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Question for Sandi re: PML

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15 years 2 months ago #7251 by Michelle
Question for Sandi re: PML was created by Michelle
Sandi, I can't locate a prior thread - but I remember you mentioning a person that you knew of who got PML and passed. I think you said she was the wife of a member of these boards.

I was wondering - had she undergone a splenectomy?

- Chelle
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 2 months ago #7270 by Sandi
Replied by Sandi on topic Re: Question for Sandi re: PML
Oh - no, she got sepsis, not PML. She was on a fairly low dose of Prednisone, had used Rituxan and had a splenectomy. The bad thing was that it was quick - 24 to 36 hours from the time she got ill to the time she passed. Very sad story.
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15 years 2 months ago #7284 by Michelle
Replied by Michelle on topic Re:Question for Sandi re: PML
Oh, my mistake - I thought you had said PML.

So have you ever known of anyone who got PML? I know it's very rare -

And one more random question - Does anyone know if Rituxan is known to cause changes in any of the other blood components than just the platelets? Like white blood cells or red blood cells, etc.

My search has not led me anywhere on this topic.

I guess these questions are for everyone, not just Sandi now. :)
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15 years 1 month ago #7294 by lili
Replied by lili on topic Re:Question for Sandi re: PML
Well, Rituxan works by destroying certain white blood cells. It's an antibody to something on the white cells and when the antibody binds to the cells, it causes them to be destroyed. Just like the antibodies to the platelets cause them to be destroyed in ITP. So your white blood cells will drop after a rituxan treatment.

Presumably these white blood cells affect the antibodies against the platelets that cause ITP in some way, but I don't think it's well understood how rituxan works.

Lily
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 1 month ago #7300 by Sandi
Replied by Sandi on topic Re:Question for Sandi re: PML
Michelle:

No, I do not know of anyone who had PML, thankfully.

I've read the list of side effects that Rituxan can cause, and I believe that low red cells, white cells and platelets were on the list. That doesn't mean it will happen though. Rituxan does destroy B cells and T cells which are lymphocytes, a type of white cell. It usually doesn't cause much harm though. My lymphocytes were always in normal range during and after Rituxan, as were my other white cells.
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15 years 1 month ago #7307 by Michelle
Replied by Michelle on topic Re:Question for Sandi re: PML
My white blood cells are just a smidge under the normal range - so it looks like from what you are all saying that it actually could be due to the Rituxan.

Okay, I have officially decided not to freak out. :)

Thanks everyone!

Sandi - So happy to hear you've never run across someone who got PML. :)
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 1 month ago #7323 by Sandi
Replied by Sandi on topic Re:Question for Sandi re: PML
Michelle:

A smidge under normal range is nothing to worry about, I assure you.
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