Polycythemia Vera: Just been diagnosed

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.

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?

Chemo tabs? I didn’t know anything like that existed? Are you able to work and do your regular things or have you had to scale back?

Yes I was the same and scared I am two years in now
My playlets were high as with my blood count the team at chemo hospital gave me venesection to reticent blood count plus put me on chemo tabs I have got my head round it now and am living with it

Have you learned anything new? I’m at early investigative stage and scared. My red blood cells are high as is my B-12.

I have seen my family doctor who sent me for more bloodwork. I seen a specialist who didn’t have my test results yet. I called him again on Friday, cannot get an appointment til Dec 21. My family doctor thinks it’s Polycythemia Vera because of my high red blood cell count and numbness in my legs. I’ve had one phlebotomy so far.

My Polycythemia Vera and JAK2 positive test and diagnosis was on Nov. 25, 2022. After starting 1000 mg Hydroxyurea daily, 4 Phlebotomies and weekly CBC labs I was advised to return in late February for a CBC review. HCT history went from 66.3 to 37.6 as of Jan 26, 2023. HBC dropped from 21.6 to 12.6 over this period. I am 70year old female. Currently I am following my blood glucose levels (over the years successfully controlled by diet) it has shot up from 90 to 150 I am wondering if this is something that is to be expected.

I’m no Dr. but I believe the HU is prescribed first.. I was almost 67 when I was diagnosed in spring of 2021… I had 4 phlebotomies(1 per week for a month), was put on aspirin, and HU… My oncologist’s main focus was lowering the HCT which was very high… I should say that I never even heard of PV before I was diagnosed… In my case, I have tolerated the HU very well.. I currently am taking 7500 mg per week.. I am also very active.. I bike every day as long as the weather allows for it and also do a lot of walking… Long sleeves and sunscreen are a must on sunny days… Honestly, despite taking HU, I feel really good.. no symptoms, high energy, no issues.. I also understand that some people cannot tolerate HU at all… It effects people differently… Hope this helps and best of luck to you and your husband..

Hello everyone! I was diagnosed 3 months ago with pv and secondary eryth(not sure how to spell it). I have been doing phlebotomy once a month for 3 months. Started with 300 CC and now at 500 CC since my numbers are still climbing. I tested negative for Jak2. I am so confused as to what to ask my doctor or how to move forward. I have not had bone marrow biopsy, but I have all the symptoms of PV. My big toe kills me on both feet. My skin is flushed on my face and arms. I am so fatigued and keep a headache. I have shortness of breath. I am seeing lung doctor and heart doctor this month. My journey started with a tumor on my spinal cord in Feb that could not be completely removed. My back pain has not improved and my doctor checked my CBC for 3 months before referring to oncologist. No one tells you anything really - and I feel a little lost. Any advice on the Jak2 neg and my numbers not responding with phlebotomies? Also what is normal on the phlebotomy? Sorry this is so long...what questions should I ask my doctor? Help....