Momelotinib treatment for PV

Hello Jem1,

I am still on Ruxolitinib but thinking about asking for Momolitinib as I hear it reduces the spleen and doesn’t cause the HGB to fall, both problems for me. But I have heard from other users that they do not tolerate it well, many complaining of stomach upsets but getting relief by taking it last thing at night. Ruxolitinib has been a game changer for me in other ways, so it’s a hard decision. We can only try these drugs. A stem cell transplant, the only cure, if successful,  is not an option for me. How about you?.

best wishes,

Naugus

Note: I suffer from myelofibrosis not PV

Thank you Naugus for your reply as it is good to hear that others have had some sort of problems with it as all meditations do not tolerate some and others do. The problem I have is that I now have painful peripheral neuropathy in my feet and hands, and when I sit down my feet gradually turn purple and they think this is from taking Ruxolitinib and why they want to change medication.Have you ever heard from anyone on the forum that this has happened to 

Thanks very much for your help

JEM

I have been experiencing neuropathy in my feet but not to the extent you are having..how long have you been taking Ruxolitinib?, I have been on it about 18 months. I do read of other suffers with the same problem but again no one has mentioned their feet turning purple from lack of blood I assume. You can but try the change and hope it helps. 

I hope you are seeing an MPN specialist.

I have been on Ruxolitinib since May 2024 taking 5mg twice a day. Last September and again September this year I had 2 pints of blood via blood transfusion as I am anaemic and on both occasions afterwards was like night and day, my energy levels were great but only lasted a short time until things went to my new normal. I think I will give Momelotinib a try as it can’t be any worse than what I am like just now, though I think the other health issues I have are not helping. When I was first diagnosed in 2023 I was told about the stem cell being the only answer but was never told if I was able to get this or maybe not viable with the other health issues I have. I do have a good team looking after me though.

Thanks again for your help and support 

Jem