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

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Hello - 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!

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Replies to "Hello - I am contemplating going on momelotinib or a clinical trial that would address my..."

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.

@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.