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Old 01-28-2011, 10:45 AM
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Riverwild Riverwild is offline
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Join Date: May 2007
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Riverwild Riverwild is offline
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Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
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Quote:
Originally Posted by daisy.girl View Post
I have a questions about when and why they won't do an infusion.

If you are in a Flare or have a new symptom, will they still do the infusion?

Has anyone went to there scheduled infusion and not have it for some reason?

thanks, I go Feb 2 for my first infusion.
The infusion center will ask you a few questions. If you report anything in response to those questions, they will call your neurologist and ask him for his approval or disapproval in response to your answers. You may end up waiting hours until he calls them back but they will not give you the infusion until he responds. If he feels that the infusion should be withheld, you don't get it, period. Here's more info and the list of questions:
http://www.tysabri.com/tysbProject/t...ng-program.xml

I am careful to report any new or unusual symptoms to my neurologist when they occur and last more than 24 hours, as he has instructed me to do, so he knows about anything that may be going on before I go for the infusion. For some it is 48 hours, but my neuro is watching me pretty closely after 48 infusions, so it's 24 hours for me.

I haven't been refused an infusion yet. I skipped one since May 2007 because I was laying in a hospital bed looking up at all the bags hanging on the pole after an emergency appendectomy and feeling like i was going to vomit every 5 minutes, despite taking Zofran. I decided on my own to skip that infusion, with the blessing of my neurologist. He said it was up to me but he had no objection to me having the infusion or not having it, and said that the antibiotics I was on would not affect the infusion process at all, nor have any adverse effects on me.

When you get sick, you treat the illness. When I had a UTI it was treated. I had an impacted wisdom tooth, it was treated. I had salmonella, it was treated. If you have a relapse, it can be treated with steroids.

It's the long term therapy (pulse therapy) with steroids that is not allowed. You may not be allowed to have infusion if you are on chemotherapy for cancer treatment. You will not get your infusion if you have taken any immunosuppressants- but wouldn't your neurologist know about them anyway if you are reporting as you are supposed to do?
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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!
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I'm doing alright and making good grades,
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