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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.
Does Anyone Have Ringing In Their Ears Intermittently With PV?
A myMPNteam Member asked a question 💭

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
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A myMPNteam Member

Yes, I have had and do have ringing in my ears; however, the ringing predates the diagnosis of PV. I try to ignore as much as possible.

posted April 9
Precautions While Using Hydroxyurea
A myMPNteam Member asked a question 💭

I've been wondering how cognizant we are of the absolutely necessary precautions related to its use. Hydroxyurea is poisonous, you know. These are some general directions from pharmacy flyers, and I've added some cautionary suggestions from my own experience, for whatever its worth.

Proper Use:

Wear disposable gloves when handling the bottle or medicine. (I really doubt that many do this. I also believe that the container shouldn't be stored with other medications.)

read more
posted May 2
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A myMPNteam Member

Oh my stars! What an oxymoron?!? Don’t touch it etc…but poison yourself daily? Im so sorry, guys. I take Jakafi daily which has its own issues but nothing like you guys are describing when hydroxide.😓… read more

posted May 23
Has Everyone Who's Been Diagnose With An MPN Had A Bone Marrow Biopsy Done?
A myMPNteam Member asked a question 💭

Is a baseline bone marrow biopsy standard in the diagnosing of a MPN or for monitoring it?

posted July 3, 2021
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A myMPNteam Member

Bone Marrow biopsy is the Only way to accurately diagnose PMF and the level. I am ET, but had some minimal scaring in marrow. Scarring can eventually lead to a complete inability of marrow to… read more

posted 4 days ago
I Googled (What Drinks Lower Blood Platelets ?)
A myMPNteam Member asked a question 💭

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

quinine, which is found in tonic water.
cranberry juice.
cow's milk.
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, 2022
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A myMPNteam Member

alcohol with the cranberry juice too maybe???

posted September 27, 2022
What's One Piece Of Advice You'd Give To Someone Who Was Recently Diagnosed?
A myMPNteam Member asked a question 💭
posted April 5, 2022
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A myMPNteam Member

You’ve come to the right place for information, support from people who are and have been going through the fear of being diagnosed with something that sounds like a death sentence. My advice to to… read more

posted February 22 (edited)
Ocular Migraines
A myMPNteam Member asked a question 💭

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
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A myMPNteam Member

Welcome to this site. I was diagnosed with ET 5 years ago and have been on a variety of Hydrea dosage. I have headaches and fatigue, but no ocular headaches.

posted April 21
How Do You Juggle Work, Family, Spouse, MPN, And Your Own Emotional Well-being?
A myMPNteam Member asked a question 💭

I began thinking about the tremendous changes a diagnosis of an MPN brings to one’s life. For me as an old nurse, but one who always tries to keep abreast of what’s going on in the medical world, it was a shock to be told after routine annual labs that I was being referred to an oncologist due to my CBC being “out of whack,” with the likelihood of a blood cancer that I had never heard of. Then came the very painful bone marrow biopsy with confirmation of the JAK2 mutation pointing to… read more

posted February 15
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A myMPNteam Member

Angela, thanks for the hug and back at you. I hope this is one of your good days. I know exactly where you’re coming from.

posted February 22
Is Anyone Taking Part In The Rusfertide Trial And How Has It Been For You; Any Side Effects?
A myMPNteam Member asked a question 💭
posted December 4, 2022
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A myMPNteam Member

Thanks again Cathy! You are such a wealth of helpful information.
Thank you, Christina

posted December 12, 2022
Are Others With Well-managed ET Considering Getting A Covid Booster Shot This Fall?
A myMPNteam Member asked a question 💭

I had two Pfizer vaccine shots in the spring of 2021, a booster in Nov. of 2021 - and then actually had a very mild case of Covid this past summer (2022). I get a flu shot every fall and I’m in general good health so am not sure I need another Covid booster at this point. So I’m curious what others are doing.

posted November 3, 2022
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A myMPNteam Member

Its a personal decision, thankfully, in our country! I got the first Pfizer shot, then decided against it. One of my doctors said I must get it, her partner said 'absolutely not. I've looked at the… read more

posted April 29
How Long Does Hydroxyurea Take To Reduce Blood Counts
A myMPNteam Member asked a question 💭

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
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A myMPNteam Member

Hi Millie, I appreciate hearing your reassurance and experience with the platelet "ups and downs." But 705??? It has never been that high over the four year history of PV (highest ever in 500's). I am… read more

posted 2 days ago
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