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Tysabri Check In, Support and Information Part Three

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Old 06-12-2012, 05:35 PM #1
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Sally. That's an awful story!!
Oops, I'm sorry Nat, at the time, it just made me so mad. If they hadn't been so careless and then let it go on so long, she may have lived to see some of her greatgrandchildren.
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Old 06-14-2012, 08:09 PM #2
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Today was #69 for me
Other than a headache, which is rare for me, all went well !
Linda
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Old 07-14-2012, 05:00 PM #3
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Default #70
Hi all !
Thurs was #70-no headache this time I am this VERY HAPPY CAMPER
A ms neuro at Georgetown U did a trial on getting infused 8 weeks not 4. He said everyone on Ty after 2 years should go to 8 wks whether jcv+ or -. I am going to check with my neuro in Aug-he's already told me every 4 but, now this new info ...I'll see what he says now ??
Linda
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Old 07-20-2012, 09:30 AM #4
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Had first infusion, no pain or scarring. Got free drug, don't know how much will cost for clinic visit. So far better than injections. Fatigue level about same afterwards but hot weather could be factor.
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Old 07-26-2012, 04:06 AM #5
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Originally Posted by Grammie 2 3 View Post
Hi all !
Thurs was #70-no headache this time I am this VERY HAPPY CAMPER
A ms neuro at Georgetown U did a trial on getting infused 8 weeks not 4. He said everyone on Ty after 2 years should go to 8 wks whether jcv+ or -. I am going to check with my neuro in Aug-he's already told me every 4 but, now this new info ...I'll see what he says now ??
Linda
I thought about going to an 8 wk. schedule back when my insurance changed, but I am afraid of breakthrough relapses!
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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,
The future's so bright, I gotta wear shades!
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Old 07-28-2012, 06:48 PM #6
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I just had #35. Still plugging along. Nothing new to report!

I'm still on the every 8 weeks plan....have been now for a couple of years.
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Old 07-31-2012, 03:50 PM #7
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Is it half the price, Nat?
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Old 07-31-2012, 07:06 PM #8
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Is it half the price, Nat?
Oh Sally, I wish it was half the price! My doctor no longer does it in the office where it used to be a $35 copay....now I have to go to a clinic which costs WAY more. But paying the lump sum every 8 weeks rather than 4 weeks is still better!
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