start of 3rd year of tysbari

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gimp79
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Date Joined Jul 2011
Total Posts : 16
   Posted 6/11/2012 4:19 PM (GMT -6)   
today started my 3rd year on tysabri...had an mri last week and everything looked good so tysabri is working for me...not even thinking about pml right now....after having 3 accute exacerbations it is a relief to finally have things under control...still waitin for a new oral to get fda approved but not sure if my insurance will cover that....since i have been stable for 3 years no ms worries right now thank goodness....so to have rambled just needed to share....barb 

Gretchen1
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Date Joined Jan 2007
Total Posts : 3556
   Posted 6/13/2012 5:32 PM (GMT -6)   
Barb! I can't believe it's been 3 years already! I am so glad you are doing so well! Keep up the great work!
Diagnosed with MS July 2006

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

Tranquilrain
Regular Member


Date Joined May 2012
Total Posts : 48
   Posted 6/14/2012 6:22 AM (GMT -6)   
The new MS pill has been on the market for about 2 years now. It's called Gilenya. Is that what you are talking about? congrats on Tysabri!!!!!

Gretchen1
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Date Joined Jan 2007
Total Posts : 3556
   Posted 6/14/2012 4:28 PM (GMT -6)   
I think Barb is talking about BG-12. It's the oral med that is probably next to be approved. There are several other oral meds in trial as well. BG-12 touts fewer dangerous side effects that are identified with Gilenya.

Tranquilrain
Regular Member


Date Joined May 2012
Total Posts : 48
   Posted 6/16/2012 5:14 AM (GMT -6)   
good to know! I didn't know of any other oral medicine, thanks! My Neuro. never told me

gimp79
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Date Joined Jul 2011
Total Posts : 16
   Posted 6/18/2012 7:12 AM (GMT -6)   
yes gretchen bg-12 is the one...it could be approved by march 2013...then we take it from there to see about the insurance.the 3 years really did fly by.....an oral would be much better to take but either way i am enjoying no flare ups..barb

Singingsupernurse
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Date Joined May 2012
Total Posts : 118
   Posted 7/2/2012 10:38 AM (GMT -6)   
gimp79- can I ask...where you on disease modifers that didn't work and that's why the put you on Tysabri? I can't convince Doc to put me on it. Copaxone works well,however, I now have Crohn's Disease and can't go on diease modifers for that b/c of MS....Thought Tysabri would kill two birds with one stone so to speak
Thanks and Congrats!!!!!
Those that do not learn from history are doomed to repeat it

Gretchen1
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Date Joined Jan 2007
Total Posts : 3556
   Posted 7/2/2012 2:05 PM (GMT -6)   
Hey there, Nurse. Barb was on other treatments......but I can't remember which one. Copaxone perhaps?? She doesn't post often. I hope she pops in and sees this. I think doctors are concerned with the risk of PML. That risk seems to increase after a couple of years. Tysabri is a miracle drug for many and a death sentence for a few. The problem is no one can predict who will do what! Tysabri seems like it would be a reasonable option for you!
Diagnosed with MS July 2006

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

Singingsupernurse
Regular Member


Date Joined May 2012
Total Posts : 118
   Posted 7/7/2012 2:46 PM (GMT -6)   
Yes I think they will probably pull it from the market b/c of the PML. MS is stable the Crohns is bad. Knowing my luck, I would end up with PML or JC antibodies (people have ended up with them too.) Thanks Gretchen1 Ive had MS since 1999
Those that do not learn from history are doomed to repeat it
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