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-   -   Just wondering what you would do? (https://www.neurotalk.org/multiple-sclerosis/147527-wondering.html)

dmplaura 03-31-2011 09:33 PM

I figured it like this:

Chances of MS? Roughly 1 in 75,000 (in Canada). (*That's a very rough estimate).

I have MS.

Chances of PML from Tysabri? 1 in 1,000. :eek:

For having a disease for approximately 8 years now (going by my neurologist's best guess) and having sensory symptoms only.. Tysabri for me is not worth the risk, what so ever.

I'd go back to site reactions, muscle spasms, bed wetting and horrific nightmares on Copaxone before Tysabri ever crossed my radar.

Erin524 03-31-2011 09:36 PM

Is mono where the JC virus comes from??

Good thing I'm not planning on every trying Tysabri then. I had a nasty case of mono about a year before I started getting bizarre symptoms that eventually turned out to be MS about 10yrs later.

dmplaura 03-31-2011 09:42 PM

Quote:

Originally Posted by Erin524 (Post 758074)
Is mono where the JC virus comes from??

Good thing I'm not planning on every trying Tysabri then. I had a nasty case of mono about a year before I started getting bizarre symptoms that eventually turned out to be MS about 10yrs later.

You may be right Erin... and I may be wrong. ;) Epstein Barr is mono, I just read a bit about JCV. Perhaps I don't have JVC! All the same, I will not risk Tysabri. Were I in a situation with a much more aggressive course of MS, I may be thinking differently.

SallyC 03-31-2011 09:54 PM

Quote:

Originally Posted by Erin524 (Post 758074)
Is mono where the JC virus comes from??

No!! It is a totally different kind of virus.:)

ewizabeth 03-31-2011 10:28 PM

I would stop immediately! Without a doubt!

daisy.girl 04-01-2011 08:34 AM

Well, my next Tysabri infusion was scheduled for this Wed April 6th, I cancelled it and scheduled with my neurologist. So, I see him on Wed instead of having the infusion.

I have had a lot of negative side effects since the infusion too, the most uncomfortable and scarey is that my heart feels like it is beating out of my chest.....and now that my JC Virus test is positive, I want to discuss what other options I have at this point.

Thanks everyone.....I really appreciate all of your comments. It is nice to hear what someone else would do in the same situation.

I am afraid to do nothing, as I had 5 additional brain lesions in a 9 month period....but truly I don't see using one of the ABC-R. The effectiveness is just not enough, considering that they have found out now that the interferons only work for 50% of MS patients. I think placebo effect was pretty close to the actual effectiveness of the ABC-R's.

clarkstar 04-10-2011 05:40 PM

Quote:

Originally Posted by daisy.girl (Post 758161)
Well, my next Tysabri infusion was scheduled for this Wed April 6th, I cancelled it and scheduled with my neurologist. So, I see him on Wed instead of having the infusion.

I have had a lot of negative side effects since the infusion too, the most uncomfortable and scarey is that my heart feels like it is beating out of my chest.....and now that my JC Virus test is positive, I want to discuss what other options I have at this point.

Thanks everyone.....I really appreciate all of your comments. It is nice to hear what someone else would do in the same situation.

I am afraid to do nothing, as I had 5 additional brain lesions in a 9 month period....but truly I don't see using one of the ABC-R. The effectiveness is just not enough, considering that they have found out now that the interferons only work for 50% of MS patients. I think placebo effect was pretty close to the actual effectiveness of the ABC-R's.

with all your side effect issues, i would cancel tysabri as well, or at least hold off for awhile :hug:

SallyC 04-11-2011 10:23 AM

So, what was your decision, Daisy? How are ya doing?:hug::hug:

daisy.girl 04-11-2011 11:28 AM

I saw my neuro, and he thought that the fast heart rate, internal tremor that I was feeling was actually an increase in my heart rate, which is a reaction to the Tysabri. He also thought that I should try one more with the rate of infusion slowed down. He really wasn't too concerned that my JC Virus titer was positive, he said that I could still have up to 24 infusions with a positive titer.

I told him I would think about whether or not I wanted to try anothe Tysabri infusion or not. I am having company all of next week, so I am not going to do anything until after that.

Please pray that I make the right decision for me.

dmplaura 04-11-2011 11:44 AM

Quote:

Originally Posted by daisy.girl (Post 761300)
he said that I could still have up to 24 infusions with a positive titer.

I'd be wondering myself where he pulled this number of '24' from (unless he disclosed the source to you).


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