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Old 05-23-2009, 01:10 PM #11
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ewizabeth ewizabeth is offline
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Join Date: Sep 2006
Location: northern Illinois
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ewizabeth ewizabeth is offline
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Join Date: Sep 2006
Location: northern Illinois
Posts: 5,258
15 yr Member
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Originally Posted by JJLL411 View Post
It has been quiet in here for a while - and LL, (Love of my Life), and I haven't posted in a while because everything was going so smoothly with Tysabri. We began to take it for granted that this miracle drug was THE solution without any drawbacks.

Until infusion 18.

Having never experienced any major side effects other than some minor facial flushing after the first few infusions, LL had a major reaction 45 minutes into infusion 18 in early April. She went limp, had total body spasticity and was temporarily paralyzed. The Neuro was called into the infusion center, stabbed her with an Epi-pen and then escorted her to the ER at the hospital next door. We spent the night there.

LL's Neuro said that this was the strangest reaction he had ever seen. His practice runs one of the larger infusion centers in the country and it was fortunate that he was present when LL had the reaction.

Follow up consult with the Neuro revealed that she has NOT developed antibodies to Tysabri. Since we all had been so pleased with her amazing response with Tysabri, the Neuro suggested that we try it again with pre medication - and we did - for Infusion number 19.

LL took Benadryl an hour before that infusion. The infusion center nurses administered more Benadryl and a steroid immediately prior to infusion. All went well - with little reaction other than the facial flushing again and (worse than normal) fatigue afterwards.

Her adverse reaction at 18 scared the s**t out of us but we are thrilled that she can continue with TY. Despite this scare and, until we have a cure, we still swear by Tysabri.

JJ
Now that would have scared me off of it for good. I'm glad it went well with the next infusion and I hope it continues to do so. God bless her! And you too!
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