Tysabri Users: please share

[JonM]

Would like to hear from anyone who has taken or is taking Tysabri.  Like to know how you have faired, your experience with it and whether it has helped?

Thanks
jon

[JonM]

Thanks for the link, I read both.

I have been told by my doctors this anecdotally about progressive not being as bad as many of the web sites make it sound.

Jury is out on me because I presented with sensory and motor symptoms simultaneoulsly a year ago.  I still have the damage from the T spine lesion that has caused a large area of numbness, itching and pain on my right abdomen.  

The only symptoms that seem to have increased since my exacerbation a year ago is increased variability in the ringing in my ears, cognitive issues and headaches, and a heaviness in my legs.  Some of this may be attributable to the ADs and to my anxiety.  So all in all I definitley haven't progressed rapidly, but maybe slowly.  But then again I don't know what slow is???

Thanks again
Jon

[Quixotic1]

The link would be helpful, I suppose:

http://www.mscare.org/cmsc/index.php?option=com_content&task=view&id=570&Itemid=181

[Quixotic1]

Hi, all, I'm still not up to prolonged time at the computer, bt, as usual still had to see what was going on.

Jon, I misremembered, the Tysabri info.  It was increased "lesions" after discontinuing, not "disability."  I'm so sorry.  Here is the link to one of the articles I read.  I hope a lote of people see this becasue there are articles on this page pertinent to just about everyone!  

Jon, make sure you look at the first article listed also.  I have read similar info in several places.  Our advanced age may not work against us. Q

[JonM]

I feel I'm at higher risk than most to progress more rapidly.

a) I was 47 when first diagnosed
b) I'm a male
c) my first symptom was weakness in my arm
d) my first full blown exacerbation was multi-symptom, multi-system including significant weakness in my right leg
e) my first brain MRI noted mild brain atrophy
f) recent cognitive issues that is affecting my abilty to do my job

I'm intrigued by Tysabri, because statisticaly its twice as effective as any of the interferons, and highly effective in restoring the blood brain barrier, keeping those nasty T-cells out.

I was certainly aware of the PML scare, but that appears to only been an issue for those on two+ DMDs.  As a mono therapy there appears to be no PML risk.

Quix, you have mentioned something that I had not heard before and I would sincerely appreciate if you could provide a web link or two to resources that state what you did about progression accelerating after ceasing therapy.

Much Thanks to All !!!
Jon

[pennst8r]

I talked to my sister re why she was put on tysabri. She received a letter from her insurance company stating that the request to have it paid through them had been approved. She had no idea she was changing form the daily injections thatshe had only started a few months earlier. Her neuro (one that we roasted on my behalf, but she's been with him for years and just doesn't want to learn to tolerate a new one) apparently made the decision without her input - not at all out of his character. My sister, being even less assertive than I, never quesitoned it. She is doing quite well though. I wish there were a less bizarre rationale, but alas...

Penn

[Quixotic1]

The only thing I'm concerned about, are the recent reports of rapid progression of diasability after stopping Tysabri.  There were many such reports, which trickled in over the year+  after if was pulled from the market.  I haven't read anymore on these, but I think they should understand what happened, before many more people go on it.  On the other hand, it was reportedly quite effective.  There is info on the on the Nat'l MS Society site.  Q

[Momzilla]

Has it been recommended for you, Jon?  Are you interested in it?  How have you been feeling?  I want some answers!  

I hate to sound like that, but it has kind of a history.    I know it was voluntarily pulled from the market for a while, which is not necessarily a bd thing.  I look at stuff like that as part of my job, and I understand there are good reasons for that.  Just wondering what's going on.

Zilla*

[JonM]

I would like to know what criteria the Nuero used to decide that this was the best course for her?
Thanks
Jon

[pennst8r]

One of my sisters goes for IV tysabri monthly; started about 4 months ago. Seems to be going well. If you have any specific questions, I can ask her. Have told her re the forum, but she's not exactly computer-literate. I'm off to CCF in the morning, but expect to be back by night and will likely talk to her.

Penn