Does Anyone Have Ringing In Their Ears Intermittently With PV? | myMPNteam

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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

I have tinnitus big time, more now on the Jakafi

posted 4 days ago
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

if i remember well there is a different view in confirming MPD diagnose between USA and EUROPE

posted 20 hours ago
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

I live in Germany and my hu comes in a tin foil bubble package. I was told to wear gloves and wash my hands, that this pill is toxic by my doctors. It comes in a cardboard box which is where I store… read more

posted July 25
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

I had one last week, and if I did not read about it on this site, I would have thought my vision was going south! they are so strange, my left eye had the biggest jagged edged, I could not believe… read more

posted 3 days ago
Are You Always In A Quandary How To Communicate Better With Your Doctor?
A myMPNteam Member asked a question 💭

Patient Power has a good article that I wanted to pass along. I think this is a frustration for most of us at one time or another. The title is:

Eight Ways to Improve MPN Doctor Communication

posted August 4
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A myMPNteam Member

That is very poor communication at a minimum. In fact, it sounds rather disrespectful, as though he expects blind obedience from patients. It would be far more informative and professional to say… read more

posted August 19
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

First and foremost, know it is not your fault you have a MPN. Many of us feel guilt when getting this diagnosis, as current societies have a trend of putting responsibility for health on individual's… read more

posted September 22
How Did A Bone Marrow Biopsy Clarify Or Alter Treatment Of Your MPN?
A myMPNteam Member asked a question 💭

Many of you were so kind to reassure me about the bmb that was in the planning stages a few months ago. I am 87 years old, diagnosed with PV in 2019, did well on hydroxyurea and aspirin for four years, maintaining hct level within target range, and only two phlebotomies during that time. Stopped taking the HU in January of 2023 due to likely side effects of HU (swallowing difficulty, hoarseness). Referral to ENT specialist with trial of omeprazole and anti-reflux diet because doctors doubted my… read more

posted September 8
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A myMPNteam Member

I have been an RN for the last 30 years, assisted with bedside BMB for various medical issues. (None were for MPN). I never heard of MPN’s until recently. Anyway, i asked a lot of questions and my Dr… read more

posted September 9
When Did You Start Taking Drugs To Decrease Platelets?
A myMPNteam Member asked a question 💭

Hey lovely people, hope you’re all doing great
I want to know when did you start to take drugs to lower platelets counts? How long after diagnosis and at which platelt count? What drug did u take
Also state if you have any condition other than MPN that increase your risk.
I am on anagralide and aspirin as my platelets are over 900 but i want to ask my doctor to stop the anagrelide and only stay on aspirin.
Want to know your experience.
I am 51 wit ET (CALR+) and i also have high cholesterol… read more

posted March 27 (edited)
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A myMPNteam Member

I was diagnosed in august 2019. They started me on Hydrea (way too long on it as I had severe GI issues). August 2022, put on Pegasys with no side effects at all. My platelet count went down after my… read more

posted September 19
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

Hi MaryAnn,

I have ET with MPL mutation diagnosed in 2020 when I was 38 years old. Currently on baby aspirin
I am currently on sick-leave after I had a SARS-COV-2 infection in April 2020 and several… read more

posted August 4
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