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Old 11-24-2015, 01:00 AM
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Riverwild Riverwild is offline
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Join Date: May 2007
Location: Heah!
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15 yr Member
Riverwild Riverwild is offline
Magnate
Riverwild's Avatar
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
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Quote:
Originally Posted by Natalie8 View Post
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
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.
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


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I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
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Negative for JC virus antibodies!
.

I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
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"Thanks for this!" says:
Grammie 2 3 (11-25-2015), Natalie8 (12-22-2015), SallyC (12-22-2015), Twinkletoes (07-07-2017)