I have PV and am JAK2 positive. I was diagnosed two years ago and have been taking 1500mg Hydrea/per day for almost a year. It has been keeping by blood work and symptoms under control. I am under 60 and have concerns about staying on Hydrea long term. I just had a telemedicine appointment with a doctor at Johns Hopkins who also expressed concern about the long term use of this medication, particularly for me since I am also BRAC2 positive. We discussed two other options such as Jakafi or… read more

I'm curious about people's use of various meds for PV, when they've transitioned to a different medication, and what they transitioned to. I'm currently on 1000 mg of Hydroxyurea and phlebotomies, am very iron deficient, and miserable (fatigue, nausea, headaches, itching, and night sweats).

It tends to last for about 15 hours

I have PV, having fortnightly phlebotomy's and are taking 1000mg hydroxyurea daily. I have been taking HU for 3 weeks now, but my hematocrit levels are still at 61%. How long would you expect it to take to start decreasing your levels? I guess it is a bit of an open ended question, but what have others experienced out there, to give me an idea. Much appreciated.

I started noticing issues with brain fog about 2 years before my MPN diagnosis. Went to a neurologist for a full work up. They said it was stress. Now I know differently since I got the MPN diagnosis last year. Multitasking is impossible. I've flooded rooms in my house TWICE forgetting to turn off the faucet. Today I had to hang up my car keys because I got out of my car without putting it in Park. Thank God it was in my driveway and I could jump in and break. So I don't trust myself behind the… read more

The drs tell me pv is super rare but that IM rare because I am only 32. I started having a ton of symptoms during the covid shut down..broke out in shingles for the first time, insane pain in my neck, upper back, ankles and knees, migraines every other day, brain fog, extreme fatigue and serious memory issues. So that was 2020 and I JUST FINALLY got a diagnosis this year! Its been a really hard few years getting through countless tests, phlebotomies and finally a bone marrow biopsy trying to get… read more

I was diagnosed just over a year ago with MPN, but I know I was quite ill with it for years before diagnosis. I see posts that include peoples' sub-diagnosis of this disease, but so far I don't have one. I'm battling rectal cancer at the same time, so the focus seems to be on that. My MPN diagnosis was precipitated by a stroke. My symptoms, thankfully, seem to be limited mostly to very, very, very severe itching. This itching cannot be predicted; it just comes on, and sometimes is so severe I'm… read more

Hey lovely people, hope you’re all doing great
I want to know when did you start to take drugs to lower platelets counts? How long after diagnosis and at which platelt count? What drug did u take
Also state if you have any condition other than MPN that increase your risk.
I am on anagralide and aspirin as my platelets are over 900 but i want to ask my doctor to stop the anagrelide and only stay on aspirin.
Want to know your experience.
I am 51 wit ET (CALR+) and i also have high cholesterol… read more