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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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Hydroxurea Symptoms Vs PV Symptoms
A myMPNteam Member asked a question 💭

Prior to being diagnosed with PV in 2021 I was not having any fatigue, dizziness or brain fog. Now I have all of above. Do others have an opinion my symptoms are results of the hydroxurea or my PV. My suspicion is the drug.

posted 19 hours ago
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A myMPNteam Member

Thanks 😎

posted 14 hours ago
Which Jak2mutation Is Considered To Be More Aggressive.
A myMPNteam Member asked a question 💭

Jak2Exon12 or jak2v617f

posted 1 day ago
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Can I Have Night Sweats Even Though My Bloods Are Good.
A myMPNteam Member asked a question 💭

Night sweats keep me awake. I also have nightmares most night.

posted 1 day ago
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A myMPNteam Member

Marjorie, I'm so sorry to hear you're having such a hard time sleeping. It's been a few weeks now since your surgery, and I pray for you every so often when I remember our conversations, hoping that… read more

posted 1 day ago
Mutations
A myMPNteam Member asked a question 💭

Hello,
Does anyone have more than one mutation? I originally had just JAK2. However, now my blood is showing two other mutations..

JAK2 V617F

FBXW7

CALR

posted 4 days ago
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A myMPNteam Member

I just have JAK2.

posted 4 days ago
Hydroxurea Vs Jakavi
A myMPNteam Member asked a question 💭

My hematologist is thinking about switching me from hydroxurea to jakavi . I’ve been on hydroxurea for 2 years but my hematacrit and hemoglobin go up and down like a yo-yo. My doctor thinks Jakavi might give me more stable blood counts. However my research indicates a higher chance of skin cancers with Jakavi. Has anyone experienced more serious side effects while on Jakavi.

posted May 28
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Iron Infusion
A myMPNteam Member asked a question 💭

Just had my first iron infusion 2 days ago. Currently feeling worn out. Is this normal after an infusion and normally how long does it take to start feeling more energy. Last month my hemoglobin was 112 and hematacrit was .44.

posted May 28
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A myMPNteam Member

Thanks. Hopefully I’ll feel better soon.😎

posted 4 days ago
How To Know If You Having A Gout Flare Up If You Are Also Having Multiple Bone And Joint Pain?
A myMPNteam Member asked a question 💭
posted May 28
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A myMPNteam Member

Not knowing if you have been diagnosed with gout in the past, but if so, then you know that usually the big toe is affected and becomes extremely painful, red and swollen. However, other joints can… read more

posted May 28
Has Anyone Who Has PV Had A Knee Replacement? If Yes, Did You Have More Bone Pain Afterward?
A myMPNteam Member asked a question 💭
posted May 28
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Wondering If Anyone On Pegasys Or Jakafi And Once Your Platlits Are In Normal Range Did You Go Off The Meds?
A myMPNteam Member asked a question 💭
posted May 28
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A myMPNteam Member

Im taking Jakafi. My pallettes are down to 300 so I still take the Jakafi for my spleen enlargement

posted 6 days ago
CNL - CSF3R
A myMPNteam Member asked a question 💭

Hi there!

Does anyone on here have the CSF3R gene mutation? I just did some research that connected it together with CNL. I would just like to hear your story.

I have the CSF3R gene mutation and was diagnosed with an early and evolving MPN in 2/22. It’s just my guess and hopefully will be finally able to get a proper diagnosis at Vanderbilt next week. I’m so ready to find out what I’m dealing with.

I appreciate any input, thank you! And I hope everyone has a wonderful Friday! 😊

posted May 26
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A myMPNteam Member

Hi Faith2, thank you so much for sharing your story with me. It’s very encouraging to know I’m doing what needs to be done. I’ve had the GI bleeding as well with a number of trips to the ER and being… read more

posted May 26
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