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Anyone have idiopathic pancytopenia?

Posted by joanmroby @joanmroby, Aug 10 8:13pm

I have idiopathic pancytopenia since Jan 2025
Normal bone marrow biopsies x 5
Getting 3&4 opinions in 10 days
? Autoimmune disease?

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catherine1290 | @catherine1290 | Aug 11 6:56pm

I was given Azothiaprine when I was first diagnosed with fistulizing Crohn's in 2018. Within two months I had pancytopenia so it was stopped. Everything went back to normal except the platelets which are still low at 77,000.

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joanmroby | @joanmroby | Aug 13 5:43pm

I have idiopathic pancytopenia now for six months with normal bone marrow
My platelets go down to 7,000 without infusions
I would love to have 77,000
Hemoglobin 700 without neupogen sub q
Getting a consult with Mayo Clinic next week🙏
Neutrophils

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joanmroby | @joanmroby | Aug 13 5:44pm
In reply to @joanmroby "I have idiopathic pancytopenia now for six months with normal bone marrow My platelets go down..." + (show)
Profile picture for joanmroby @joanmroby

I have idiopathic pancytopenia now for six months with normal bone marrow
My platelets go down to 7,000 without infusions
I would love to have 77,000
Hemoglobin 700 without neupogen sub q
Getting a consult with Mayo Clinic next week🙏
Neutrophils

Jump to this post

Neutrophils 700 without neupogen sorry my bad

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joanmroby | @joanmroby | Aug 24 3:39pm
In reply to @colleenyoung "@joanmroby, welcome. I moved your question about idiopathic pancytopenia into its own discussion in the Blood..." + (show)
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@joanmroby, welcome. I moved your question about idiopathic pancytopenia into its own discussion in the Blood Disorders support group. Pancytopenia is a condition that occurs when a person has low counts for all three types of blood cells: red blood cells, white blood cells, and platelets. While pancytopenia is not an autoimmune condition, some autoimmune conditions can cause pancytopenia.

I'm tagging a few members like @tyson1221 @peach414144 @catherine1290 @darlas1967 who have experience with pancytopenia to join this discussion.

Joan, when do you start treatment with Rituxin? How are you feeling?

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I’m holding off on the Rituxin
Got two more opinions one at UCSF one at Mayo
Waiting for bone marrow bx results
God is healing me as I wait
Two doctors may suggest Cyclosporine
I’ll let you know

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joanmroby | @joanmroby | Aug 25 4:30pm

Just got back from Mayo Clinic
Dr quite excellent
Will have video visit to discuss bone marrow bx results next week
Meanwhile platelets improving
Maybe God is healing me
Maybe it’s aplastic anemia retreating

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joanmroby | @joanmroby | Sep 25 11:59pm

I am now making my own platelets red blood cells and neutrophils
No treatments given since I’m improving
God is healing me

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joanmroby | @joanmroby | Sep 26 12:08am

Just read Amlopidine can lower platelets! Amlopidine is blood pressure med
I’m going to ask my Dr to let me get off Amlopidine check platelets in a week and maybe get another pressure rx

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