PML concerns
Hello,
Does anyone on Ocrevus or Kesimpta worry about developing PML. I've been advised to take one of these but given the risks of PML, which I think is incurable, I'm really worried. The MS nurse didn't seem too concerned but how can we not be?! Is it just me or am I overthinking it? I know it's a 0.1% chance of getting it but there was 0.5% chance of ms...but I got that 😞
Thanks
Yes. I do worry about PML. I scored quite high apparently in the JCV test. (I'm currently on Kesimpta, previously on Tecfidera) I always remember my neuro telling me before I started on Tecfidera, that any changes in my personality should be reported to the MS team. This has always made me think as time goes on that my anxiety issues and depression, which rears it's head from time to time, could actually be the early stages of PML. At present I have no other symptoms of possible PML so trying not to worry too much. MS is such a crappy disease that if its not affecting you physically at the moment, then it is probably affecting you mentally somehow.
From the reading iv done, getting PML on Kesimpta, assuming you have no other immune issues, would be like being struck by lightning. Ocrevus is similar. You don't need to worry about PML.