How bad is a diagnosis of Polycythemia Vera?

It is not a “bad diagnosis” as such. Fatigue is a regular side effect, but despite having PV myself I am not in a position to comment or advise. My only suggestion would be is to check further with a specialist/haematologist about his reaction to his meds; (i.e a 2nd opinion might be called for to put both your minds at rest…)

I’m 75 and was diagnosed with PCV 2 years ago. I used to get phlebotomy’s every month but now I take hydros 3 times a week. When fatigue sets in, I get up and do some sort of exercise. It’s not bad for me but I guess some people have more side effects than others. I won’t let the old woman in.

It takes a while to get the hydro dose adjusted. I started on 2 per day in the beginning to get numbers down. I was very tired at first but that gradually decreased. I’m now on 5 per week after 1 yr. Still have tired days but just push through it. No other side effects.

Hi @onthejoedock Polycythemia vera is a type of cancer that causes red blood cells to multiply. Having too many can cause some serious complications if untreated, such as blood clots. Hydroxyurea is one of the medications used to get the overproduction of blood cells back in order. As others have mentioned, it can take a while to get the balance of HU just right for your husband.
His doctor may make adjustments such as reducing the dosage to one 500 ml per day or alternate how much he takes per week. The initial high dosage may be in response to the blood result number of your husband. It may be reduced as his numbers come down.
But if he is having such a negative reaction to the large dosage call his doctor’s office. They may have him take one pill per day and then work up to two.
As we get older our bodies don’t process drugs as quickly so it is possible to get too much in the system at one time. Again, it’s important to speak with your husband’s doctor right away. Don’t hesitate to call them…you’re not being a bother! They won’t know unless you tell them about your husband’s reaction.
Here are links a couple of good articles on PV so that you can learn a little more about it.
https://www.healthline.com/health/polycythemia-vera
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https://www.verywellhealth.com/polycythemia-vera-disorder-overview-2252550
Was your husband tested for a mutation such as JAK2?

I have P V for almost 2 years and probably longer but did not know until I had 3 blood clots in one leg
Started on a blood drop every week and 1000 hydroxyurea a day .The blood drops made my iron go very low and I figured that's why I was so tired.But things get better and I only had 2 blood drops this year and was down to 500 hydroxyurea 3 times a week.I understand his concern but it gets better in time.
All the best to you and your partner.

I have same story as many of these replies. First diagnosed in 2021 and started with daily HU and phlebotomy every two weeks. After a few months my numbers started to stabilize. Now doing monthly blood tests (CBC) and 4x weekly HU . Only had two phlebotomies this past year. I’m not really aware of any side effects from the HU. You might also ask your doctor if you need to have your spleen checked. It can become enlarged from processing the excess blood cells produced as a result of the PV.

Yes my husband had the JAK2 test after his platelets were in the 800's. And JAK2 TEST came back positive medium deterioration. Dr said he had jak2 ET. Dr started Hydrea 500 mg once a day. And set up a bone marrow biopsy. After months we got biopsy. Dr said Joe my husband, is polycythemia Vera because RBC are too high. RBC is getting too thick. So did a phlebotomy that day. Took 1 pint blood out and saline back in. And to do ever 2 weeks and take Hydrea twice a day. Then check bloodwork a day before next Phlebotomy. So my Joe instead of taking Hydrea twice a day to them all at once in the morning and relized that wasn't good it messed him up. So now takes one in morning and one in evening. But the evening makes him very tired and goofy. But it's getting a little better maybe. So waiting for next bloodwork to see how he is doing. Last bloodwork was platelets down to 673 and RBC were 52.7%. Thank you for your comments

Good morning, @onthejoedock. When there is a mutation with the JAK2 gene, it can interfere with the proper production of all the blood cells…white, red and platelets. Some people will have only one issue such as essential thrombocythemia (ET) with the overproduction of platelets or Polycythemia vera (PV) the over production of red cells, though there are more conditions associated with this.

I thought you might appreciate this article which explains the involvement of the JAK2 gene with your husband’s PV and ET.
https://www.verywellhealth.com/jak2-mutation-5217909?utm_campaign=687680030-1175379671227571&utm_source=bingpaid&utm_medium=paid&utm_content=73461429226290&utm_term=o-jak2%20mutation-jak2%20mutation&msclkid=daabcf8367f4199652dcaa4393a62de9
It’s encouraging to hear your husband is starting to adapt to the HU. It can take a while and like I mentioned before, the doctor may consider lowering Joe’s dosage when his blood numbers level out.
It’s also important to have a good liquid intake during the day. This helps with flushing out waste from the body, regulating body temperature, and helping the brain function. If Joe isn’t drinking enough that might explain some of the confusion and exhaustion at the end of the day…just a thought. I know when I was on quite a few meds
I could tell when I hadn’t had enough to drink. I learned through my nurses at Mayo to drink room temperature water. It goes down a lot easier so I drink more. I’m no longer on meds but I still find myself drinking at least 64 ounces daily.

Fingers crossed for Joe’s next blood work! I hope his numbers are back to normal. ☺️

Jakafi has been a game changer for me. Really helped with side effects of PV.

thank you this is very informative. Were you diagnosed with ET?