J C virus and tysabri

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New Member

Date Joined Jul 2011
Total Posts : 16
   Posted 7/7/2011 12:49 PM (GMT -6)   
it has been such a long time since i have posted..i was pokey79 before an isp change.any how i have a question about the jc virus and how long it is safe to stay on tysabri. my dr. says it is safe to stay on it for 2 yrs.i am already at 1 year..i just had an mri and it is working. which puts me in a state of wondering..he says tysabri is 70% effecftive in slowing progression and after the times i had i am thinking it is worth the risks.gellinea (spelling) is an option it comes in at 50% .has anybody else had this problem? what used to be a trip to the doc was every 6 months is now 3 what used to be an mri once a year might be once every 4 months to keep ahead of pml. if thats possibe.any information anybody can share will be appreciated..thanks...barb

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Date Joined Jan 2007
Total Posts : 3571
   Posted 7/7/2011 6:56 PM (GMT -6)   
HI BARB!!!!!!

I am so glad to see you here again! I am sorry I don't have any answers for you. You might want to post on MS world. They have a whole place for tysabri people. I know that your risk for PML increases the longer you are on it. Did you test postive for the JC antibodies? The gilenya is supposed to be the next best bet but wow have a few side effects. Lots of liver and eye testing.

I am glad it's working for you. I do know one lady who is at the point of having to stop tysabri. She is going with copaxone and pulse steroids afterwards. She found a study that showed good efficacy with that combo.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

New Member

Date Joined Jul 2011
Total Posts : 16
   Posted 7/7/2011 8:06 PM (GMT -6)   
hanks Gretchen, its good to be back!! my doc is wanting to wait as long as we can. and maybe new orals will be out..yes i tested positive for the virus. always something.but on a good note i didnt light up on the mri..course i dont get around like i did before either :( but ya have to do what ever you can to at least try to fight it.and right now the tysabri is doing the trick so i have a little time yet and we will see luckily they are working on new meds. every day. thanks again.. Barb
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