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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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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

A myMPNteam Member said:

Lorraine: So true. It feels like “gaslighting” in a way
In any event, at this point I’m convinced that Occular Migraines were definitely related to my ET, and taking HU seems to have eliminated… read more

posted 22 days ago

One Month Ago I Was Diagnosed With PV . Now Taking 1000mg Of Hydroxyurea Daily With A Phlebotomy Every 3 Weeks.

One Month Ago I Was Diagnosed With PV . Now Taking 1000mg Of Hydroxyurea Daily With A Phlebotomy Every 3 Weeks.

Once I began taking hydroxyurea my tinnitus has increased immensely and I am experiencing a lot of temporal, head and eye pressure discomfort/pain. I was wondering if these are normal side effects of the drug. My ears started ringing 8 years ago but not with the current intensity. I have a meeting with my hematologist this week to discuss my blood work after a month on hydroxyurea. All comments appreciated.

A myMPNteam Member said:

Thanks for the information. I have been on 1000mg hu for 4 months and a phlebotomy every 3 weeks. My hematocrit was .62 when I started and after this weeks bloodwork I am know at .45. I have no… read more

posted 23 days ago

Has Anyone Diagnosed With PMF Had High Hemoglobin And Hematocrit Values In Addition To High White Blood Cell Count?

Has Anyone Diagnosed With PMF Had High Hemoglobin And Hematocrit Values In Addition To High White Blood Cell Count?

A myMPNteam Member said:

I am post PV MF and my HGB has dropped significantly and I've had two transfusions and iron infusion in 8 weeks. My WBC's are always high and HCT within normal limits. I'm taking Jackifi.

posted 24 days ago

Osteoporosis With MPN’s

Osteoporosis With MPN’s

I have osteoporosis, having PV, and ET too... I also are positive for having the JAK2 mutation.. Can I take PROLIA, recommend by my GP ??

A myMPNteam Member said:

I have MF and take prolia. Both prescribed by my oncologist

posted about 2 months ago

Numbers Going Up, Again.

Numbers Going Up, Again.

I've been on hydrea 500mg for about 6 months, platelets were over 900 and after going up and down the seemed to settle around 560, today they are 707, have to go back in 3 weeks to check again. Does anyone else look at all the numbers they tell you not to be concerned about, and are concerned anyway? This is such a rollercoaster.

A myMPNteam Member said:

Have had high platelet counts for over 25 years. Was taking Anagrelide for many years. Tried Hyderabad but I couldn’t tolerate. Once JACK 2 discovered, went on Jakifi and platelets have been under… read more

posted about 2 months ago

I Am A Man Recently Diagnosed With ET, February Last Year. Is This Condition Something That I Was Born With?

I Am A Man Recently Diagnosed With ET, February Last Year. Is This Condition Something That I Was Born With?

A myMPNteam Member said:

This is a question for your MD. I'm told my PV is caused by a spontaneous gene mutation. You may want to peruse some of the medical articles on this website for more info.

posted about 1 month ago

What Is The Prognosis & Life Expectancy For Someone Who Has ET With JAK2 Mutation? I Took Hydroxyurea For 13 Years, Now On Jakafi.

What Is The Prognosis & Life Expectancy For Someone Who Has ET With JAK2 Mutation? I Took Hydroxyurea For 13 Years, Now On Jakafi.

A myMPNteam Member said:

My friend has PV 18 years, on high doses of Hydroxyurea until it quit working so she was started on Jakalfi about 2 yrs ago, her numbers are kinda crazy, her cholesterol has gone up,up,up but she… read more

posted 3 months ago

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.

A myMPNteam Member said:

I guess my only choice then would be the Jakafi. My platelets have just surpassed the high point so I know that the Jakafi does lower platelets so that sounds more right up my alley.
Take care!

posted about 10 hours ago
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