meds. I never even thought of the possible connection until you mentioned it. My ankles don't necessarily swell, for me it's more of a body thing, where my arms, legs and torso seem fatter (lol) but they're not and this will increase and decrease daily. The only day I thin down is the actual day I begin my monthy cycle. So one day out of the month I fit perfectly into my clothes. It's kind of ridiculous. I've been attributing this to the actual cycle itself. Hmmm... The possibility of the Avonex causing it is something to consider. Thanks!