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
I have ET and I’ve been on hydroxurea (1000 mg per day) since Mid-June of 2021 and just got my first monthly blood analysis results. My platelets have dropped from over 850+ down to 451 (still above normal, but a dramatic drop for me!) Everything else looks good except now my RDW (red cell distribution width) number is high - I jumped from 13 to 15.4! It appears that this may be a side effect of hydroxyurea, and I may need to increase my vitamin B-12 intake to see if it helps to reduce it …or… read more
I have ET, JAK2+. Dx 7 yrs ago but itching just started a couple months ago. It is unbearable after even a cold shower. I use lotion twice daily, no help. I know it has to do with mast cells & cytokines (puritus on a cellular level) with having a MPN. What do you do or take to relieve it?
Is a baseline bone marrow biopsy standard in the diagnosing of a MPN or for monitoring it?
My husband was diagnosed last Aug 2020 and we have seen his Oncologist once. Covid has thrown a wrench in this but when I asked him how often we should expect office visits he said he typically sees his PV patients once a year. I'm very uncomfortable with that.
Said that the blood work/labs show him what he needs.
I was diagnosed with PMF at 45 which is my the median age for this disease.
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