Anyone on Momelotinib/Ojjaara?

[Miriammusic]

Hello all,

As I continue on my Jakafi journey, I am relatively happy with my counts, as is my doctor. However, the dreaded weight gain continues. 13 pounds thus far and counting. If I could be assured (ha, ha as if) somehow that this would be it and the weight would stabilize, I might consider staying on it but of course no one seems to know exactly how the mechanism works. Is it the water retention in cells, the leptin? My hemo/onco told me today that he has been reading data about momelotinib, (brand ojjaara) and it has surpassed Jakafi in terms of results. Since it became FDA-approved for post-polycythemia myelofibrosis, he has several patients who are doing very well on it, and their counts have improved vs. the Jakafi. I was just wondering if anyone on this site is on it or has any experience? Thanks so much in advance!!

[TLJ-1]

It is encouraging that your doctor says several patients are doing well on momelotinib. I had been following its development, as I thought it might be useful for me at some point. There was a review of momelotinib as of last fall published here: Haematologica 108, 2919, Nov, 2023. My personal summary of the review is that with more side-effects and less symptom improvement (TSS score) than ruxolitinib, momelotinib is best reserved for cases with pronounced anemia, since it does not drive down red blood cell counts as ruxolitinib does. I can only hope that clinical use proves in the long run that momelotinib is better than that.

[BlackCatMan]

I have been on Momelotinib for about a year. Ruxolitinib had not been doing anything for me. Momelotinib has been a success in that it has stopped my haemoglobin and platelet counts from falling (although both remain lower than normal). It has done nothing to reduce the size of my enlarged spleen and it does not combat fatigue. I am suffering no side effects. Overall, it is good for me

[Artjoy]

I’m on Okjaara , since May 2 (Jakafi had stopped working after 10 years, which is a long time—longer than average). I’m doing well on Ojjaara. It has raise all my counts, some into the normal range. Except for the usual fatigue, I’m feeling good (and I’m pretty active). It remains to be seen whether it will substantially shrink my enlarged spleen.i have not noticed any unpleasant side effects. So my experience with Ojjaarra has been positive. Certainly no weight gain with it. I would encourage you to give it a try, especially knowing you can always go back to Jakafi if for any reason you don’t like it.

[Miriammusic in reply to Artjoy]

Thanks for all the good info. I am going to give it an other month because I am traveling, and then will reassess everything.

[ToffCha]

Hi M

I have been on Jakavi for almost a year for Primary MF. I had been on Pegasys injections since my diagnosis in 2020 but the side effects were giving me the heeby jeebies. My specialist then got approval for Jakovi and I haven't looked back. I take 15mg twice a day. I have noticed some slight weight gain but it has not been an issue. Bit less chocolate and pinot gris for a day or two and it goes down again. I have a runny nose which is more of a nuisance than a worrisome side effect though side effect it is. I get a bit breathless from any extra physical activity but I can cope with that. An evening with Stormy Daniels would probably kill me but I play golf twice a week driving around in an electric cart. My bloods are good, platelets too so I am a very happy camper of 81 years old.

Canberra 11 August 2024

[Hazelnut2020]

hi, I am in HU now, since Aug this year but not seeing any improvement in my blood count. I am thinking of starting either Pegasys or jakafi or besremi in January . Now that you mentioned Ojjara and did read about it recently, I will ask my doctor about it. I don’t know if my insurance will cover this drug . I am on Medicare. Will let you know after my visit with my doctor on Nov 12th

[BadgerPV]

I will be starting Ojjarra this weekend. Dr. felt either Oj or Jakifi were similar enough to choose the one I wanted. My father was on Jakifi and it didn't do well for him, so Oj was the choice. Are you all on the Jak2 inhibitors long term to prevent the need for BMT?

I was PV for 2-3 years with Peg injections, but numbers changed rapidly in Nov and now PMF level 3.... a bit shocking, but at 50 feel great and wouldn't know I had PMF without the enlarged spleen and periodic night sweats. Looking at BMT sooner than later as I have two additional gene mutations.... I know lucky me. Need to shrink spleen. Have any of you on Ojjarra had luck reducing size of spleen?