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JUST FOUND OUT I HAVE JC VIRUS
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LACIBACI posted:
BEEN ON TYSABRI FOR 3 YEARS WITH GREAT SUCCESS. JUST FFOUND OUT I HAVE THE JC VIRUS. MY DR WANTS ME OFF
TYSABRI NOW. I REALLY DONT WANT TO STOP AS IT HAS BEEN
WONDERFULL TO ME.
WHAT TO DO?????
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Neil S Lava, MD responded:
When you become JC virus positive you are at increased risk to develop PML. We don't have a lot of data on people taking Tysabri for longer than 3 years and I understand why your doctor is concerned.
As you know there are other medications that can be used in place of Tysabri but Tysabri still is one of the most effective medicines we have.
You should sit down and talk with your doctor about your concerns and see if you can work out a compromise.
 
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caregiver41 replied to Neil S Lava, MD's response:
I have been on Tysabri for 4 years It doesn't work on me that way but I don't get side effects like I do with other Meds. I too am JC positive my doctor keeps checking for PML signs. He has never talked to me about coming me off Tysabri. I guess you have a better more concerned doctor, who worries about your health then I have your lucky. Good luck on a different Med.
 
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Nancy04232004 replied to Neil S Lava, MD's response:
My test for JC virus also came back positive, yet my doctor wants me to still take Tysabri. She told me that she has several patient who are also taking Tysabri and are JC positive and they have not had any problems. With that information, she is going to monitor me more closely.


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