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

Posted by cindyem @cindyem, Oct 26, 2024

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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snakebite | @snakebite | Aug 25 8:32am

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.

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davi0937 | @davi0937 | Aug 26 2:02pm
In reply to @snakebite "For me Ojjaara was a game changer. I went from hgb 7- to 12-13, and it..." + (show)
Profile picture for snakebite @snakebite

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.

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Thank you @snakebite81 !

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