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Real members of myMPNteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
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I Googled (What Drinks Lower Blood Platelets ?)

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.

posted August 4
A myMPNteam Member

alcohol with the cranberry juice too maybe???

posted September 27

Which Supplements Or Vitamins Do You Take, And Why?

Which Supplements Or Vitamins Do You Take, And Why?

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

posted August 22
A myMPNteam Member

Somehow all my emails got dumped into spam. I am having a difficult time getting all of them back and un-spammed.I haven't been on in a while because I seem to not be getting any posts from this… read more

posted October 6

Covid Booster Dose For ET Patients?

Covid Booster Dose For ET Patients?

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

posted September 10, 2021
A myMPNteam Member

Thank you for this, Marje!

posted September 11, 2021

How Long Does Hydroxyurea Take To Reduce Blood Counts

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.

posted August 29, 2021
A myMPNteam Member

Thanks Rhonda!

posted November 25

Brain Fog

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

posted August 22, 2021
A myMPNteam Member

Hi Lorraine, after reading one of your previous posts, I asked my PCP to prescribe ritalin, she wanted me to check with the neurologist, who didn't want to prescribe it, wanted me on modafinil… read more

posted November 27

Ocular Migraines

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

posted June 6, 2021
A myMPNteam Member

I started getting ocular migraines in 2017. I went to the eye doctor and two neurologists. No one thought of testing my blood but did all kinds of other tests. I was diagnosed with PV in 2020 and my… read more

posted November 8

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

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.

posted April 3, 2021
A myMPNteam Member

Ive been on hydrea for about 21 years out ofthe 27 years that i have been treated.When i was 29 it was discovered that my platelets were high over 600.The oncologist told me to comeback when my counts… read more

posted November 15

Does Anyone Have Ringing In Their Ears Intermittently With PV?

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?

posted January 15, 2021
A myMPNteam Member

That's interesting!

posted November 5

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

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.

posted November 14
A myMPNteam Member

So sorry to hear Jan. Yeah Besremi is rough :( No easy answers with our disease.

posted November 20
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