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04-11-2014, 08:33 PM
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#431 | |||
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#46. Getting my JCV antibody test every 3 months now. Keep plugging on.
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On Tysabri and love it. . |
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04-16-2014, 10:44 AM
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#432 | ||
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Yesterday was 93 !!
I have committed to a different stratify study now to have them take blood every 3 mths - approx 7 vials  . This is different than the regular study because they consider me positive at .23-.28 jcv. Negative is .2 and positive is .4 but, the co-ordinator said "because positive".. they are attempting to learn more about pml. I will do what I can, within reason, to help with research ! Linda |
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04-17-2014, 01:06 AM
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#433 | |||
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Hi Linda -- I also signed up to be in the new Stratify trial and get my blood tested every 3 months. I don't know how many vials they want because I'm JCV -
Congrats on 90-whatever! I realized that even though my infusion number is in the 40s, I will have been on Tysabri for 6 years come this July. It's hard to believe. If I had stuck to every 4 weeks I'd be at approximately #75! But the every 8 weeks seems to work great and keeps the UTIs at bay.
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On Tysabri and love it. . |
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04-17-2014, 11:57 AM
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#434 | ||
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I''m happy for you Natalie
I hope you stay jcv-!! My neuro will continue the jcv test every 3 mths because they cannot use the info from the stratify test  Linda |
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04-24-2014, 01:54 AM
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#435 | |||
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Got my JCV antibody test results back. Still negative. Yeah! This time they gave me my titer number. I was .11. I guess anything under .20 is considered negative. But what exactly does it mean to be .11? Do I have some JCV in me??but still happy.
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On Tysabri and love it. . |
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05-02-2014, 02:58 AM
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#436 | |||
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Magnate
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Howwwwdyyyy!
Coming up on 94 I think...lol! Hard to believe it's been so long! Stratify - I also asked about the numbers thing during my neuro appt. I was told that since I am negative they don't give me numbers. If I had a positive result after so many years of neg. then they would do a more specific assay to check that the result was true or false. Since I am negative, I am not going to worry about it! Hope everyone's doing well. The snow has melted here, the ice is off the lake and the boat is registered....now send up the HEAT!
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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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05-16-2014, 09:41 PM
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#437 | |||
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infusion #5 (round 2 after 2 years off)
doing great, i'm sooo happy i was able to get back on tysabri, it saved me! 
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Multiple Sclerosis Diagnosed August 2010 |
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05-17-2014, 06:37 AM
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#438 | |||
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Hey there
Just wanna know, if anybody else here is JC+ and still using Tysabri? If so, how are you feeling? I don't know my number - doc in Australia told me they didn't quantify it when I had my test. Thanks
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Lyn . Multiple Sclerosis Dx 2001 Craniotomy to clip brain aneurysm 2004. ITP 1993. |
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| "Thanks for this!" says: | Grammie 2 3 (05-17-2014), Natalie8 (05-20-2014), Riverwild (05-26-2014), SallyC (05-17-2014), shayna (07-08-2014) |
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05-17-2014, 06:18 PM
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#439 | ||
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Yes Lynn I am considered positive since about 6 mths ago. I am a bit over .2 (which I thought was limbo) . I know of someone on another site who has been 4.1 and then down to 3.6; .4 is positive, she is high but, loves the life Tysabri has made possible for her and doesn't want to give it up. Her Dr has gone along with her!
good luck Linda |
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05-20-2014, 01:53 AM
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#440 | |||
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Apparently the odds for JCV- patients have changed.
http://www.tysabri.com/pdfs/I61061-13_PI.pdf? Here is the most updated info. If you cannot link then copy and paste. Anti-JCV Antibody Negative* <1/1,000 Calculation based on 2 cases of anti-JCV antibody negative PML in patients exposed for at least 1 month of therapy as of September 3, 2013. Data for anti-JCV antibody negative patients reflects worldwide exposure I guess there have been 2 cases of PML in JCV- patients now. It used to be a chance of 1 in 10,000. Now it's down to 1 in 1,000. Thoughts anyone?
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On Tysabri and love it. . |
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#93
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