Myeloproliferative Neoplasms Questions and Answers | myMPNteam

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742 questions
"Hemocratic"
A myMPNteam Member asked a question πŸ’­
A myMPNteam Member

Hematocrit above 45 is associated with a higher risk of blood clot/stroke. Keeping it below 45 lowers the risk. Hope this helps!

posted 5 days ago
Why Is Democratic Blood Supposed To Be Below 45, When Normal Range Is Below 51?
A myMPNteam Member asked a question πŸ’­
A myMPNteam Member

I think maybe you meant Hemocratic....

posted 4 days ago
How Are PV People Handling The Common Cold. 3 Yrs Into PV 6 Mths On Hydrea, Common Cold Struck Me Pretty Badly For 4 Days
A myMPNteam Member asked a question πŸ’­
Is It True Ppl Like Us With A Blood Disorder Are Told To Not Fly, Or Go To High Altitudes?
A myMPNteam Member asked a question πŸ’­
A myMPNteam Member

problem in not moving alot in plain

posted 5 hours ago
I Am Trying To Find Info On What Foods I Shoukd Or Should Not Eat If I Have PV And Metabolic Syndrome.
A myMPNteam Member asked a question πŸ’­

I am 5'1 and weigh 265 lbs so I am trying to lose weight and was just diagnosed with PV. I lost 40 lbs before being diagnosed but now am wondering if I need to change my diet and supplements.

A myMPNteam Member

Hi Carol
Losing weight I think is always a struggle and I can only say what works for me. I am not a health care professional. I stay on a low-carb Mediterranean diet because I have diabetes and I… read more

posted 7 days ago
Recent Blood Results Came Back, With Platelets Up,RBc Under Normal,mcv And Mch High And Billibrun High, Anyone Had This?
A myMPNteam Member asked a question πŸ’­
Has Anyone Taken Lagevrio For Covid With PV? I Am Soo Sick With Covid. Appreciate Any Advive To What Will Make Me Feel Better! Thanks
A myMPNteam Member asked a question πŸ’­
A myMPNteam Member

I have PMF and contracted Covid twice
Each time had the 5 day course of 8 tablets per day and on each case improved my condition rapidly!
I would have again , however hope I don’t getCovid again.

… read more

posted February 18
Anyone Dismissed By A MPN Specialist? Next Steps To Find Care?
A myMPNteam Member asked a question πŸ’­

I was diagnosed a few years ago by a wonderful physician who spent 5+ years trying to figure out what was wrong (ET-CALR Mutation). He transferred to another state and program a week after I finally got diagnosed. For the past two years I've been trying to connect with another doctor who will help me with my diagnosis.

I went to a second opinion appointment with a MPN specialist this month and was dismissed and told I was misinformed about my diagnosis. I don't believe this to be true as I had… read more

A myMPNteam Member

Doctors are like PC technicians line up as many as you want and they will always say the other ones did it wrong

posted February 14
Thoughts On Resveratrol?
A myMPNteam Member asked a question πŸ’­

PV 5 months, I have been on a roller coaster ride with the Hydroxyuea from 1000 to 1500 (good levels 42-43 no Phlebotomies for 2 months) Dr. drop to 500 in a month (levels shot up 47.8) and presently 1000HU daily & 81 Aspin.

Has Anyone Heard Of High Doses Of Hydroxyurea Bringing Down Folic Acid Levels In The Body, Requiring Supplementation?
A myMPNteam Member asked a question πŸ’­
A myMPNteam Member

I don't know about folic acid levels, but it can cause macrocytic anemia - which can be confused as a folic acid deficiency.

posted February 12
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