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Old 08-14-2015, 04:53 AM #15
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Kitty Kitty is offline
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Kitty Kitty is offline
Wisest Elder Ever
Kitty's Avatar
 
Join Date: Jan 2008
Location: Deep South
Posts: 21,576
15 yr Member
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I've discussed the pros and cons of Tysabri with my family (both boys and DIL) and they are concerned about the risk of PML.....especially since I am JCV positive.

I found an article that seemed pretty neutral but gave the hard facts about PML and the risk factors for JCV positive patients. It was a little scary to read I have to admit but I wanted them to know the facts.

They (well my boys at least) have already been through enough with the loss of family members and I don't feel I can risk putting them through another stressful situation for 2 years while I roll the dice with Ty. So it's a no-go for me.

While researching other MS drugs I found that many of the newer oral drugs also carry the PML risk. I was shocked! I remember specifically asking my Neuro if Tecfidera carried a PML risk and he said no. Well, I found a case of someone contracting a non-fatal case of PML after taking Tec! What the what???

http://www.medpagetoday.com/Neurolog...clerosis/52622.

Now not only do I have concerns about the safety of the MS meds but I question my Neuro's advice on everything now. He put me on Tec BEFORE testing me for the JC Virus!!! I think it's time to look for another Neuro. My confidence in him is gone now. His alternate drug to Ty was Gilenya. Well, looky what I found on it.....

http://www.fda.gov/Drugs/DrugSafety/ucm456919.htm.

I'm not sure where to turn or what to do.
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