Not diagnosed yet

[Fallorange]

I'm 61 years old, female.

I recently went for a routine PE and when my labs came back, the doctor said "we need to watch your WBC". I was surprised and decided to do my research after looking at the details of the lab report.

I almost wish I hadn't, because it wasn't just my WBC that was high, it was the RBC, the hemocrit (46.7%) and hemoglobin (15.9).

Also, I have always had varicose veins, and my ankles are swollen and show capillaries.

My ESR and CRP are extremely high, and have always been high all my life.

The doctor thinks the inflammation is because of my arthritis.

The more I read, the more I find that my blood lab results mimic a classic case of PV, albeit an early one. I have no symptoms except for warm feet that are always heavy and achy. Something that I have had which no doctor has ever tried to investigate.

Now I know why I always had unsightly from varicose veins and ankles. My blood was too viscous for my veins to handle.

I am shocked. My husband thinks I am crazy for diagnosing myself.

I hope to God I am wrong, and this is just a nightmare.

I am exhausted with worry, but the bravery and positivity I came across this forum is heart warming and gives me hope.

I plan to go see a hematologist (Im not waiting).

Thank you for reading.

[hunter5582]

There are a number of possibilities to explain the erythrocytosis and leukocytosis. PV is one of them but not the only possibility. Note that elevation in inflammatory cytokines is also a hallmark of PV. Some of the other issues you describe are consistent as well.

You are wise not to wait to get a proper diagnosis. MPNs are rare disorders. Most doctors know very little about them. Most hematologists have very little experience with MPNs as well. It is important to consult with a MPN Specialist. It is one of the most important things you can do in the event that you are diagnosed with a MPN. Here are two lists.

mpnforum.com/list-hem./

pvreporter.com/mpn-speciali...

While what you are describing is consistent with PV, that is not definitive. A proper diagnosis will require additional testing. This will minimally include another CBC, CMP, prothrombin times, iron panel, EPO, and other additional blood work. One of the most important tests is to check for the presence of the JAK2 mutation that is present in about 98% of PV cases. The newer NGS MPN panel tests are more sensitive. You may also be recommended for a bone marrow biopsy. It will take some time to find a knowledgeable hematologist, get an appointment, and get the results back. In the waiting period, try not to fret too much about the diagnosis. Most of us with PV can expect to live a relatively normal lifespan due to the advances in treatment in recent years.

I was diagnosed with ET over 30 years ago. It progressed to PV about 10 years ago. I have lived a good life and at age 68 continue to do so. In fact, I feel better now than I did 10 years ago due to my current treatment plan. Suggest you plan to do the same.

Wishing you all the best.

[Fallorange in reply to hunter5582]

Thank you so much for this information and encourgament Hunter!

Really appreciate it.

Also just reading your profile information about past treatments was an education in on itself, and inspiring as well.

I will try to not fret so much until I find out what is going on with me.

[KLCTJC]

Polycythemia can also be secondary. I have PV but I am a PA and I see secondary all the time with my patients. Smoking, sleep apnea, inflammation, etc can cause it and it not be a MPN like we on this site have. This has been a big question I have asked my local hematologist which we work closely together because we share patients about how they handle secondary. Despite secondary not being a “cancer” they are still at risk for clots which is our biggest risk. So, they will still need to treat and monitor them just a little different than if it was a MPN. Definitely needs to be investigated. Hunter always has the best advice. Good luck.

[Fallorange in reply to KLCTJC]

Thank you for giving me hope KLCTJC. I did not know inflammation can cause secondary PV, I thought it was the other way round. I am so hoping it is secondary to something. And your point about the risk of clots is well taken.

[MAP44]

Sending you hugs and positive thoughts!

We are a very supportive group if you have any questions. I was diagnosed in 2020 with COVID all around, certainly a confusing time. A few years later and I feel great, adjusted my lifestyle a bit, on medication and aspirin and am doing fabulously. Knowledge is power.

Good luck, keep us posted. 🌼🌸🌺

[Fallorange]

Thank you MAP44! What meds are you on?

[MAP44]

Hi again,

I take a shot 1/ week of 90 mcg of pegasys an interferon 2A that was originally used to treat hepatitis many years ago. It

caused crazy side effects in those individuals blood counts. Luckily I already had a crazy CBC ( complete blood count) so the effects of using the pegasys off label to treat PV is what brought all my blood back to the normal ranges again. It took months to start feeling better and for my body to adjust but it certainly has returned to normal. 🍻

[Fallorange]

Thanks MAP44.