Questions & Answers

I Googled (What Drinks Lower Blood Platelets ?)

And the answer is:
Things that can lower your platelet count include:

quinine, which is found in tonic water.
alcohol.
cranberry juice.
cow's milk.
tahini.
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.

What's One Piece Of Advice You'd Give To Someone Who Was Recently Diagnosed?

Which Supplements Or Vitamins Do You Take, And Why?

Have you noticed any differences when taking them or missing a dose?

Covid Booster Dose For ET Patients?

Is a third mRNA recommended for ET patients on Hydrea and ASA in the US? Canada? Europe?

How Long Does Hydroxyurea Take To Reduce Blood Counts

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.

Brain Fog

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

Ocular Migraines

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

Have Any Of You ET'ers Ever Stopped Hydrea (under Drs Supervision) Just To See What Would Happen? What Did?

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.

Does Anyone Have Ringing In Their Ears Intermittently With PV?

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?

Just Curious If Anyone Else Has Tried Besremi (ropeg Interferon)?

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.