Does anyone have prca?

[kaboaboa]

I have been diagnosed with it for almost 2 years, I have tried many types of treatments, only to have my doctors tell me they can't do anything for me for fear of loseing another blood line. I'm transfusion dependent.

[triumphe64]

This is my first post.

I've had PRCA since March 2005. I discovered it when donating blood after donating Dec 30, 2004. Treatments were successful until December 2007 or Jan 2008. I now have had monthly transfusions.

I'm just trying to find out as much as I can about this.

[Neil Cuadra]

Welcome, triumphe64.

What treatments have you had?

[triumphe64]

Originally Posted by Neil Cuadra

Welcome, triumphe64.

What treatments have you had?

It took three bone marrow biopsies before PRCA was determined. This was after the sample was sent to the local medical school.

My PRCA is from autoimmune causes, so treatments are designed to lower my immune system.

IVIG - This worked but took time, costs lots of money, and only lasted about three weeks.

Cyclosporine/Prednisone in various doses. This worked until I had surgery on December 4, 2007. Now we are trying increasing the dose of Cyclosporine.

Also various treatments to prevent loss of blood from hemorrhoids and urological causes.

I also got shingles from the lowered immune system and now have postherpetic neuralgia (but not too bad).

[Lbrown]

I was diagnosed with PRCA Jan 2009. I tried cyclosporine for 7 months and it didn't work. I have no faith in the next treatment of chemo or ATG.

Has anyone been treated with chemo or ATG for PRCA, and did it help? How did the treatment affect you? Was your WBC low as well?

Right now I'm transfusion dependent, every 2 weeks.

WBC 1.1
Neut .48
HGB was 75 before transfusion
RBC 2.49

Retic counts have all been around 48, which is in the normal range which I don't understand.

Thanks.