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Old 09-30-2012, 08:09 AM
4-eyes 4-eyes is offline
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Join Date: Aug 2009
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15 yr Member
4-eyes 4-eyes is offline
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Join Date: Aug 2009
Posts: 642
15 yr Member
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I was offered Rituxan a few years ago. At that time, you had to have at least 3 other documented treatment failures of other things before you could move on to Rituxan. I had that, but then there was the "little" issue of PML.

PML is caused by the reactivation of the JC virus, that lies dormant and harmless in a large percentage of the population. If it gets reactivated, it is devastating and most usually deadly. That was enough to make me refuse the treatment, especially when the neuro said she doesn't know that she would do it if she was the patient!

You can now have a test for the JC virus prior to treatment. If you find that you test positive, then you would have to really think if you wanted to take the very small, yet potentially deadly risk. OTOH, Cellcept and even pred also carry the risk of JC virus reactivation, and I take both of them (which made me more reluctant to do the rituxan at the time).

The 100 mg of steroids given with the treatment is typical protocol when receiving a chemotherapy agent, which rituxan is. It helps with the side effects and helps to enhance the treatment. Once again, that's a risk you'd have to take, but it is not necessarily "bad treatment." I have a friend who did Rituxan, but got the steroids deleted from the protocol. Interestingly, she got ZERO benefit from the Rituxan.

All in all, it is more typical to do IVIG, plasmapharesis, oral steroids or an immune suppressing drug before going on the rituxan or cytoxan or high dose cytoxan (which I eventually did). Sounds like you need to do some research and either email or have a long talk with your neuro, to make sure you're on the same page.

Good luck.
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RavenC (10-01-2012)