← Return to Myelofibrosis: Anyone have experience with Vonjo (pacritinib)?

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Profile picture for cindyem @cindyem

I posted a year ago about seeing a specialist in Myelofibrosis at Mayo Clinic. Dr. Tefferi put my on a half dose of Ojjarra to make sure I could tolerate it. My platelets were very high as was my WBCs and I was anemic. I had an enlarged spleen. The Ojjarra brought down the spleen size and stabilized my platelets and WBCs and anemia. They were still in the abnormal range but improved.
My annual visit to Mayo Clinic was uplifting for I am still not feeling any effects of the Myelofibrosis or medication. Dr. T decided to increase the medication to the full dose. It's been three weeks and my new tests reveal that everything in my CBC is totally in the normal range for the first time in four years. My biggest relief was seeing my platelets come down as my risk for clots was high.
I hope that gives you some hope for improvement.

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Replies to "I posted a year ago about seeing a specialist in Myelofibrosis at Mayo Clinic. Dr. Tefferi..."

@cindyem Cindy, thank you for your information, it is wonderful that’s it’s working for you. My husband is on Vonjo which is supposed to help with low platelets but so far staying the same. From what I read about Ojjarra it could make platelets go lower. I keep praying there is something that will help. Thanks again for taking the time to send encouragement. God bless !