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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.
1007 questions

Is Their Anyone Out There Using The Drug OJJAARA Or MOMELOTINIB? Would Like To Talk With You. Thank You, Paul

A myMPNteam Member asked a question 💭
A myMPNteam Member

Diagnosed with myelofibrosis in 1982. No medical intervention needed until March of 2020. Began with JAKAFI 5 and went to JAKAFI 10 some time later. Was in a 6 month blind trial in spring 2022… read more

posted July 15

I Need Ruxonitilb/ Jakavi

A myMPNteam Member asked a question 💭

Hi everyone. I hv been in Ruxonitlib/Jakavi for past 4 months and today in our government hospital clinic they have informed me that the drugs are not available and it will take few weeks to import drugs. And i check several pharmacies and even they dont have stocks. I live in Sri Lanka. Is there possibility of sending me Ruxonitlib 10mg for 7 days till i find a way to import the drug. Thanks everyone

A myMPNteam Member

There is not a way for any individual to do this.
Check with your officials, hospitals, any institutions that might be able to assist you. I pray you will find away to receive your medication.

posted July 5

Is Jakafi Better Than Hydroxyurea For PV?

A myMPNteam Member asked a question 💭

I take hydroxyurea 500mg daily and it's controlling my PV very well. But I am extremely fatigued - to the point of making it hard to even work. I am considering trying to get Jakafi and I am wondering if I will still have the fatigue due to having to keep my blood counts low. My Hgb is 13, Hct 37, RBCs 3.5, Mcv 109. Any advice? Is it the hydroxyurea making me so tired? Or is this life with PV?

A myMPNteam Member

PV diagnosed in 2011 and HU treatment continued through 2018. Side effects with HU included skin aberrations near each ankle with a skin graft for my left ankle/leg. Initiated Jakafi in 2018 and all… read more

posted July 6

Can ET Cause Gout

A myMPNteam Member asked a question 💭
A myMPNteam Member

My second oncologist who was likely cutting edge back in the 80's...the EARLY 80's. When I had an appointment with a transplant Dr locally, he told me to stop it. And next appointment with my new… read more

posted July 14

Any MF Patients On Reblozyl

A myMPNteam Member asked a question 💭
A myMPNteam Member

I have PV and my issue at the my moment is low iron. I read up on Reblozyl though. Very new!

posted June 30 (edited)

Does Hydroxycarbamide Cause Fatigue

A myMPNteam Member asked a question 💭
A myMPNteam Member

Yes… HU causes fatigue.

posted June 30

What Is The Difference Between PV And ET Regarding Platelets?

A myMPNteam Member asked a question 💭
A myMPNteam Member

I done think there’s anything different between ET & PV per se. I have recently ( 4 months ago) been diagnosed with PV and the way the MPN specialist did this was by keeping an eye on my Haematocrit… read more

posted July 6

Why Does Venesection Not Remove Platelets?

A myMPNteam Member asked a question 💭

Anything We Myleofibrosis Patients Can Take To Mitigate The Fatigue?

A myMPNteam Member asked a question 💭
A myMPNteam Member

See a Functional Medicine practitioner. I highly recommend Pegasys Interferon.

posted June 29

Has Anyone Heard How The Clinical Trials Of Rusfertide Are Going?

A myMPNteam Member asked a question 💭
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