Polycythemia Support Group

Polycythemia is a condition in which there is a net increase in the total circulating erythrocyte (red blood cell) mass of the body. There are several types of polycythemia. Primary polycythemia, often called polycythemia vera (PCV), polycythemia rubra vera (PRV), erythremia, or just PV, occurs when excess erythrocytes are produced as a result of a proliferative...

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Heart, Blood & Circulation
/ Polycythemia Support Group

Questions about dx

deleted_user
deleted_user
Hi, I'm a 40 year old female with Lupus and aps. Recently my rheumatologist has been talking to be about polycythemia. My RBC, HCT, and HGB are all high. This is not new for me they have been high for at least 20 years. Lasted labs shows
RBC 5.45
HCT 48.4 been as high as 50.1
HGB 15.9 been as high as 16.4
These are all pretty much what they run on a regular basis. Back in 1997 I had red blood cell mass test that showed borderline elevated red blood cell mass and borderline low plasma volume. Nothing further was done I have since left that medical facility.
I questioned her today whether or not I should be seen by a hematologist.
I'm currently on a slew of meds for my lupus high blood pressure and aspirin for aps. However I'm still suffering from joint pain fatigue drenching night sweats dizziness headaches my face is as red as a beat all the time. The past 3 years I have had breakouts of petechia with no real explanations as to why. She seemed a bit put off that I questioned her and said they may ask me why I'm there. I'm curious what's the deal as this has been an issue for me seems like forever. She gave me the referral and I see them next Tuesday. She keeps saying polycythemia but not doing anything. Maybe my normal just with all my symptoms I feel there's more going on. Can anyone shed some light and experience with there polycythemia and dx. Did it take 20 freaking years?
birkita
birkita
Are they talking about Polycythemia Vera (PV) or Polycythemia with no obvious cause? Have you had a bone marrow biopsy or a genetic test for PV?

Sorry for the questions but I am trying to establish a basic history to help you better. I have Polycythemia with no specific cause and often have HCT over 50 and HGB at 18. My blood can be so thick they struggle to take samples. Yes I also have the pains etc but I have Hemochromatosis as well so its a double down situation.
deleted_user
deleted_user
Thanks for the reply. Nope the only tests ever done for this have been the red cell mass and epo levels back in 1998. My epo level then was 3.3 I'm having trouble finding anything on this really don't know what this result means. No bone marrow or genetic testing. Dr said polycythemia only. I asked about pv and she thought it would have transformed by now. I have had issues with regular blood draws where they have to change veins because it just stops. Never thought much about it until the last year or so after getting the dx of aps antiphospholipd syndrome aka sticky blood. With the petechia popping up that's another issue with clotting. Have had a mri which showed an old minor stroke probably happened when I was gp as I had serious pre eclampsia most likely from the lupus that they didn't know I had.
deleted_user
deleted_user
Update appt with hematologist today he suspects pv. Had the bone marrow biopsy surprise go back next Tuesday for results.
birkita
birkita
They planned my biopsy a month in advance and I had to use the hospital outpatient facility for the procedure. It sounds like you were flipped over and jabbed by your doctor in his office. I hope it went painlessly.

If you are lucky, and I mean that relatively to other outcomes, the doctor will confirm PV.
deleted_user
deleted_user
Yes to my surprise I was flipped over and jabbed in his office. No warning. I asked if I could come back with my husband to hold my hand although now that's it's over I'm not so sure he would have done so well he said well lest just save you a trip. I won't lie it hurt. My upper chest and arms were so sore the next day from holding on/squeezing the table lol. I was sent to the lab after for a blood draw and after sitting to wait I began to shiver uncontrollably. Fear over took me for moment. I have three more days to wait. Tuesday can not come soon enough. I'm sick to my stomachs with nerves. I need zanex or something. He asked me if I goggled and wrote myeloproliferative disorder and handed it to me. Confirmed that my epo levels were below normal in 1998 at 3. New test reveled epo at 7.
Still low but now low normal. That's all I know. My husband is being a jerk he's just as freaked out. It's just an overwhelming time for the both of us. If it's true Pv I know its treatable BUT my life will never be the same. I was with my older sister every step of the way never missed a treatment or dr appt with her durning her breast cancer. Never though I'd be having to visit the oncology unit.
deleted_user
deleted_user
Bone marrow results looked good. Whew. Now waiting for jak2 to come back two weeks.
birkita
birkita
I have Hemochromatosis and Polycythemia and am a regular 'inmate' at the oncology infusion center. I count myself lucky that I can walk in and out unaided and have a reasonable prognosis, all be it chronic. Seeing the cancer patients makes you realise how much worse it can be.
hanilatif
hanilatif
I too am wondering if I might have Polycythemia vera?

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