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Originally Posted by Natalie8
I wonder why no one being treated for Crohns disease has gotten PML. Maybe the numbers are just lower in terms of total taking drug? I see my neurologist tomorrow. I have plenty of questions to ask about Ty and PML. I'll let you know what I find out. I'm curious to know what she thinks of the CCSVI theory. Enjoy the day! 
RW: Thanks for the extremely useful information. I guess the aren't willing to or can't speculate on the risk above 24 months? What do you think? |
I know of one Crohn's patient from Belgian that got PML while on Tysabri and unfortunately died.
He had been involved in the Tysabri clinical trials with Crohn's but was on the placebo. Months later, he was given the actual drug and within 6 infusions, became very sick and died quickly. His initial cause of death was attributed to a brain tumour but subsequent investigation changed that to PML.
Biogen stated that he got PML because he had taken two different kinds of immusuppressants prior to using Tysabri but his family stated that those drugs had been stopped 8 months earlier and the patient was in good health other than from the symptoms of Crohn's.
I'm not sure if there is any other recorded incident of PML with Crohn's patients using Tysabri since that time.
Harry