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Old 07-08-2008, 01:07 AM #4
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Riverwild Riverwild is offline
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Riverwild Riverwild is offline
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Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
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Quote:
Originally Posted by 4boysmom View Post
Okay, I've now completed four infusions. The last two have been awful! I get through the first hour fine, the nurse comes in and removes the med, and it is my hour watch time.

I get the same flu-like symptoms I got when I first started Avonex! I get chills, headachey, and achy all over. My temp goes up one degree, and this last horribly for about a half hour.

The nurse cracked up today when I showed up in 95 degree weather with sweat pants, a warm blanket, fuzzy socks with Birkenstocks. She realized why when I started with the chills. They brought me some camomille tea (awful stuff by the way!) to help warm me up. After a half hour the chills stop.

I don't pre-medicate, but I'm sure that will be changing.

Now it is 4 hours after the infusion and I still feel a little achy. Anyone else get flu-like sxs??
Have you talked to your neuro and let him know what is going on???

I still don't premedicate. I haven't had any adverse effects, but you can be sure if something like this kept happening, I would be talking to my neuro ASAP about it, and the premedication, having an antibody test, and trying to get to the bottom of it. I am still scheduled to see my neuro every three months, just to keep up on what is happening. We will move to a six month schedule after this coming appt, but he always said if ANYTHING is going on that concerns me, to CALL HIM!!!

I'd also ask them if they are mixing the med beforehand and refrigerating it? Some clinics do that. It can be stored, mixed, under refrigeration, for up to 8 hours. My place doesn't mix it until I get there and they have all the answers to their questions, so they don't waste the med if I don't answer the questions to their satisfaction. Having a cold infusion can lower body temp a few degrees.

I hope you get some answers and that it all works out for you! Please let us know how it's going!
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diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
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Tysabri 05/25/07-present
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