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What to do?

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8 years 8 months ago - 8 years 8 months ago #58089 by Sandy Too
What to do? was created by Sandy Too
Good morning all. I hope you are doing well. It has been a while.
Since my last post I have done three rounds of Rituximab. I am back to my regular replacement dose of prednisone 7.5 mg, for Addison's Disease and my platelets hover from 414, 399, and this week 422. So it appears the infusions are working.
I was unable to do my last infusion on Jan 31 due to a sinus infection. I am scheduled to have it on Feb 14.
But I am very unwell. I saw my rheumatologist this past Wednesday and was told I am in a fibro/lupus flare.
It sure feels like it. But I am confused as I thought that being the platelets are up it meant that my immune system would be shut down too and therefore could expect my lupus/connective tissue issues/flares would be as well?
Regardless at this point I am thinking should I be taking the last infusion? It's a bad flare.
I was given some muscle relaxant, Baclofen and Meloxicam anti-inflammatory, that so far has not improved anything.
I have another unusual symptom as well, itching that is driving me crazy.
I just feel I need to hold off the Rituximab or even cancel. I have not seen my hemo since October, usually only hearing from her through her reception by phone which is also strange to me.
Your thoughts much appreciated. Sandy Too
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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8 years 8 months ago - 8 years 8 months ago #58091 by mrsb04
Replied by mrsb04 on topic What to do?
With a platelet count in excess of 400 if it were me I think I would hang on and see what happens to platelet count. I believe skin itching can be a result of rituximab.
  • 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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8 years 8 months ago #58094 by Sandi
Replied by Sandi on topic What to do?
Hi Sandy! I was wondering about you. If it were me, I'd skip that last infusion completely. It's not needed. Based on studies that I've read, Rituxan doesn't do much for Lupus. I know many cases where it actually stirred things up. Your counts are great!
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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8 years 8 months ago #58099 by Hal9000
Replied by Hal9000 on topic What to do?
You ended up taking Rituxan? Oh my, didn't expect that. The platelet count is very nice. Congratulations. Sounds like a nice long remission may be in order there - having such an immediate count response.

As for the itching, were you tested for the various Hepatitis types before Rituxan? I think all/most of the types cause general itching. Is the itching all over? Also, did the doctor say Baclofen or Meloxicam could cause itching?