Diagnosed just in May 2020 with PV. All my counts, Hematcrit, WBC's & Platelets are in good range. Recently developed intermittently ringing in my ears. Anyone else have this & is there any treatment for it you've found?
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’m new to the site and just received positive JAK2 mutation results - discovered via a high platelet count at my regular annual physical. I’m in my mid-60s, in excellent health other than high platelet levels (800s), and all other blood levels and markers are normal and I had no symptoms. My hematologist suspects ET, but I will meet with him next week for confirmation & a full consultation and review of treatment options. The only other remarkable issue I’ve had over the past few years are… read more
I have ET, Cal Axion 9 Mutation (Calr). I have been on HU for over a year, my platelets have reached 1.5 million. (They have been at 1 million for over a year.) I am wondering about side effects. Thanks in advance!
I saw a MPN specialist who suggested that I try this. I'd be curious to see if others have done it and what the outcome was.
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
Jakafi has increased my cholesterol levels off the charts and now my GP thinks I should be on statins. She recommended Crestor as an option and since I have never had this problem before, I gave it a try. I had a severe cytokinesis reaction and am now off of it. Does any one here take statins, and if so which ones? Have you had reactions to them to the point that you ended up in the hospital?
I've been on hydrea 500mg for about 6 months, platelets were over 900 and after going up and down the seemed to settle around 560, today they are 707, have to go back in 3 weeks to check again. Does anyone else look at all the numbers they tell you not to be concerned about, and are concerned anyway? This is such a rollercoaster.
The pain is an aching and sometimes throbbing pain. I went to ER once and they did MEI to make sure there’s no blood clots but doesn’t know exactly what causes it,
I have recently become suck. I have been to the ER and they did some test. I found out quite a few things I did not know. But anyways is there anyone out there that has problems with your mouth. Lately I have like strip of small white dots in my cheeks. My gums have become sore and I brush and use proxide to try to get it under control. The last few days I have have a sore throat
Yes I just had a Covid 19 and it came back n egative so was wondering if It's another things going on
My CT scan… read more
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