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A myMPNteam Member asked a question 💭
Delhi, CA
July 6, 2024
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Answer Summary

Members discussed treatment options beyond Jakavi (Jakafi) for myelofibrosis, with several sharing their own medication journeys including... Read more

Members discussed treatment options beyond Jakavi (Jakafi) for myelofibrosis, with several sharing their own medication journeys including switches to Ojjaaro, Inrebic/Fedratinib, and Momelotinib, while noting that multiple JAK inhibitors remain available if one stops working. Several members described common side effects like water retention and weight gain with Jakafi, the importance of monitoring spleen size before considering a transplant, and practical considerations such as taking B1/thiamine with certain medications to prevent serious complications. A recurring theme was the personalized nature of treatment progression, with members emphasizing that younger patients may be good transplant candidates, and that proactive spleen management and exploring donor matches early can help prepare for future treatment steps.

A myMPNteam Member

I just recently switched from Jakafi to Ojjaaro. It worked really well for me for almost 3.5 years.

August 3, 2024
A myMPNteam Member

Adding more specifically to my prior post, if Jakafi stops working for you, there are other JAK inhibitors to try. Also, you seem relatively young and may be a good candidate for a transplant. If Jakafi is currently helping you, that’s great - probably too early to worry right now.

August 4, 2024
A myMPNteam Member

I have been on Jakafi fir 6 years.

July 27, 2024
A myMPNteam Member

Glad you’re responding well!! I did so well on Jakafi for 3 years and my spleen reduced by almost 50%🙏🏼

December 25, 2024
A myMPNteam Member

I had water retention and weight gain issues with Jjakafi. Pretty common and same issues with Molmolitnib which makes me think it was repurposed from Jakafi.

August 4, 2024

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