I was diagnosed with MF 2 years ago after about 15 years with Polycythaemia vera (PV).
My “haemo team” are considering switching my meds from Ruxolitinub to Momelotinib. Anybody out there with thoughts on effects/side effects?
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Hi @Mary48 a great big welcome to our form
I hope others will be able to share their experiences for you.
Personally I would ask my medical team my questions as they have probably considered these aspects when considering switching your meds.
I look forward to hearing more about you.
Please do let us know how you get on and take care and really look after yourself yourself
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Hello @Mary48 and welcome to this forum. I have myelofibrosis and was on Hydroxycarbamide for my many years as my platelet count was high when first diagnosed in 1992. Things gradually changed and my platelets were on the low side. I was started on Ruxolitinib in 2017. It really helped to ease the bone pain and enlarged spleen but it caused my haemoglobin to drop quite sharply. Consequently I have required numerous transfusions of red blood cells which has resulted in iron overload. Fortunately I was switched to Momelotinib in May 2024. It took a while to adjust but I am pleased to say my haemoglobin level is much better and I haven’t needed a transfusion of red blood cells for months. I wish you well. Willow x
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Hi Willow, thanks for your reassuring reply. I’m due to see the consultant in a week so ‘watch this space’.
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Hi @Mary48 and welcome to the forum.
I can see others have already shared their experiences with you and I hope that has helped.
Please keep us updated following your consultant appointment next week.
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Hi
I switched from Ruxolitinib to Momolitinib about 7 months ago and not had a blood transfusion for about 11 months. So far it’s working well
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