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Primary Myelofibrosis with JAK2: Anyone have Ojjaara (momelotinib)?
I was wondering if anyone can share their experience with Ojjaara treatment. I started having anemia, high platelets, and high white count two years ago. They finally did a bone marrow because I had a JAK2 mutation. The diagnosis came back as PM low risk. I felt fine.
Now my spleen is enlarged, I’m annemic again, and I’m having non intentional weight loss. To me I believe the weight loss is muscle mass.
I have been referred to a Mayo Clinic specialist, who has ordered Ojjaara to be started next week followed by weekly blood tests. He’s also had CT scans done in advance of my spleen, renal system, and liver. I feel I’m in good hands with his thoroughness.
Let me know what side affects you experienced. Thank you.
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@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.
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1 ReactionI 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
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1 ReactionThank 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.
I’ve taken ojjarra for 10 months and have not had side effects at all. It’s taken away some of my spleen pain and lowered my high platelets. I don’t think it is still in clinical trials still. I could be wrong. I’ll ask Dr. Tefarri Wednesday at Mayo Clinic.
You can always discontinue it if you have negative side effects.
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1 ReactionHello - I am contemplating going on momelotinib or a clinical trial that would address my anemia from Myelofibrosis. I’m concerned about clinical trials because the drug is not completely tested. I have also researched momelotinib side affects and am worried about those. Advice? Thank you!
It's 4 more months on Ojjaara and things are still looking good!
Thank you for your response. This is my third week on 100mg and I am doing well. After three months they will decide if I should go on 200mg. However, I did get a bladder infection. Hope that is islolated. Do you mask up whenever you go somewhere around people? Not sure how low my immune system will go.
I have been taking Ajjarra since March of this year. The 200 mg dose was too strong and I kept coming down with flu like symptoms. I’m now taking 100 mg and feel much better. You can take it either way or without good. I recommend taking the pill right after dinner 🥘
Thank you for your feedback. I’m tolerating Ojjarra real well but my platelets are still climbing. I feel great.
It takes some time for the ojjaara to work.you have to give it at least one month before it becomes effective