And the answer is:
Things that can lower your platelet count include:
quinine, which is found in tonic water.
That's why I always have a nice cold beer or two after a sweaty day volunteering with Habitat for Humanity. LOL. Doctors will tell you no alcohol. I say live and enjoy your life.
Have you noticed any differences when taking them or missing a dose?
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’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 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.
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 tried it for 2 months and it was horrible for me, mainly due to the aquatic pruritus it caused me. It felt like fire ants for 20-30 minutes after most showers, even a luke warm shower. In addition, I had frequent flu-like symptoms and heavy fatigue. My blood responded very well to it, but I couldn’t tolerate the side effects. So far my best medicine has been heavy daily exercise to keep my HCT low and avoid phlebotomies.
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