@roughanne Hello. I was diagnosed with JAK2/PV almost 6 years ago. I’m 78 soon.
Started on Hydroxyurea (HU) 500mg daily and began seeing hematologist but wasn’t happy with dr. So, I found a wonderful Dr. in Mayo system. She immediately increased HU to 1000 mg daily and began phlebotomies. I was going in for bloodwork every month but now it’s every three months unless I begin to feel unwell. I feel it when my hematocrit reaches 42 (my legs/calfs) and within a day of phlebotomy I feel better.
Because I’m old (it is what it is) and have other issues it’s hard for me to be able to completely differentiate between PV symptoms and my old self.
I can say that at the beginning of this I did experience exhaustion I had never felt. It’s usually better now and I’ve learned to rest more. But, luckily, no headaches or bone pain, or mouth sores and very little itching (and I love a hot shower).
When first diagnosed I scared myself when I googled PV because my GP who sent me for JAK2 Test did not tell me it was cancer and only told me to get to a hematologist.
Please ask your questions because there are a lot of very nice people here, of all ages, and with varying experiences and all helpful
And, if you haven’t already, find a good hematologist who you trust and believe in.