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Old 04-01-2011, 08:34 AM #1
daisy.girl daisy.girl is offline
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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.
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Old 04-10-2011, 05:40 PM #2
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Quote:
Originally Posted by daisy.girl View Post
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
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Old 04-11-2011, 10:23 AM #3
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So, what was your decision, Daisy? How are ya doing?
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Old 04-11-2011, 11:28 AM #4
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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.
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Old 04-11-2011, 11:44 AM #5
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Quote:
Originally Posted by daisy.girl View Post
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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Old 04-14-2011, 11:35 AM #6
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The '24' is probably his Guesstimate of the risk. The test is actually not for the Virus, it is for Antibodies to the Virus, which may indicate a possible higher risk. You just have to decide if the benefits out way the risk.

If it gives you a much higher Quality of Life you may be willing to assume a higher risk. It can be a very difficult decision.
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Old 04-17-2011, 09:10 PM #7
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I was told by my neurologist that Tysabri was the ONLY THING left for us to try; exhausted all the A, B, C & R drugs can no longer take them for one reason or another. I knew he was involved with the trials testing for the JVC virus & I INSISTED on being tested BEFORE I would even consider Tysabri. The results came back last week I TESTED POSITIVE FOR THE JVC VIRUS!

Trouble has a tendency to find me with me having to look for it so NO I WILL NOT TAKE MY CHANCES ON TYSABRI KNOWING I HAVE THE VIRUS & IF I WAS TAKING IT & FOUND OUT AFTERWARD I WOULD STOP IMMEDIATELY!
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