Please write about your experience of using Momelotinib.

[Marina1964]

My husband has myelofibrosis after polycythemia. He has been taking ruxolitinib for 9 years. Over the past year, he has lost 23 kg, his already huge spleen continues to grow, he has anemia, shortness of breath. The doctor recommended switching to Momelotinib. Please write, does anyone have experience using Momelotinib?

[PT99]

Hi

My experience of Momelotinib is limited as only started it 3 weeks ago but in that time my HGB has increased from 98 to 110, which should help with the anemia. Obviously too early to ascertain the effects on my spleen.

If the Rux is proving no longer effective, then it is probably worth a try.

Best wishes

[Marina1964 in reply to PT99]

Thank you for your prompt reply! Best wishes! I will wait for more news about your treatment with momelotinib.

[lizzziep]

Hi, I was changed to Momelotinib from Rux about November, it was a straight changeover, Rux one day Mom the next. No particular side effects, except weight gain started on Rux continued.

My anemia improved, hg was usually around 75, now over 100, but my platelets went up to over 1000, so I’ve had hydroxy added into the mix, which has helped get the platelets down to normal levels. I am now being weaned off the hydroxy. I also have EPO injections twice a week to help with the anaemia.

I’ve felt fine on Momelitinib.

Hope he improves on it.

[Marina1964 in reply to lizzziep]

Thank you, all the best.

[jointpain in reply to lizzziep]

Hi lizzziep, I've read that Momelotinib doesn't decrease Hgb, did you notice? Or did it drop, hence the epo? My wife is four months in taking Jakafi and started epo five weeks ago, she is due a blood test, but we are still snowed in☹️ her Hgb is probably up as her gums are pink!

[lizzziep in reply to jointpain]

I’ve always been anaemic, but gradually got worse on Rux, even with the EPO injections. Since being on Momelitinib my hg has gone UP from an average of 75 to continuing to be over 100. (102 today) Still not normal levels but a lot better than previously.

Still got a lot of snow and ice here in Yorkshire too. Side roads and paths are really bad, main roads mostly ok. I’m putting off collecting my prescription from the hospital until Monday, hopefully it will be a bit better then. They used to deliver prescriptions but that was stopped a while ago.

[Scaredy_cat]

Has your consultant talked about a stem cell transplant?