Quote:
Originally Posted by Riverwild
Well Good Grief! Now y'all are making me feel like I am an anomaly with no infusion reaction. 
Did they slow down the infusion when it happened? Just curious cause I heard a lot of infusion centers do that too, rather than stopping it completely. You may have better luck if you do the infusion at a slower rate than normal.
Hopefully, some of the Tysabri users from the other board will hop in here if they are reading and let you know what their experience with this happening is and what was done in their case as to procedure.
Glad you made it through it! Keep us posted!  |
Hello all,
RW, I am not sure if they slowed it down, I was to nervous to notice!
Before I say this, remember my Neuro said
"All that has happened with me, well I am in the less than 5% that has a serious reaction" But of course, that would be me!
Today is first day I feel somewhat normal. My legs have been aching bad, headache came and went, I swear felt like a spinal headache. Just very achy, blah feeling and very fatigued all weekend and yesterday.
My Neuro called me today and said he definately wants me to stay on Tysabri, but my infusions will now take place at a hospital, to be close to doctors trained in anaphylactic emergencies. They are scared of how long it would take if they had to call 911
Well, heck, now I am scared.
Has anyone heard of anyone doing their infusion at a hospital due to a severe reaction? My Neuro is hoping my body will adjust to the medication.
So, I guess they will overly pre-medicate me or stand there until I can't breathe??
Trying to stay positive!
