Polycythemia Vera: Just been diagnosed

Hi Lori, Besremi did the trick on HCT and more than halved my Platelets in 6 injections; however, my liver enzymes were elevated and the doctor took me off it. (The side effects were not happy, but I would have forged on if not for the liver.) Now after more than a month off Besremi, my platelets are rising again. The clinic and Medicare, to boot, have not been able to agree on paying for Besremi, which has reached about $120,000 in cost. The clinic wanted to inject me until my dose stabilized; Medicare says patients MUST self inject. I am of course lost in the middle of this, with no written assurances that I am not "broke". My local hema/onc doc just says: people your age (65) usually just take chemo (HU), but I do not want it. I will talk to the Mayo doc I saw on zoom in December, to see what else I might do as the blood counts begin to go haywire again. I've tried some Chinese herbs for liver detox; taking some milk thistle seed tea occasionally too. Daily aspirin 'natch.
I've ordered a SUP board for summer "coping skills" and a sun protective shirt. I'll either drown or have fun, I figure. (Don't worry, I'll wear a life vest!)

About sleep apnea, I (who have PV) did the full fledged test in the clinic overnight, as they said the at-home was less reliable. The diagnosis was NO sleep apnea, though I snore and experience hours of insomnia quite a lot. I also do not have restless leg syndrome, my oxygen level was fine, I only paused between breaths one time an hour. So no explanation for hematocrit levels or insomnia. CO2 was normal as well. (I'll tell ya: It was really hard to sleep in that unfriendly, alien setting with fluorescent light creeping under the door and strapped up in cords.) Anyhow, I guess I had to be tested, just in case. PeggySue, I also have woken gasping --and shaking, but only twice, when I was face down in a pillow. This was really odd and spooky for me, and unexplained by clinic test personnel. I know my blood counts were much worse when it happened, and I was stressed by having to go on meds, and by the whole MPN circus of worries. By the way, I was on Besremi for a few months, and it brought the counts way down, but also brought on malaise, etc. Then Medicare and the clinic began dueling about the expense, so I said I'm off that stuff until they can tell me the cost to me. Also, my liver enzymes soared , so the doctor said he'd back off meds for a while. He is old fashioned, tho a youngish man, and said, basically, that people my age (65) are usually on HU, but he understood (hmmm...) about me hoping for some molecular remission on Besremi. Best of luck to us all!

Thank you for your encouragement! It is very scary being diagnosed with something so rare and then watching your blood tests go up and down for months. Still trying to get my HU dosage right but I try to stay positive and grateful that the meds do do their job. I’m a 56 yr old female was has never had any health issues or even any daily meds until now so this was a shocker!

Hello, have just read read posts about sleep apnea. I have had PV with JAK2 for six years. phlebotomies, Hydrea, now Jakafi have managed it and life is enjoyable. I am scheduled for sleep test May 28 and am very curious to see how sleep disorders may affect this condition. I have read many reports that it does have a effect. Anyone new to PV/ JAK2 keep positive it takes time to adjust meds and outlook but it can be very manageble.

If you wake up gasping, that can a sign of sleep apnea. An Overnight oximetry test is super easy and very inexpensive for a doctor to order. It might be worth talking to your doctor about the possibility. I had no idea the connection with SA sleep apnea and the possible rise in hemoglobin and hematocrit. I do hope you find the cause soon so that you can start feeling healthy again. Let me know what you find out, ok?

Hi Lori,

I dont know. I don't snore except very rarely (usually after weeks of insomnia and I finally pass out hard) I do find myself kind of gasping awake sometimes the last several months though. I really don't know what to think. I haven't felt good in years, but everything seems to have really escalated since April 2022 with that unprovoked clot 🙁

Several months ago, my hematocrit and hemoglobin numbers were continuing to rise after recovery from a bone marrow transplant. We wanted to see numbers go up but not to keep climbing. Since my husband is my ‘caregiver’ and still tags along to my appts, I was a bit chagrined when my hematologist asked my husband if I snored! LOL.
Embarrassment ensued as I really felt certain that the answer would be no! Hah, well…anyway…the reason he wanted to know was to see if I had sleep apnea. That can cause the change in the EPO number you were talking about. (I had a sleep apnea test and do not have that) But I did add more vigorous aerobic workouts to my day to increase the EPO and my numbers have stabilized.

Erythropoietin (EPO) is a hormone that your kidneys naturally make to stimulate the production of red blood cells. When a person has sleep apnea, the amount of oxygen in the body diminishes and that triggers the kidneys to call for the production of more red blood cells if the erythropoietin level is too low.

Here’s a link to that information:
https://my.clevelandclinic.org/health/articles/14573-erythropoietin
Your doctor may ask you the same question…do you possibly have sleep apnea?

Hopefully good news! Could be just Polycythemia, not PV. If so they’ll do tests to see what’s causing it and you can be treated. Hoping it’ll be something g simple and they can treat you and you’re done. Polycythemia Vera is a lifelong disease but just Polycythemia is not 😊 Good luck!

Just following up. My Jak2 was negative and my EPO was 5. I don't know what that means as far as a PV diagnosis, but, I see my hematologist on Wednesday and I'll be sure to check back in to let you all know. I hope everyone is doing well! (:

Black seed oil thins your blood too.