Polycythemia Vera: Just been diagnosed

Hi Jules, good questions for @mumma and others living with PV like @kat101 @buckaroobanzai @mattymatilda @bohobruja @chadknudson @mikepv.

@julesc, are you finding that you are able to continue working and your regular activities or do you have to scale back?

I don't have an official diagnosis as of yet, but I feel like I need to scale back. I haven't yet, but I realize I'm probably going to need to slow down a little.

I’m awaiting my JAK2 V617F status and overwhelmed by so much information. I’ve had several episodes of left side abdominal pain over the years. It was long lasting and recently I was diagnosed with constipation in urgent care. My HCT was slightly elevated but the rest of my blood work was ok. My severe pain was relieved with laxative treatment but it still felt sore over the last 3months. Lots of gurgling and I self treated for trapped gas etc as I thought I was dealing with digestive issue. I also laid off milk and added fiber. That pain is much better but I saw my Doctor this week and my HGB (16.8) HCT (49.2) RBC (5.49) WBC 4.5 BUN 21mg. He ask me to return for some additional bloodwork which included Erythropoietin ( 2018 was 3.4) and I just received 2/2023 results of (4.7) & I’m waiting for JAK V617F. I had no idea what it was until I goggled it. I’m so afraid. In past blood work slightly evaluated readings I was told in dehydration. And retested several months in a row and I would get normal but on the high end readings. Was my abdomen pain a swollen spleen. Does anyone have any insight while I wait this all out. If my JAK is negative can I be relieved? If I took cold medicine (Sudafed ) the day before bloodwork would that effect my blood?

I’m awaiting my JAK2 V617F status and overwhelmed by so much information. I’ve had several episodes of left side abdominal pain over the years. It was long lasting and recently I was diagnosed with constipation in urgent care. My HCT was slightly elevated but the rest of my blood work was ok. My severe pain was relieved with laxative treatment but it still felt sore over the last 3months. Lots of gurgling and I self treated for trapped gas etc as I thought I was dealing with digestive issue. I also laid off milk and added fiber. That pain is much better but I saw my Doctor this week and my HGB (16.8) HCT (49.2) RBC (5.49) WBC 4.5 BUN 21mg. He ask me to return for some additional bloodwork which included Erythropoietin ( 2018 was 3.4) and I just received 2/2023 results of (4.7) & I’m waiting for JAK V617F. I had no idea what it was until I goggled it. I’m so afraid. In past blood work slightly evaluated readings I was told in dehydration. And retested several months in a row and I would get normal but on the high end readings. Was my abdomen pain a swollen spleen. Does anyone have any insight while I wait this all out. If my JAK is negative can I be relieved? If I took cold medicine (Sudafed ) the day before bloodwork would that effect my blood?

Hi Jules, good questions for @mumma and others living with PV like @kat101 @buckaroobanzai @mattymatilda @bohobruja @chadknudson @mikepv.

@julesc, are you finding that you are able to continue working and your regular activities or do you have to scale back?

Hello Jules, I was diagnosed with PV this past September. I am a high school science teacher and was also concerned about having to cut back on working. Since phlebotomies once a week for 10 weeks and taking Hydrea, my blood work is within normal standards and my energy levels are up. I have only one more year til retirement so I plan to hang in there. That being said, I do have a lot of sick days saved, so I will also take advantage of them when needed and treated myself. Be strong!

Hi,

A friend has been diagnosed with polycythaemia vera very recently and is in a bit of a shock about it. They want to know why they're feeling dizzy when they look up?

They aren't starting treatment for a few weeks.

I want to be as helpful and knowledgeable as possible to support them. Any advice is appreciated!

I've had PV for three years and do phlebotomies generally about once a month. In discussion with my oncologist/hematologist we talked about what I might do to slow the production of blood down. One of the areas we talked about was the potential influence of one's diet. My doctor said that I should maintain my overall health to the best of my abilities and we also talked about the possibility of a reduced iron intake, since that is one of the fundamental building blocks of blood. I needed to drop some weight so I started a diet that put me into nutritional ketosis. That worked wonders for shedding pounds but one thing that I noticed was that the duration between my phlebotomies increased -- I was getting a phlebotomy once every three months instead of once per month while I was in nutritional ketosis. There hasn't been any studies on this to my knowledge, but it was a connection that I made based on my own personal experience. Your mileage may very. I would encourage you to talk to your doctor and explore what options are available to you. I didn't feel very well when my hematocrit got too high -- my doctor has set the threshold at 45% for me (greater than 45% = time to get a phlebotomy). Maintaining at 45% has kept me feeling pretty good and I'm still able to be very active (I work as a soccer referee).