Secondary polycythemia: What are the treatment options?

Hi @ausableriver, Polycythemia Vera is a condition where the bone marrow makes too many red blood cells. There are two types of this condition…Primary PV, which is generally genetic. Secondary PV is the more common of the two and means that some other condition is causing your body to produce too many red blood cells. Once diagnosed, most doctors don’t refer to it as primary or secondary, you just have PV.

This article from Healthline.com does a really great job of explaining it better than I can…
https://www.healthline.com/health/secondary-polycythemia
Your doctor may do some further testing to find the underlying cause. Sometimes it can be something as simple as sleep apnea, where your body isn’t getting enough oxygen. That sends a signal to the body to produce more red blood cells. However, it may also be caused by an acquired mutated gene such as JAK2, which can cause this myeloproliferative disorder. If your doctor hasn’t already this would be a good test to have done to determine the cause of your PV.

Phlebotomies are most frequently the ‘go-to’ procedure to remove excess blood from the body, but if there is nothing to slow the production of cells then that will become an ongoing treatment. It’s not always the best option for everyone with PV. There are medications such as Hydroxyurea (HU) or ruxolitinib which can help control the over production of blood cells.

Another article that will shed some light on treatment options.
https://www.verywellhealth.com/treatment-options-for-polycythemia-vera-4058479
Have you had a followup discussion with your hematologist after your cancelled phlebotomy?

Hi Lori, long time no talk!

Wishing you a very happy & healthy 2024.

Wanted to give you an update, I DON'T have PV. I was misdiagnosed by 2 oncologist, finally a cardiologist I trust recommended a doc he works with and respects. It was Dr. Scola who finally listened to my concerns / hunch that perhaps I don't have PV (being Jak2 neg).

He immediately scheduled a bone biopsy after really LISTENING to me (gee, what a concept eh? 🤔).

That definitely showed I do not have PV. So 9 months later I'm back to square one of many tests, new docs etc. to try and determine what is causing the Polycythemia.

Moral's of the story:
* Always research; read read read, then read some more, knowledge is power.

* Be your own advocate and a strong one, write your questions down and ask every single one.

* Have someone with you at EVERY single visit, not if it's just a test, to go over results and discuss next steps type visits. Another set of eyes, ears and mouth to ask questions is very important.

*My best friend comes and she's so organized she types up a summary & my to-do's and emails me. She knows how overwhelmed I am and feeling crappy most of the time.

* Challenge the doc if you don't agree and absolutely get a 2nd, 3rd, 4th etc opinion until you find a doc you feel us listening. So many do not and far too many follow their "text books" where I feel that's very dangerous.

Many of us are not "normal", I mean that to be physically, mentally and spiritually "different".

These 3 factors play equal roles in our overall health, IMHO. You don't have to feel the same, I very much respect that.

My journey since getting diagnosed on Good Friday of 2023 has not been pleasant. Then to find out much of it could have been prevented if the 2nd oncologist had ordered a simple bone marrow biopsy. Not pleasant but you don't need anesthesia, the pain is a bit more severe when they suck the stuff out and its very quick. Not the drilling in part but it wasn't bad. I've had 3 kids naturally, I'd take the biopsy over that again any day. Why grandkids are truly a gift from God, plus all the fun and no stress when you deliver them back 😉 My grandson just got his license yesterday since he turned 17, now he can come see his Oma any time he wants day or night 🥰❤️

I'll be in touch, fairly extensive bloodwork has been done, no significant findings to explain excess HGB production. Next up sleep test, going round with insurance right now but has to be resolved, it's medically necessary.

Be well & stay warm!

Wow!!!! If I could still do backflips and cartwheels without doing serious bodily injury I’d be flipping all over with your good news! (Now I’ll settle for a happy dance 💃)

This really shows you have to be an advocate for yourself. And you, my friend are tenacious! I’m so glad that you kept pursuing this and finally got the right answer! I’m also happy you found a doctor who paid attention to what you were telling them!

I love that your friend is your ride or die through all these medical procedures and appointments. It really does help to have another set of eyes and ears at these meetings. My husband was my caregiver through all my chemo & SCT drama. What I didn’t hear, he’d catch or vice versa. So thank you for sharing how important this was for you to have someone accompany you with your appointments.

Best wishes going forward! And congrats on the grandson’s new license! I hope he spends lots of hours now with his Oma! That’s awesome! Thanks again for sharing your good news! I expect updates! 🙃 Hugs, Lori.