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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.
May 25, 2025
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Answer Summary

Members shared diverse experiences comparing Hydroxyurea to Jakafi, with many describing Jakafi as highly effective in bringing blood counts... Read more

Members shared diverse experiences comparing Hydroxyurea to Jakafi, with many describing Jakafi as highly effective in bringing blood counts to normal with fewer side effects, though some reported issues like burning feet, itching, or symptom flare-ups when stopping the medication abruptly. Several members highlighted practical strategies for managing side effects, including adjusting dosage timing, splitting pills, taking breaks under medical supervision, and switching to alternatives like Besremi when needed. A recurring theme was the importance of working closely with a hematologist to find the right balance, understanding that what works well for one person may not work for another, and recognizing that symptoms can be influenced by multiple factors including age, disease progression, and other medications.

A myMPNteam Member

I was able to reduce mouth ulcers to almost nonexistent by splitting my Hydrea dosage between am and pm, and getting them down quickly with water at the ready.

June 11, 2025
A myMPNteam Member

Eugene, my bloodwork is good, hemaglobin went down some and I started feeling fatigued so Dr cut my Jakafi to once a day instead of twice. My feet still give me a fit but I was having trouble with them several years before my diagnosis. Probably just getting old😉 I go for walks and try to walk at least 30 minutes but like to do an hour. That seems to help me feel better. I'm ET/PV Jak2, my Dr said I'm in tge gray area between ET and PV. Anyway I know the PV causes fatigue so I just go with it . I'm also on a blood thinner and that probably has something to do with how I feel. I think with everything I'm doing great! Hope you are good, can't remember if you're over 60? Wish you well.

May 27, 2025
A myMPNteam Member

I was on jakifi for a year then had to stop for five days due to covid and my symptoms came back with a vengeance my itching was unbearable. Although I should had known better because I had read it was not advisable to abruptly stop taking it because symptoms would come back worse but, I listened to my hematologist. Now I am on besremi still have to take meds for the itching but is not as bad and my platelets have come down to normal.

May 25, 2025
A myMPNteam Member

I have been on Jakafi for over 2 years and it has been very successful for me with no side effects. On 2 separate occasions I had severe infections (UTI and flu) and my numbers were old but with proper treatment and reassurance from my oncologist they quickly returned to normal.

May 25, 2025
A myMPNteam Member

I guess it depends on your numbers. If they are under control and you tolerate your dosage o would question his reasoning

May 25, 2025

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