I have been out of touch for a couple of weeks so I didn't know about all the insurance stuff going on over Tysabri. It was predictable I guess. At the risk of sounding ______________ (fill in the blank) I am having my second infusion on Wednesday of next week.
I did not fill dramatic difference with the first infusion. No bells, whistles, drums. Having said that, prior to the first infusion, I was starting to quiver inside. I don't have a technical explanation. Maybe it was a manifestation of my tremors. Anyway since the infusion it has stopped and I don't miss it. It's a small thing. I still have tremors in my hands, use a wheelchair and find carrying a cup of coffee impossible.
Also, I have had one exascerbation per year in March since being diagnosed. In 2005 I has 2 doses of Tysabri. One each in January and February. I had no exascerbation on 2005. I did have one this year.
12% vs 68%...whatever...I took Betaseron since 2001 and can't point to anything it did beside make me feel like I was at least participating in my disease. Hope this helps...I feel better!!!
Lee
2nd infusion
Lee,
Many thanks for posting your experience with Tysabri - please keep us posted on how you do. For too long discussions about Tysabri on this site have been focussed on squabbles about the trials data etc. It's now time to put those to bed - it's old news - the real interest should be in whether or not it delivers superior benefits to patients over exisiting drugs and whether it is safe (or as safe as it can be).
Best of luck
Ian
Many thanks for posting your experience with Tysabri - please keep us posted on how you do. For too long discussions about Tysabri on this site have been focussed on squabbles about the trials data etc. It's now time to put those to bed - it's old news - the real interest should be in whether or not it delivers superior benefits to patients over exisiting drugs and whether it is safe (or as safe as it can be).
Best of luck
Ian
I am also scheduled for my second infusion. Over the last 2 1/2 weeks the differences have been subtle, but there have been changes.
Over the last six to eight months I noticed my speech was being effected. I always had a problem with blocking, but it was getting noticably worse. Since the infusion, I am improving on that front. I have also had my best workouts ever. I workout on a Total Trainer (similar to a Total Gym) and have done more reps at a higher weight in the last month than I have since purchasing it in February.
My walking has improved slightly, but I would like to think it's only a matter of time before I can leave my cane in the corner. My legs feel stronger, but stilll ache a lot at the end of the day.
I read the nightmares that so many of you are experiencing and wish you all a speedy resolution to your insurance nightmares. My next infusion is September 12. Will keep you posted.
Over the last six to eight months I noticed my speech was being effected. I always had a problem with blocking, but it was getting noticably worse. Since the infusion, I am improving on that front. I have also had my best workouts ever. I workout on a Total Trainer (similar to a Total Gym) and have done more reps at a higher weight in the last month than I have since purchasing it in February.
My walking has improved slightly, but I would like to think it's only a matter of time before I can leave my cane in the corner. My legs feel stronger, but stilll ache a lot at the end of the day.
I read the nightmares that so many of you are experiencing and wish you all a speedy resolution to your insurance nightmares. My next infusion is September 12. Will keep you posted.
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