Waldenstrom's Macroglobulinemia Community
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Rituxan - Danger

I have been treated withRituxan for some time. So I was surprised when I heard on CNBC this morning that this drug was found, according to a drug company whose name I did not get, to cause a rare brain disorder in some patients to whom it was given. Does anyone have any information about this??
7 Responses
264121 tn?1313029456
I don't have info on it, but let me see if we can get an answer from one of the docs.
Avatar universal
Thanks for responding to my question - the only person to do so in 5 days!  This raises serious questions in my mind as to the value of this site. If there are no knowledgeable people, including any doctors or drug experts  using it or supplying information then it  is of doubtful utility.
The  "good news"  is my own discovery that the rare brain condition,PLM, which is apparently fatal and incurable has been known for a long time and is referred to on the main site I found regarding Rituxan. It seems, however, that this danger is not disclosed by many  doctors ( including mine )  despite its mortal nature. Oh, well - is ignorance bliss??
Avatar universal
I have no actual info on this only that my husband was put on it for treatment and had incredible pain starting right off. The second treatment he developed hives half way through the treatment. 3 and 4th he never made it through the whole treatment and was promtly taken off the chemo routine. So it's interesting to hear this cause I think our grandson of 9mos at his treatment time for a rare brain cancer pinealblastoma was also treated with this drug. Our grandson is now 2 the tumor is gone and to date no sign of cancer.
Avatar universal
Check out Rituxan when given for lupus. I think that's were the rare brain disorder comes in, not when Rituxan is given for WM.
264121 tn?1313029456
Here's the FDA information on it:


I think there were two deaths in lupus patients out of an estimated 10,000 people using the drug for lupus.  It is also used for the treatment of cancer and arthritis.  
Avatar universal
it's Progressive multifocal leukoencephalopathy or PML

Progressive multifocal leukoencephalopathy (PML) is a rare disorder that damages the material (myelin) that covers and protects nerves in the white matter of the brain.  You can wikipedia it and obviously talk to the doctor that is giving it to you.  You could request being tested for the JC Virus as well which is offered to MS patients for Tysabri and Rituxan treatment which both carry a PML risk.   (I've been told that Tysabri's risk is much higher than Rituxan.)
Avatar universal
IO have read something to that effect, but from what I read, it is a RARE condidion
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