Quote:
Originally Posted by Natalie8
I just read an article on a study of 2,000 people showing that if you get Tysabri every 8 weeks it has the same or better efficacy rate as every 4 weeks. And it reduces PML risk. This is something worth asking your doctor about.
http://www.medpagetoday.com/MeetingC.../ECTRIMS/53974
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This is why I came here today, to see if anyone had heard news about this.
I was fast asleep (comatose) after working all night. My infusion center called. We set up a schedule six months at a time and had scheduled the Nov. infusion for the day before TG since I usually do my infusion on Thurs.
The nurse told me that she called my doc just to let him know that my order giving me a little leeway (4 days either way) on the every 28 day schedule was expiring and that I had infusion scheduled a day ahead due to the holiday and that he refused to extend my order. He said that he was concerned even though I am still negative and wanted me to go to the every 8 weeks schedule.
I told her that it was impossible to rearrange my schedule that quick and that I had to talk to him and I would be in on Wed. for my infusion, and I hung up. I thought I dreamed the whole thing but called her back later and confirmed the call...
The day before the call I had been here reading back looking for something in this thread and found a post from a few years ago about telling my doc that I would let him be the doctor if anything changed.
He's usually very good about calling me if something changes or needs to be discussed, and I never heard a thing from him...and after fuming for a few minutes I realized that it is time to let go, shut up, trust him and just be a normal patient.
How's that for a holiday insight?
I'm pretty sure that this will be my last infusion on the 28 day schedule and that I will be moving to the 8 week schedule. I'm glad all of you trailbreakers went before me so I have some reassurance that it will all be ok.
I'm still peeved that he didn't call me first.