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Member
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Join Date: Jan 2008
Location: Southern California
Posts: 308
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Member
Join Date: Jan 2008
Location: Southern California
Posts: 308
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Hmm, well, I only went for two Ty infusions before I decided to stop. However, my experience wasn't like that of anyone else I've read about.
I had my infusions at an oncology center (attached to the hospital).
The first time, the oncologist met with me for about two minutes before giving me "clearance" to begin! They led me to the infusion room - which had 12-15 of those comfy recliner-type infusion-center chairs. There were a handful of nurses in the room.
One nurse came over and handed me a sheet to fill out - it was the sheet with the 4 questions. I'm pretty sure she was supposed to actually ask me these questions, but she didn't. She came back with the IV and started the drip. I gave her the filled out form.
The second time, I went right into the infusion room and the nurse started the drip. Didn't even bother giving me the four questions, verbal or written.
There were others receiving infusions - mostly chemo, though both times, there was at least one other person getting Tysabri.
Both times I took liquid benadryl while in the waiting room and then an ativan for my nerves before the drip began. I can't tell you if they ran a saline drop post-Ty, as both times I fell asleep shortly into the drip! (benadryl + ativan + early morning appointments = some of the best sleepytime!)
I think the first infusion I was at the office for a total of 2 hours, the second time a little less than that.
Anyhow, neither time did they check my vitals. Nor did they tell me what to do if I had a reaction post-infusion. (I never did.)
I suppose if I didn't know the "rules" and what to expect, this would all be VERY bad....but since I knew from my own prior research (from many of you guys!)....it wasn't a problem for me.
This center sees about 50 people per month for Tysabri infusions.
Oh - and the room was absolutely freezing. I'm in Southern California - and both times I wore multiple layers of clothing and used a few blankets. (The second time I brought my own down throw - and had them give me some more blankets.)
Anyhow, for now - no more Tysabri. Revimmune/HiCy coming soon! (going to balti on June 29th)
~Keri
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