Quote:
Originally Posted by barb02
Vic, I do not mean to disagree with you, but not every infusion center is as attentive as yours. My nurse only checked on me about every 15 minutes during the first hour. I was in an exam room by myself the rest of the time. They did not slow the infusion down until my last one, and I had to remind them to do it. I did not receive an iv of saline solution during the second hour. They just told me to wait in the waiting room, and I had to go and tell the receptionist I was having a reaction. During my last reaction, I had to push a panic button, as no one heard me call for help.
I did fill out a survey listing these concerns, but have never heard anything. In my opinion, the entire staff at my neurologist's office needs to retrained or they should not be doing the infusions.
Natalie, I hope your infusion goes well for you. Most people do not experience the problems I had. The only reason I posted is so that you would know that you may have to be proactive. If I were you, I would call (your neuro) and ask about pre medicating.
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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.
