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05-01-2010, 06:42 PM | #551 | |||
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Grand Magnate
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Is there any connection between testing positive for antibodies to tysabri and antibodies to JC virus? I still wonder why I developed antibodies to tysabri, had an allergic reaction to interferons and could not tolerate copaxone.
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"Thanks for this!" says: |
05-03-2010, 04:16 PM | #552 | ||
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Junior Member
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I had my infusion last Friday...# 32 It went well and I had my "normal" side-effects: headache, aches and pains, nausea, abdominal pain, dizziness, sleepiness, loss of appetite and chills. So, I spent a few days on the couch sleeping I'm doing much better today...just a bit dizzy.
The oncologist who overlooks my infusions almost had a heart attack when the nurse told him how long I have taken diflucan for that fungal rash. He had not planned on talking to me but as soon as the nurse mentioned it he rushed over to me and asked several times if my neuro was aware of the fungal rash and the length of time I had been on diflucan. I reassured him that she has known about the rash for the past 2 months and when I saw her 2 weeks ago she said to go ahead with my infusion. The last time I had an infusion they forgot to ask me any questions and the dr wasn't there. They didn't draw blood again. I can't remember the last time they did But, I had the info from the blood draw my PCP did and I gave that to the infusion dr when he was so upset about the diflucan. They made a copy of it and placed it in my file. I'm going to call my neuro and see if I can get into the studies that are being done to test for those patients prone to PML. There was another M.S. patient at the infusion center and she told me that she had 40+ infusions...she stopped counting after #40 She loves TY and has no intention of stopping. She's still in a wheel chair but her QOL is so much better and she hasn't had an exacerbation since she began Ty. take care everyone, Shayna |
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"Thanks for this!" says: |
05-03-2010, 08:16 PM | #553 | |||
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Magnate
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I haven't seen any data about that. I'll ask around for info.
__________________
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: |
05-04-2010, 03:15 PM | #554 | ||
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Member
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Quote:
Antibodies to Tysabri mean that you're body has an allergic reaction to the Tysabri drug. Tysabri antibodies drastically reduce the drugs effectiveness (neutralizing its effect). |
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"Thanks for this!" says: | barb02 (05-04-2010), Grammie 2 3 (05-05-2010), Natalie8 (05-06-2010), Pink (05-10-2010), Riverwild (05-04-2010) |
05-05-2010, 03:02 PM | #555 | ||
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Member
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I saw my new neuro yesterday who is actually a neuro I saw a couple of years ago and then he gave up his practice to totally go into pediatric neurology. I like him-first CO neuro I truly like. He has ordered the JC virus blood test for me. I didn't think to ask questions as to what this will tell us I, of course, am hoping for peace of mind that it is not in me at all. But if the new test is not available and this is an old blood test maybe it is worthless
I will get my 45th infusion Fri-hoping I can stay on Ty and that it works for me until something really better is available. RW, thank you for the Ty info Linda |
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05-06-2010, 07:50 AM | #556 | |||
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Magnate
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Going in on the 18th. One more after this and then re will take more pictures and see what is going on. Unfortunately, the neuro had to increase most of my meds this week, so it doesn't look like it is going to be good news.
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. I am not spoiled! |
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05-06-2010, 10:05 PM | #557 | |||
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Member
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Hi Linda! I will keep my fingers crossed for you! Peace of mind would be nice.
Does anyone know, then, if the JC virus antibody assay is available to everyone? I'm still a little confused about this. I hope everyone is enjoying spring!
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On Tysabri and love it. . |
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"Thanks for this!" says: |
05-07-2010, 09:44 AM | #558 | ||
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Member
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The assay is not available commercially only through the two Stratify trials. My understanding is that they are trying to make the assay available to as many Touch patients as possible but your Doctor will have to register with the trial - Bottom line check with your Doctor (Neurologist enrolled in Touch)
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"Thanks for this!" says: | Grammie 2 3 (05-07-2010), Natalie8 (05-21-2010), Pink (05-10-2010), Riverwild (05-08-2010), shayna (05-27-2010) |
05-15-2010, 11:58 AM | #559 | |||
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Senior Member
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If anyone is interested, the Wall Street Journal (May 14) reports a new total of 49 cases of PML associated with Tysabri as of May 6. The number of deaths is unchanged (11) since the last reporting a month ago.
http://online.wsj.com/article/BT-CO-...eadlinesEurope (You need to be a subscriber to read the entire article.)
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Repeal the law of gravity! MS diagnosed 1980. Type 2 diabetes, osteoarthritis, osteopenia. Avonex 2002-2005. Copaxone 6/4/07-5/15/10. Currently: Glatopa (generic Copaxone), 40mg 3 times/week, 12/16/20 - 3/16/24 |
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"Thanks for this!" says: |
05-16-2010, 11:51 AM | #560 | ||
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Member
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Agate, if you could give the highlights of the article, such as where, how many infusions etc I would really appreciate it. This, of course, is me ***-u-ming you are a subscriber !!
Thanks, Linda |
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"Thanks for this!" says: | Natalie8 (05-21-2010) |
Closed Thread |
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