Barb,

There IS a protocol that is supposed to be followed for Tysabri. PLEASE contact the TOUCH program, ask them for Quality Control and make sure they know about your infusion center, because the infusion center isn't following protocol per the TOUCH training.

This infusion center put you at risk and may have caused the reaction you had. It is important to have the saline IV running, not only for emergency access in case you need medication infused immediately, but to dilute the Tysabri solution, which is concentrated and MUST be mixed with saline. The saline drip needs to run both before and after to ensure that you don't get a concentrated dose of Tysabri. The patient needs to be watched for reaction AFTER the infusion as well as during the infusion.

Every time I get antsy while waiting to get out of the infusion center, I remind myself that the waiting afterwards is part of the protocol to get the infusion. My nurses take this VERY seriously, and I still can't get out in less than three hours, unless everything comes off without a hitch. They give me the "talk" after every infusion about what to do if I have ANY problems afterwards.

I'm sorry this happened to you. I don't want it to happen to anyone else, and your sharing may help prevent it. Thanks for letting us know the details, so others have a heads up before they start.