Anyone have idiopathic pancytopenia?

Posted by joanmroby @joanmroby, 3 days ago

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

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

I'm sorry that you are going through this I will keep you in my prayers. I have no idea what you're going through so I can only know what I go through nobody's the same I wish you well I wish that there was something I could do for you to make you feel better

REPLY

Was this diagnosis based on a CBC blood panel showing red, white and platelets blood cells low? Not familiar with this disease. I always dislike the term idiopathic, Are you being treated? Does it have something to due with a deficiency like B'-l2. You should create a new discussion where you will probably get some responses from individuals with knowledge of pancytopenia.

REPLY
Profile picture for 0620 @0620

I'm sorry that you are going through this I will keep you in my prayers. I have no idea what you're going through so I can only know what I go through nobody's the same I wish you well I wish that there was something I could do for you to make you feel better

Jump to this post

God is helping me.Jesus is real to me.God is sovereign.Getting two more opinions in ten days
Anyone else have idiopathic pancytopenia?I get infusions of platelets twice a week

REPLY

@joanmroby Welcome to Mayo Clinic Connect! I’m glad you found us! I must say, though, that pancytopenia is a disease of the blood system , not autoimmune diseases. Has someone told you that pancytopenia is an autoimmune disease ? Let’s see if other members can jump in and tell their experiences with pancytopenia!

REPLY
Profile picture for dstone501957 @dstone501957

Was this diagnosis based on a CBC blood panel showing red, white and platelets blood cells low? Not familiar with this disease. I always dislike the term idiopathic, Are you being treated? Does it have something to due with a deficiency like B'-l2. You should create a new discussion where you will probably get some responses from individuals with knowledge of pancytopenia.

Jump to this post

How do you start a new discussion?
I get treatment of symptoms by getting platelets 2x week
Injections of neupogen and occasional rbc infusion
Thinking of Rituxin I’ve
Will wait for other opinions

REPLY
Profile picture for Becky, Volunteer Mentor @becsbuddy

@joanmroby Welcome to Mayo Clinic Connect! I’m glad you found us! I must say, though, that pancytopenia is a disease of the blood system , not autoimmune diseases. Has someone told you that pancytopenia is an autoimmune disease ? Let’s see if other members can jump in and tell their experiences with pancytopenia!

Jump to this post

Sorry my local Dr thinks the cause of my pancytopenia is an autoimmune disease
He is suggesting Rituxin IVx4 for it

REPLY
Profile picture for joanmroby @joanmroby

How do you start a new discussion?
I get treatment of symptoms by getting platelets 2x week
Injections of neupogen and occasional rbc infusion
Thinking of Rituxin I’ve
Will wait for other opinions

Jump to this post

@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?

REPLY
Profile picture for joanmroby @joanmroby

How do you start a new discussion?
I get treatment of symptoms by getting platelets 2x week
Injections of neupogen and occasional rbc infusion
Thinking of Rituxin I’ve
Will wait for other opinions

Jump to this post

@joanmroby Question: how to start a new discussion: Go to the top of this page, near the top, in blue letters, it says ‘start a discussion’. Follow directions as they are given. Hope this is helpful! You can always send to me first and I’ll check for any mistakes, private message is becsbuddy

REPLY

I haven’t started Rituxin
We are getting two more opinions one from Mayo

REPLY

My platelets are improving
I don’t destroy them as quickly as before
Maybe God is healing me

REPLY
Please sign in or register to post a reply.