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.

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

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)

Neutrophils 700 without neupogen sorry my bad

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)

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

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

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

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

jlouherr | @jlouherr | Oct 15 6:03am

In reply to @joanmroby "My platelets are improving I don’t destroy them as quickly as before Maybe God is healing..." + (show)

@joanmroby I hope that you continue to improve. I have had pancytopenia since February 2025, diagnosed and treated as autoimmune aplastic anemia with cyclosporine and promacta (to promote platelet production). Discontinued cyclosporine because of severe side effects and no improvement. I continue to need platelet and rbc infusions. Have you had any treatments other than neurogenic injections and infusions?

joanmroby | @joanmroby | Oct 16 10:14am

In reply to @jlouherr "@joanmroby I hope that you continue to improve. I have had pancytopenia since February 2025, diagnosed..." + (show)

@jlouherr wow we both started on the same month
Promacta did not work at all for me
No other treatments used except antibiotics and antifungal meds for protection around March as neutrophils were 300
My whole church is praying for me
My T cells might be the issue but no diagnosis
There is a substitute for cyclosporin if I regress called micro something
Where do you live I’m in Calif
Now I’m making my own platelets slowly
Up to 32,000🤗

joanmroby | @joanmroby | 1 day ago

God is healing me🙏
I haven’t needed plateletes transfused for three months now
Plateletes are 27,000
Neutrophils 800
Hemoglobin 12.5
Thankful to God
I can go running and hiking
Praying for more recovery
No treatment at this time

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