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Tysabri Check In, Support and Information Part Three

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Old 09-09-2012, 04:00 AM #281
offinthedistance offinthedistance is offline
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Does anyone know anything about the sore throat side effect?
Does it happen straight away? in a week? last a while, passing or constant?

I've had a raspy throat for a few days now, had my first Ty a week and a half ago.
Not a worry but is it hay fever or a Ty thing?
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Old 09-09-2012, 04:04 AM #282
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Oh, and it says one side effect is reduced appetite...
Anyone have this? I for one have eaten the equivalent of a horse every day since my first infusion.
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Old 09-09-2012, 02:01 PM #283
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I've had both of these. The reduced appetite is a nice side effect and the throat thing I get every month but sometimes it's just a couple of days sometimes just one day but never bad enough to take something. I don't remember what it was like in the beginning oh so many years ago. I think i'm up to #59 or so now.
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Old 09-09-2012, 05:42 PM #284
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*Dreaming of a reduced appetite*
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Old 09-10-2012, 11:24 AM #285
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Natalie, I am so very sorry ...
Thinking of you and wishing you well
Linda
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Old 09-11-2012, 04:15 AM #286
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Quote:
Originally Posted by offinthedistance View Post
Does anyone know anything about the sore throat side effect?
Does it happen straight away? in a week? last a while, passing or constant?

I've had a raspy throat for a few days now, had my first Ty a week and a half ago.
Not a worry but is it hay fever or a Ty thing?
I had the sore throat for the first 4 or 5 infusions, not bad enough to do anything about it but I remember it being annoying.

Do you still have your tonsils or remnants of your tonsils that have grown back? That's where my sore throat emanated from and the theory was that the tonsils may have been harboring a low grade infection when I started Tysabri many years ago.

As for the appetite thing, my appetite has always been healthy!
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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
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Negative for JC virus antibodies!
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The future's so bright, I gotta wear shades!
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Old 09-12-2012, 11:03 PM #287
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Strangely, I got the sore throat too. It has been 4 years so my memory of the beginning is vague. But I think it only lasted for the first 4-5 infusions. It definitely went away. Oh, and I have no tonsils.
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Last edited by Natalie8; 09-12-2012 at 11:25 PM.
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Old 09-12-2012, 11:22 PM #288
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Hi all, so I'm finally getting out of the hospital after being here for 6 days. I have to go home and keep giving myself IV antibiotics every 8 hours for another week and keep taking the oral antibiotics (probably for months). Oh and I have to change the dressing 2x a day and pack the wound with gauze dipped in colloidal silver.

The infectious disease doctor said NO Tysabri. It will be my 8 week mark on Friday. Then I have about another 2 week window according to my neurologist. Nothing has grown yet on the cultures so they still don't know what kind of bacteria it is. I have to get my neurologist to consult with the infectious disease doctor and figure out what will happen next.

Please pray that I can stay on the Tysabri while continuing to get treated for this infection. I'm scared to death I will have to give up Tysabri which has kept me relapse free for 4 years. I cannot tolerate interferons or Copaxone.

Please, please be careful at nail salons if you are on Tysabri. I would hate for this to happen to any of you guys. If I had known something like this could happen then I gladly would have given up pedicures.
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Old 09-18-2012, 12:19 PM #289
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Natalie, I am just plain sad for you ...
I hope you do not have to go off Tysabri- HOPING...
Think of you
Linda
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Old 09-18-2012, 12:25 PM #290
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Last week I got the results of my 4th jcv test - NEGATIVE. I have now had 3 neg, the first one 11/2010 was the "false" positive.
I am HAPPY
Linda
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