I’m going on tysabri next week. It will be extended dosing as I have a high JC virus count I’m so scared anyone else on this or have a high JC count? I’m so scared of PML. If caught early can they stop it?? Can anyone help a very stressed out young mother
I’m not on Tysabri, nor any other DMD. But I do know that regardless of JCV status, no one has developed PML within the first 2 years of Tysabri. And the fact that the clever doctors have worked out that the drug works just as well on extended dosing (stretching the period between doses for those who don’t know) means you have even longer than before before starting to worry about PML.
In other words, start Tysabri, feel confident that you are taking a very big stick to MS and using it to clobber the hell out of it. Let the neuros do their stuff and start worrying about PML when they start retesting your JCV status and asking you to make a decision about staying on it or not.
I think Sue is right. There are protocols to follow in the case of PML but you should discuss your valid concerns with your neurologist who should be straight with you about the risks and procedures avoid or deal with PML. I hope that you have good communication (both ways) with your medical team so that you can build the confidence to be comfortable with your treatment plan. Wishing you all the best