Jak 2 Positive with Elevated Platelets: What symptoms do you have?

Have you been diagnosed with PV? Your platelets are just slightly high and not dangerous. I do have joint/muscle pain. Bloating can be an issue for an enlarged spleen which is common with PV but not dangerous or life threatening. I was diagnosed with Polycythemia Vera in January. I’m a 56 yr old female with no other health issues. My platelets were 777 and I’m JAK2 positive. I didn’t need the bone marrow test to confirm b/c all my labs did that. Good luck and hang in there!

I am JAK2 positive with ET and my platelets are still in the millions. I started taking Hydroxyurea 2x a day. I do have muscle and joint pain, but it may be arthritis at my age.

It is the worst in the morning - mostly in my hip joints and leg muscles.

I've not experienced bloat and indigestion.

This may make you feel a little better. I was diagnosed with ET in 2011. Platelets have always hovered 950-1200. No symptoms of any kind. Had a bone marrow biopsy done early last year. Mine is CAL-R mutation. Also, my marrow fibrosis is MF1, which makes me feel pretty good since I’ve had ET for so long. Only thing that bothers me is I was diagnosed with LC MGUS of 8-9% when I had the biopsy. My LC ration is very low, but still think about it all the time.

I’m JAK 2 positive, platelets in 700s. Started hydroxyurea 1000mg/day 2 weeks ago. Am experiencing unusually elevated fatigue since starting it. Is a this common reaction? I’ve left a message for my oncologist - haven’t heard anything!

Re Hydroxyurea. I have been on 500mg and 1,000mg per day for almost 1 year. Fatigue and ongoing headaches seem to be constant but I think this drug (in my opinion) is better than an alternatives offered so far

Welcome ortho3,

Have you had a bone marrow biopsy? Are you diagnosed with ET or PV?

I my opinion 1,000 mg daily is a pretty heavy starting dose of Hydroxyurea (HU). Can you ask your doctor about possibly going down to starting dose of 500 mg?

My side effect at 500 mg daily have been headaches.

Eileen

I have PV and began hydroxyurea with 500mg daily. Lowered platelets pretty quickly, went to 5X a week. With phlebotomies, it was dripping rather quickly, so just recently went to 3X a week. I hope that I can stay at this dose. I get the headaches but I believe it’s my PV not the meds. I did notice small brown spots, like sun spots when taking it daily and my gums were very sensitive but it lessened as time passed. I hope you get the right dosage soon! I’m four month in since diagnosis and we are still figuring it out.

Welcome to the club. Almost 71 yo woman w/ET a few months now. Platelets are in the 500's and JAK2 positive, also on a baby aspirin. My primary recommended I try taking colostrum for bloating. There are many brands out there - I'm normally lactose intolerant, but I found one that doesn't have casein. So far, so good. Maybe that can help you?

yes, the first year I was more tired than usual, but it was also the first year of the pandemic, which also took it's toll on me. I had some other side effects (gut), but not too bad. This is my 3rd year on 1,000 HU. I get a blood test every 6-12 weeks depending on most recent results and side effects are minimal now

Waiting for approval for biopsy. Diagnosed with ET by bloodwork. My message to the oncologist was about lowering the dose - still waiting!!