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06-30-2013, 08:31 PM
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#371 | |||
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In Remembrance
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7 come 11. A lucky day to be starting something new.
 With all of the DMDs, luck is what you need most of all. I hope your chances for Tysabri working for you are the best.  Welcome Melissa to NeuroTalk, so nice to meet you. 
__________________
~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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| "Thanks for this!" says: | Grammie 2 3 (07-18-2013), Riverwild (07-24-2013) |
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07-15-2013, 03:58 PM
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#372 | ||
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Hi Melissa, hope your 1st infusion went well !
On the 9th I had #83  I hope you do, at least, as well as I have!!Good luck and my best wishes Linda |
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07-17-2013, 01:05 AM
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#373 | |||
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Had #41 last Thurs. Got into a spat with the temporary nurse trying to explain that my infusion runs more slowly. Finally I had to say "Look, it's my body, I've been taking this drug for 5 years and know how I feel when it runs quickly, and please call my doctor's office to confirm the rate it's been running at for the past 3 1/2 years." Jeez. I HATE it when medical caregivers won't listen to you closely!
__________________
On Tysabri and love it. . |
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07-24-2013, 03:35 AM
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#374 | |||
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Magnate
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Quote:
__________________
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 diagnosed 09/03/2004 scheduled to start Tysabri 03/05 Tysabri withdrawn from market 02/28/05 Copaxone 05/05-12/06 Tysabri returned to market 06/05/06 Found a new neuro 04/07 Tysabri 05/25/07-present Medical Marijuana legally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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| "Thanks for this!" says: | Natalie8 (07-26-2013) |
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07-24-2013, 03:37 AM
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#375 | |||
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Magnate
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#81 down, JCV negative again...
Life is good! 
__________________
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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| "Thanks for this!" says: | Grammie 2 3 (08-08-2013), Natalie8 (07-26-2013) |
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07-24-2013, 09:20 AM
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#376 | |||
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In Remembrance
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Are you doing any river rafting?
__________________
~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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| "Thanks for this!" says: | Riverwild (09-30-2013) |
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07-26-2013, 01:42 AM
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#377 | |||
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Quote:
__________________
On Tysabri and love it. . |
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08-03-2013, 02:24 AM
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#378 | |||
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Member
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Hey folks, this is the most interesting research on Tysabri that I have read in a long time.
http://www.clinicalneurologynews.com...duced-pml.html What they are suggesting is that people who are JCV + and who weigh 70 kg. or less move to 5-6 week dosing schedules to lower PML risk instead of getting your infusion every 4 weeks. Apparently if you are small and a light weight, you build up higher than anticipated levels of Tysabri -- something they call saturation. You wind up even MORE immunosuppressed and at risk for PML. Don't you think they should have figured this out earlier? 
__________________
On Tysabri and love it. . |
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08-08-2013, 02:14 PM
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#379 | ||
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Member
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Tues was #84
Had a nitwit nurse who tried to put the IV top of arm about 3" above wrist and then top of wrist .. needless to say another nurse put it in my hand in about 5 secs. I have reported her and said she is not to touch me again One lump she gave me is gone and the other almost gone-once again - what a nitwit!!Take care and be your own advocate Linda |
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09-03-2013, 04:28 PM
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#380 | ||
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YEA!! today was #84 and it completes my 7th year on this wonderful (for me) med
Hope all are doing well Linda |
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I just completed 7 years on Tysabri
Linear Mode
