Momelotinib

Good to hear that Momelotinib has worked for some on this site. In my case it pushed platelets up to c1900 from 1250, and WBC to c16 from 13. Gave it up on MPN specialist advice. Platelets now c1200, WBC c14. Case of cure is worse than the disease?

[hunter5582]

Sorry to hear momelotinib did not work as well for you. Some with MF with anemia benefit from its lower impact on RBCs. I have heard that it may have less of an impact on thrombocytosis too. I had not heard the same thing about leukocytosis, but I suppose that could happen too. Unfortunately, some of these medication do not do as good a job of managing the underlying disease process intrinsic to the MPN. We are very fortunate that at least we have more than one option now.

Wishing you success in the next stage of managing the MPN.

[Hidden in reply to hunter5582]

Thanks Hunter5582. I guess the next step will be back on Interferon or a trial of something else. As you say there are other options.

[champ30 in reply to Hidden]

Thank you for your feedback on this medication.I'm sorry it wasn't any good for you.Out of curiosity,did it increase your red blood cells?It's good to get all information on momelitinib.... although I know we're all different.

Thanks Lynn

[Hidden in reply to champ30]

Thank you Lynn. You have raised an interesting question. No, my RBCs remained at just below 140 and did not increase. This is reassuring in a way but seems the opposite to what is intended for MMB. Hope your experience of it is better.

[jointpain]

I'm trying to get Momolotinib treatment for my wife for her MF as she is constantly anemic, I can't understand why you were put on Momolotinib as it seems with reds at 140 you cannot be classed as anemic which I have read is why Momolotinib is prescribed! My wife's platelets went up to 1450 last week and yesterday were 440 but she had her hydroxycarbamide doubled to 2 a day.

[Hidden in reply to jointpain]

I guess it was a stab in the dark as other treatments had unwelcome side effects and options were running out. Worth a try though and the main side effect of MMB (mild nausea) was tolerable. Just weird that it had that effect on the cell counts. I wish you luck in getting it for your wife.

[jointpain]

Have you tried Anagrelide? My wife's hematologist just reduced her prescription from two a day to one a day plus the four hydroxycarbamide a week which is when her platelets rose to 1450, but then she did have another COVID jab around then, which does alter her blood test results a lot. Now we have to change the number of tablets to try and get things on and even keel. She's happier having less Anagrelide as we suspect it caused her chronic bleed. And would like it to be zero Anagrelide.

[Hidden in reply to jointpain]

Thank you. Anagrelide was ruled out for me because of cardiovascular risk factors. Had several years on Hydroxycarbamide which ended in a bad foot ulcer (something I should have watched out for better). Then tried Pegasys which led to an e-coli UTI (it’s made from e-coli apparently). Busulfan was ruled out because of leukaemogenic potential after hydroxycarbamide. Then I tried MMB. Now it’s probably back to try Pegasys again. But at the moment I’m doing ok on nothing but aspirin. Pushing for another bone marrow biopsy in order to get a better handle on what exactly I’ve got, although in the world of MPN it seems that there is not much ‘exactly’. Hope your wife soon gets the treatment she needs. Has she had an acquired Von Willebrand Disease test?

[jointpain]

Sorry for late reply we haven't been told if she has had an acquired Von Willebrand Disease test, but will ask about it. Strangely enough the 'new' hematologist did ask about her parents and any dodgy things there, blood wise. I joked that they were brother and sister!! Actually they are related somewhere in the past, both had the same surname, and still do! Your bio says you wish to survive a 2000 platelet count, my wife's been there, and survived.

Keep strong, and walk.

[Hidden in reply to jointpain]

Well, I see that your wife has beaten me to the 2000 milestone! I mentioned the aVWD test because I saw that she has had a chronic bleed. I had a test a while ago which was clear but my haematologist says that aVWD can be acquired at any time and seemed to want me to have another test before the bone marrow biopsy which I have asked for. And that the worry about high platelets was as much - if not more - about bleeding as thrombosis. Good advice about walking. I am putting that into effect this very day. Thanks.