Yay for #4 Laurie!

I had the itchies too after many of my infusions. It's just a pinpoint itch, but the doc said to do 25 mg. Benadryl and 1000 mg.Tylenol pre-infusion after the first couple of times. The benadryl didn't do a thing for it, so I don't do either anymore (the doc knows this) I went through a period of trying to eliminate every variable to see if I could find the cause. We finally figured out that for me, it seemed to be after about 2/3 of the bag was infused and that it was probably the mix separating, so now we rotate the bag a few times during infusion and that seems to have taken care of it! I also never scratch the itch since it will release histamines and make it worse.

I see my neuro every three months. I don't see him during my infusion, but he's right down the hall at the med center.. My nurses follow the TOUCH protocol to the letter, ask the questions and fill out the papers and the whole thing before they call pharmacist to bring the drug. I see the checklist, watch them check it off as they ask and see them fax it to Biogen Idec while I am being infused.

The protocol states that every one of the questions has to be asked EVERY time. The form needs to be faxed within 4 hours of infusion. When it is not received, Biogen calls my infusion center and asks why! If an infusion is cancelled, the infusion center still faxes the paperwork with the rescheduled date and time on it, and the reason why it was cancelled.

I told the nurses when we first started all this that I wanted them to follow the protocol to the letter, since I was the first patient. I wanted them to be able to do it every time, to have it be a habit for them, and after 22 infusions, it is. There are a lot of patients on Tysabri using this infusion center now and the nurses make sure they treat every one of them the same and follow the protocol.

Glad it all went well!