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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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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 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.