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Old 07-08-2008, 08:25 AM #8
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barb02 barb02 is offline
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Join Date: Jan 2008
Location: Illinois
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15 yr Member
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Brenda,

I am sorry I did not provide a more complete reply last night. I read your post right before I went to bed. I had a total of 5 infusions. As Riverwild mentioned, you personally need to talk to your doctor. I received my infusions in my neuro's office and they scheduled them when he was there due to the problems I experienced.

I did begin to premedicate after my first reaction. This occurred during my 2nd infusion. I not only experienced cold chills, but I also had difficulty breathing... And my reactions intensified in their severity to the point that during my last infusion, I was given an iv of benadryl prior to the infusion, they slowed the infusion down, and then I had to be given another iv of benadryl and oxygen halfway through the infusion due to a reaction, which they had to stop (the infusion). The cold chills and shaking lasted about 3 hours.

I tested positive for antibodies after my 4th infusion, but the advice my neurologist received was to continue with the tysabri for 6 more months and then retest. However, once I went into shock during my 5th infusion, he was told that I should not receive anymore and that reactions would probably just get worse.

When I went to the MS center at Barnes Hospital in St. Louis, they seemed to think that I was experiencing allergic reactions -- not infusion reactions. I am not sure what the difference is. In retrospect, I have realized that I was also experienced cold chills/shaking almost every afternoon that I was on tysabri.

Make sure you get tested for antibodies. It usually take about 3 weeks to get the results. So if you get tested right away, you should know the results prior to your next infusion date.
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