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10-20-2008, 03:34 PM
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Member
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Hi All,
I went for infusion #2 today and after a few UNsuccesful tries they FINALLY got a vein to use on me, they sugessted I get a port........Duh, that is what I wanted from the start......BUT after the whole dose of Ty went in I developed a slight red blotchyness on my arms and stomach.......they gave me IV benedryl and took a vile of blood from me to check for antibodies. i would think that I should be OK for Tysabri in the future because it was such a slight reaction BUT the blood work will tell the story on if I stay on it or not.. This is IT for me as far a the CRAB drugs go, I have tried them all, ty is my one last hope........ Has anyone else had this problem? Thanks Joe
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Dxd RRMS 12/23,06, Copaxone 2/07 to 9/07 - Rebif 10/07 to 7/08, BAD flare with Transverse Myelitis & Pancreatitis.....,9/08 Pseudo Cyst!!!! and another TM attack. Started Tysabri 9/22/08 - 10/21 Allergic reaction to Tysabri, SSDI Approved 11/14!! Continued Ty 11/17 with a Pre-medicate. Solumedral 12/11-12/13 Ty #5 Jan 12th! |
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| "Thanks for this!" says: | JessieSue (10-20-2008) |
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10-20-2008, 03:46 PM
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Magnate
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Hi Joe!
Sorry to hear about your rashy stuff! Your neuro may have you pretreat with Benadryl and tylenol before infusion now. I have had pinpoint itching during infusion for awhile now. It doesn't get worse, there's no physical evidence, no further signs or symptoms involved. I am trying to get to the bottom of it during infusion. I noticed that the mixture in the IV bag seemed to be separating towards the end of infusion , so last month we rotated the bag a few times and no itchies. Have you posted this on the Tysabri thread? Maybe you will get a response from someone who is now or has been on Ty and has had these symptoms. I hope it works out for you! Please let us know how it comes out! 
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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? . 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 . 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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10-20-2008, 07:13 PM
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Elder
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Quote:
I hope this explains the antibody stuff for you!
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Cheryl Dx: MS 2001 CRPS 2009 “When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford |
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| "Thanks for this!" says: | Riverwild (10-25-2008) |
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10-20-2008, 07:38 PM
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Magnate
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I am sorry!
 (I am so glad I was sitting down when I read your post by the way!)
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| "Thanks for this!" says: | tovaxin_lab_rat (10-20-2008) |
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10-20-2008, 09:28 PM
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Grand Magnate
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i'm sorry about the reaction joe.
i hope you can con't with the med. but sometimes reactions will only get worse. i'm sure they'll let you know. good luck.
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Judy trying to be New Skinny Butt ______________________ You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should. -------------------------------------- "DESIDERATA" by Max Ehrmann |
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10-20-2008, 11:48 PM
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Grand Magnate
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You aren't using Benadryl now, Joe? Many people do . . . although I don't necessarily agree. I always avoid allergens, personally.
I've heard of some that Benadryl does the trick, and others where the next reaction (after one like this) is much worse. PLEASE make sure someone stays with you next time, or there is a good emergency notification. I hope you are one that can manage the allergy though, as I know you had high hopes for this treatment option. Cherie
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I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas
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