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@MiaPi 

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MiaPi

PML risk with OCREVUS or Cladribine

Hi All, I had written a while ago mentioning that I have been recommended to switch from Copaxone to Tecfidera. Well, I decided not to, without first getting a second opinion. I am still waiting for this second opinion apt which apparently is going to take a couple of months.. The reason I decided not to start immediately, apart from being a bit scared of the potential side effects (GI upset etc) is that that I am also a bit worried about PML. I have been doing some reading, and, apparently, even with lymphocyte monitoring, the risk, even though low, is not zero, as developing PML or not seems to be a more complicated situation, dependent on a lot of different variables. I am currently considering either Ocrevus or Cladribine (I have to find a doctor to agree on this first however as my current one doesn’t recommend them), and I wanted to ask: To those who have been prescribed either of the two (Cladribine and Ocrevus): what have you been told about PML and preventing it? My doctor’s team refuses to give much information on these two drugs as they say that ‘we will discuss details only if you absolutely need to be on those drugs, but for now we recommend Tecfidera, so we can discuss only about that.’ Thank you beforehand for any replies.
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@Golgotha
@Golgotha
 

From what I understand (meaning mine is a PhD and not an MD and I'm recalling this off the top of my head and could be wrong), Ocrevus did have a person get PML -- but that patient was using *both* Ocrevus and another DMT drug. I'm pretty sure a PML risk is listed on the huge list of possible side effects of Ocrevus. What my doctor explained to me is that the JCV risk/level can be monitored and shifted away from if the risk becomes too much. This doctor's "thought experiment" about PML is worth considering as you ponder these issues: https://www.youtube.com/watch?v=nMVmJh12SZA And if you go to his YouTube channel and search for PML you'll find that MS-specializing neurologist has several videos on PML (and the DMT drugs you're considering). @miapi > they say that ‘we will discuss details only if you absolutely need to be on those drugs, That seems like a silly attitude. I generally want as much info as possible *before* making a decision.

@MiaPi
@MiaPi
 

As a patient, having to go on forums to find answers on questions that should be answered by the medical team who is treating me makes me feel frustrated. Your reply is highly appreciated @golgotha. May I ask how you are being monitored for the virus while on Ocrevus? Are you having a JVC test periodically? Also, may I ask whether along with your absolute lymphocyte count your doctor is also monitoring the different ratios of the lymphocyte subtypes? Thanks again.