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Tysabri Check In, Support and Information Part Three

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Old 09-13-2014, 12:25 AM #451
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I got #48 done yesterday. I can never remember the number unless I go back and look at the forum! Just checking in.
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Old 09-15-2014, 08:03 AM #452
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Hi Natalie

What is your JCV status? My neuro wants me to find another treatment as I am 2.406 - the last thing I want to do is find another drug (I don't like the options).

Cheers
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Old 09-27-2014, 12:58 PM #453
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I had an MRI done about a week ago after having my last 2 infusion at 6 weeks instead of 4. MRI same as the one before (and others) no new or active lesions and Thank G-d no sign of pml !!!!

pretty sure I have now had 97 infusions

Be well..
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Old 09-30-2014, 07:33 AM #454
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That's fab Grammie - one question (and I am sorry if you have already posted this - are you JCV+ or JCV-?

Regards

Lyn
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Old 09-30-2014, 06:54 PM #455
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Hi Lynn, I am indeterminate.. <.20 is neg and >.40 is pos I have been .23, .27 and .24.
Did you go off Tysabri ?
I wish you well
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Old 10-03-2014, 08:04 AM #456
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Hi Linda

No, I am still using Tysabri - I am being an ostrich and sticking my head in the sand

When I get the nerve up, I am going to contact my Neuro and ask for another JCV test. My reading of 2.406 was from data they collected in 2012. Before I can make any decision, I think I need to know exactly what is going on with me NOW.
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Old 10-03-2014, 02:39 PM #457
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Quote:
Originally Posted by Lynn View Post
Hi Natalie

What is your JCV status? My neuro wants me to find another treatment as I am 2.406 - the last thing I want to do is find another drug (I don't like the options).

Cheers
Hi Lynn,

My JCV status is negative. It's been like that for several years (knock on wood!!).

Good luck with your decision making. The other drugs don't seem that appealing to me either.

Natalie
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Old 10-06-2014, 10:43 AM #458
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me again Lynn
Have you given thought to getting your infusion at 5, 6, 7, 8 weeks instead of 4?
The American Academy of Neurology has stated that going for longer periods of time lessons the chance of pml-I think, I understood out of, Maybe, 400 people those getting it at longer periods of time, no one got pml It's something to think about. Maybe you can look it up-approx 6 mths ago. I am now getting mine every 6 weeks-my MRI was the same after 3mths !

My best wishes and good luck !!!!
Linda
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Old 10-06-2014, 11:45 PM #459
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Lyn,

I just read about a new test that can possibly stratify PML risk even better than the JCV antibody test. What this means is that positive antibody test people can be identified as greater or lesser risk than titers show.

I can't link to the article myself but it's posted in this forum thread.

http://www.msworld.org/forum/showthread.php?t=134636

Perhaps ask your doctor about this? This could be good news and help you in your decision if you can access the test.
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Old 10-07-2014, 03:47 AM #460
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Hey! Still here, still alive, still on Tysabri, still no new lesions, no enhancing lesions, no advance in progression of MS.

October is my month of two Tysabri infusions. I had # whatever it was at the start of the month and will have the second at the end of the month.

Life is good. I have become a Magnate in my absence...whatevah that is!
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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
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Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
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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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