Primary Myelofibrosis with JAK2: Anyone have Ojjaara (momelotinib)?

@loribmt
Hello Lori ! You are so awesome! So grateful that you are there for us!
Yes I just returned from my ONC/Hem PA appointment
Blood test not great but some numbers improved by a hairline! MY RED BLOOD CELLS STILL ONLY 3.4 but hemoglobin hairline higher
Platelets only 100 so up !
Staying on 150 mgs of
OJJAARA MOMELOTINIB
TAKING ZOFRAN THREE TIMES A DAY ! Eat less
I have a history of acute vitiligo so I went and got treatments just in case my vestibular nerves are injured by previous severe vomiting ! Constant nausea and dizziness was a big burden!!! It’s calmed down several days now so will continue the OJJAARA !
The PA WAS CONCERNED ABOUT MY INTERUPTING MY DRUG DURING THE ACUTE NAUSEA!!
My PA BROUGHT UP THE BMT ! I had stated that I would not go that route !
I have only been on MOMELOTINIB FOR TWO AND HALF MONTHS !
She was concerned THAT MY BLASTS HAVE INCREASED FROM 4 to 7 percent! So now I will learn about BLASTS !!
The pharmaceutical company published that six months of OJJAARA NEEDED TO SEE HOW ITS WORKING!
I told her that I believe that the med is helping because now I can walk up the stairs without getting exhausted extremely out of breath!! I feel that is a good indication from my body !
I hope s as nd pray that all of our connect friends will be well enough to celebrate this Christmas!! Our lives have been greatly impacted by these serious rare illnesses!! I h as ve accepted the fact that I can not physically do what I used to even six months ago! It depresses me but I continue to stay positive so I can spend time with my precious grandsons !! I will not surrender yet !! There is still life in me , so I will rest ,
Then get up and get going !
Friends ! There is a quote
“REST IF YOU MUST , BUT DO NOT QUIT “
BLESSINGS TO EVERYONE
HANYA

Hi @hanya I think tomorrow you’re having blood tests and an appointment with your PA! Just wanted to wish you the best of results. Don’t forget to take your list of questions! ☺️

Have you been feeling less dizzy and nauseated?

@snakebite
Dec 3 , 2025
Hello friends! I read posts back from November 2024
And found relevant information! All about
OJJAARA FOR MF WITH ANEMIA !
My update! Initially started OJJAARA 200 ! Bad side effects! Reduced down to
150 mgs , for about six weeks! Some side effects! Vomiting ! Paused for four days during thanksgiving
Restarted! Developed VERTIGO SYMPTOMS
GOING FOR PHYSICAL THERAPY TO IMPROVE DIZZINESS AND NAUSEA
GOING ON 12 th for blood tests and see oncologist PA
I WILL ASK TO REDUCE DOSE OF OJJAARA TO 100 mgs ! Can not function with constant dizziness and nausea!!
I read post from MF PATIENT WHO IS ON 100 mgs and doing great ! Eventually doc at MAYO INCREASED DOSE !
I wished I had started on lowest dose then increased!
Last appointment showed no improvement but not got worse! Hopefully! In nine days, tests will show some improvement!!
Thank you for all of your posts which are helpful!!
Wishing all of you BEST HOLIDAYS HANYA

Thank you @snakebite81 !

For me Ojjaara was a game changer. I went from hgb 7- to 12-13, and it has held for over a year. My major spleen issue went away. I've expanded on my case in several post so I won't go through all of that again. But the bottom line is that I'm 78 yrs, been fighting MF for MANY years. I was down to surviving on Transfusions and Ojjaara turned all of that around. I now have a more than normal life for a 78 yr old. I walk 2 mi every morning, attend a full exercise class three time a week, travel in my RV, and have resumed my competition action events at the World Games and other events around the Western US. My side effects are well worth it, and so far very manageable. IMO, Ojjaara is well worth trying. It has completely changed my life. Don't know how long it will last, but for now I'm enjoying life to the fullest.

@davi0937 Being in the best physical shape you can before a SCT is very important. My transplant doctors told me that I was an excellent candidate at 69 with advanced fibrosis because of the very good physical shape I was in and that it is contributing to my good recovery, outside of some GVHD symptoms (dry eyes and elevated liver enzymes primarily) that are manageable. I feel most fortunate that I was able stay very active during a long period of severe anemia, as many are debilitated by it.

My transplant was last October. In May, I started back doing our yard work and in June I started back playing golf. My stamina is mostly back to normal, except when I play golf on days it is really hot. I lost about 20 pounds after the transplant, which seems to be mostly loss of muscle mass and I am having trouble regaining that even though my appetite is good. I have started doing dumbbell weight training at home, but look forward to getting back in our club’s fitness center for my regular workout when my hem/onc says it’s okay.

So, keep going with your exercise routine as long as you can before you have to have a transplant. Keep a positive attitude, and I wish you much success as you move forward.

Thank you @mikecaldwell

My hemoglobin is 8 and I’m just on iron. I’m also very active- swim, run, CorePower sculpt and bike lift. I’m trying to stay in shape for a BMT if they decide it’s time. Meanwhile the clinical trial MD wants me to join phase 2 of a trial that addresses low hemoglobin. I’m nervous about a clinical trial not knowing what the side affects are. It does sound like momelotinib doesn’t have the side affects it lists in hearing from others here. I was diagnosed this last June. It’s been a shock considering I was planning on retiring in April 2026 and hiking the El Camino with my husband. We would still like to go but uncertain on where I will be healthwise. Thank you so much for responding!

@davi0937 After converting to Myelofibrosis from ET, I was having to have frequent blood transfusions (about 25 in total) to keep my hemoglobin above a 7.0 baseline. After recommendation to enter a clinical trial by doctors at MD Anderson, I entered that trial at Vanderbilt Cancer Center. I did not respond to the study drug and was removed from the trial. My hem/onc at home then put me on pacritinib, but after 6-7 weeks, it was not helping the anemia. He then put me on momelotinib, and I responded almost immediately. It kept my hemoglobin above 7.0 for long periods of time only needing a couple of blood transfusions over the 5 months I took it before having an allo SCT due to advancing fibrosis and my age. I never had any side effects while on the momelotinib. For what it’s worth, even though hemoglobin levels in the 7-8s is considered severe anemia, I was able to keep a very active lifestyle within those ranges and consider momelotinib a game changer for me, especially with iron overload risk from frequent transfusions.

I volunteered for a clinical trail but was worried that I wouldn’t get the real medication. I’m only taking a half dose of Ojjarra and stayed there because we saw an improvement.
Whatever you choose to do, you can discontinue it. Good luck. I’m still feeling healthy, like nothing is wrong

Thank you @cindyem . I’m really grateful for your reply. You are correct that ojjarra aka momelotinib is not in a clinical trial. I will be given the choice of a clinical trial or momelotinib and wonder which is a better road.