Low hemoglobin, low reticulocyte, and blood clots

[gina66]

I was positive with Parvovirus infection, blood clotting (protein C is positive), also 2-3 % abnormal monoclonal B cells based on bone marrow biopsy. I have been getting blood transfusion since I was hospitalized in ICU unit for low hemoglobin (2.8). Prednisone was not working due to infection from Parvo. Infection was negative after IVIG treatment for 3 days since June 2012. Still my hemoglobin goes down, reticulocyte count way below normal, still having blood clotting although my platelets count was just a little bit higher than normal level. I tried Cyclosporine, 300 mg/day but it built up in a month that I had toxicity signs and symptoms. I stopped taking it. Last Sept 2012, I had negative PET scan test result. Doctors were thinking about prescribing Rituximab or the other chemo pill but decided I should try Cyclosporine again in a less dosage, 100 mg/day. Tried Cyclosporine for more mos., no progress with my hemoglobin.

[triumphe64]

You have a complicated set of symptoms, but I will give you my two cents.

Some of your symptoms show it could be pure red cell aplasia. It can be caused by parvo virus. The reticulocyte count is low resulting in low red cells and hemoglobin counts.

The clotting is not one of the symptoms of PRCA, but it is a symptom of PNH. Many of these bone marrow illnesses overlap. I'm not sure how the B cells fit in.

I have PRCA. The IVIG worked for me too, but it only lasted for three weeks or so before I needed another.

[gina66]

Triumphe64, Thank you for your reply. Dr's. actually diagnosed me with secondary PRCA because RBC is the only low blood cells I have. They have checked me with PNH but negative (cd55 and cd59). I may ask them to re-do the test again if no improvements with Cyclosporine in 2 mos. My Retic counts sometimes went up briefly. They said I do not fit the Hemolytic anemia. I am not anemic and no hemolysis because my retic is way low. They checked me for Antiphospolipid Syndrome also but since I am taking Warfarin, it may not be a reliable result. SLE is close (low hemo, blood clots, and joints px but I do not have the itching and skin rash, no night sweats. I only feel ill when my hemo goes down below 8.5 or lower. I asked my doctors if I have MDS but not enough signs and symptoms although I was not tested for it. I believed that the Parvo virus started all these but having been infected for a long time cause my bone marrow to malfunction.

[triumphe64]

Parvo can be a definite cause of PRCA. Dr. Neal Young at the NIH has done work on that.
Do you have any autoimmune conditions?
FYI - PRCA is very rare.

[gina66]

I have some signs and symptoms of Autoimmune disease, the closest is SLE and/or Vasculitis. I was checked for ANA but negative several mos ago. I have some bumps under my skin, it could be inflamed blood vessels, lipoma, or sarcoid but not cancer because I had PET scan last month. PRCA is rare especially if idiophatic. Mine is due to Parvo virus. As I can remember my readings, blood clotting is one way of protecting our body from virus infection. My INR is stable now through Warfarin use. My platelets now is back to normal level which is a good sign. My WBC always normal level. I have this illness for about a yr now and really, I have never been infected by flu virus at all eventhough I took immunosupressant meds. I feel improving really, just my hemo goes down every 2-3 wks after. Thank you for info. I am interested to see the doctor that you mentioned. I will change my health insurance to accomodate more doctor options. Where does he work?

[triumphe64]

Because of your Parvo, I'm going to mention three doctors. I go to two of them, and they are great. Your doctors seem to have a good handle on this, but my experience is that PRCA is so complicated, that it is a good idea to get a second or third opinion. Even the autoimmune kind is slowly being believed to be part of another illness.

Locally in Dallas, I go to Dr. Cynthia Rutherford at UT Southwestern. She is very experienced in these anemias. I am her only current PRCA patient, but she has had others in the past. I know from conversations I have had with her that she has a special interest in the parvo aspect.

I also go twice a year to Dr. Jaroslaw P. Maciejewski at the Cleveland Clinic. He is mostly a researcher, and only schedules patients on Wednesdays. He has a special interest in PRCA and has had 26 patients the last time I asked him. Here is some detailed information on him. He is also a really nice guy, and will take a personal interest in you. He recently received a $1.9 million grant to study all of the bone marrow diseases to see if they are caused by specific viruses. There are thousands of possible viruses.
http://my.clevelandclinic.org/staff_...?DoctorID=4362

Neal Young, M.D.
National Institutes of Health
is the one I mentioned. Here is some some recent info on him.
http://servicetoamericamedals.org/SA...12_young.shtml
He is difficult to see, but it may be possible to see others at NIH.

I can expand on all of what I have given you if you want. I will also give you my name either as a PM message on this site or by email if you need some sort of referral reference.

[triumphe64]

Here is one of the articles by Dr. Young.

http://www2.medicine.wisc.edu/home/f...Parvovirus.pdf

[gina66]

Triumphe64, Thank you for all the info. I will check them up.