tysabri headaches - anyone else get them?

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Regular Member

Date Joined Apr 2005
Total Posts : 103
   Posted 11/30/2008 9:46 PM (GMT -7)   
I used to rarely get headaches. Now I get these severe migraine-like headaches now that i'm on tysabri. the tysabri people claim that it is a common side effect. last night, however, i wanted to shoot myself. it was so painful and worse than ever. granted, i have the flu right now... but it was bad. the solution: 800mg of Ibuprofin (which I NEVER take). 1 hr later I felt ok. of course, that was 6 hrs into the headache.

I get the headaches like clockwork 10 days after my infusion. it is very odd.

MRI is forthcoming... just haven't gotten to it yet.

anyone else? or am i all alone on this one?


Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 11/30/2008 10:53 PM (GMT -7)   
I've been off of it for 3 months now so I don't know about longer use and major headaches. The headaches I had while on it for the 6 months were not that severe and they came the day after my infusion. Are they always that severe or could it be the influence of the flu virus?

Hope you get some answers and relief!!
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08 => STOPPED 10/3/08 - now 2 months into it & it was the right decision
--currently taking budesonide suppositories, 3mg at night.  Doing well with this so far.
--single mom to 11-yr-old girl

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