Anybody taking Cellcept?

    • Anonymous
      April 10, 2008 at 5:29 pm

      check this out

      Anti-rejection drug linked to often-fatal neurological disease

    • Anonymous
      April 10, 2008 at 7:42 pm


      It’s going to be very interesting what is made of this.


    • Anonymous
      April 11, 2008 at 1:05 am

      Very interesting Julie, and timely for us. We have to go before the IVIG committee to say why husband doesn’t want to go on Cellcept, and that he just wants to carry on with IVIG as he is responding well to it. Thanks!

    • Anonymous
      April 11, 2008 at 2:38 am

      This disease, progressive multifocal leukoencephalopathy (PML), is not specific to CellCept. Tysabri, a drug similar to rituximab and used in the treatment of MS, also increases the risk of PML. Other drugs appear to do so as well.

      From the NINDS website: Progressive multifocal leukoencephalopathy (PML) is caused by the reactivation of a common virus in the central nervous system of immune-compromised individuals. Polyomavirus JC (often called JC virus) is carried by a majority of people and is harmless except among those with lowered immune defenses. The disease occurs, rarely, in organ transplant patients; people undergoing chronic corticosteroid or immunosuppressive therapy; and individuals with cancer, such as Hodgkin’s disease, lymphoma, and sarcoidosis. PML is most common among individuals with acquired immune deficiency syndrome (AIDS).

      If one needs immunosuppression, then one must weigh the risks of CIDP vs the risk of PML. If IVIg works, then immunosuppression is probably not as important. Still, the costs must be weighed: $2000/month for CellCept vs. $8000+/month IVIg. If one has an insurance maximum, beyond which it will not pay, then maybe CellCept (or other immunosuppressants) is an option that must be considered.


    • Anonymous
      April 11, 2008 at 8:07 am

      I have just started Cellcept and still get IVIG every other week. The goal was to decrease the IVIG at some point…