Momelotinib

[Marina1964]

Good day! My husband has post-polycythemic myelofibrosis. Since 2015 he has been taking ruxolitinib. Over the past year he has lost 20 kg, he has anemia and thrombocytopenia. The doctor recommended switching to Momelotinib. Maybe someone has the same diagnosis and is taking Momelotinib?

[grandpa101]

good morning I have similar problems with MF my haematologist is recommending a change from Rux to momelotinib we are having a meeting shortly and I will update you then

Have a good new year

[Marina1964 in reply to grandpa101]

Thank you!

[Cazbolac]

Hello. I have primary myelofibrosis. I had been on Rux since 2014 with good results but it sadly stopped managing my symptoms around May of this year. My consultant started me on Mom and my bloods have improved generally. I am not sure how well it is managing my MF as I have some concerns about my WBC count and I am awaiting the results of my recent 4 bone marrow biopsy. However as I am now 10 years of suffering from MF, it could be that I am reaching a stage where drugs may not help as much as before. Stem cell transplant has been suggested. I would say that the Mom is helping me to tick along although I did suffer bad nausea when I started it. I have heard from others that Mom has helped their thrombocytopenia so that is positive news.

I wish you well and hope that changing to Mom will prove helpful.

Best wishes.

[Marina1964 in reply to Cazbolac]

Thank you!

[Marina1964 in reply to Cazbolac]

Please share your experience, what was your platelet count when you started taking Momelotinib? Did you feel better while taking momelotinib? How much did your haemoglobin rise?

[Cazbolac in reply to Marina1964]

My platelets went down to 36 but have increase to 102 since being in Mom. My haemoglobin has also improved. However it is my white cells which are causing concern for my MF progression.

[Marina1964 in reply to Cazbolac]

My spouse's platelets have dropped to 39. The doctor told us to wait one or two weeks before taking momelotinib. Ruxolitinib should be discontinued during this time.

[Marina1964 in reply to Marina1964]

But on the sixth day of cancellation of ruxolitinib my husband felt worse: weakness and shortness of breath increased. So your experience is important to us. Thank you very much for your reply.

All the best to you!

[lizzziep]

I have post ET MF and was changed from Rux to Momelotinib about 3 months ago. My anaemia was getting worse, although I mostly managed without transfusions.

I do not have many MF symptoms (fortunately) . Since going on Momelotinib my haemoglobin has improved, but my platelets went from under 400 to over 1000, so I have had hydroxy added in for the last few weeks and platelets now in normal levels. The hydroxy is gradually being reduced.

Again, fortunately, I haven’t had any particular side effect from the drugs.