My husband has started taking Vonjo, has anyone taken Vonjo?
My husband has myelofibrosis. Was taking Vidaza it worked for a while. His Doctor started him on Vonjo, does anyone have experience with Vonjo.
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Hi @dax1million. While waiting for others to pop into the conversation with their experiences taking Vonjo, I did find a few references to conversations with members.
This one caught my attention first with @lschmeit @snakebite
~ VonJo (pacritinib) effects ... Has anyone taken Vonjo (pacritinib
https://connect.mayoclinic.org/discussion/vonjo-pacritinib-effects/
Here’s the complete list from the search: https://connect.mayoclinic.org/search/?search=Vonjo&pg=4
How has your husband been feeling now that he’s started the Vonjo? Any side effects that you’re aware of?
@ dax1million
Prior to my successful AlloSCT, I was prescribed Vonjo to treat my severe anemia resulting from secondary ET myelofibrosis. I had probably 20 blood transfusions in the prior 18 months in order to keep my hemoglobin above a baseline of 7.0. After about 5 weeks, the Vonjo had not increased my hemoglobin counts, and I was switched to momelotinib (Ojjaara). While I expected some side effects from the Vonjo, I had none. The switch to OJjaara did result in raising my hemoglobin counts and greatly reduced the frequency of needed blood transfusions, and I had no side effects. However, I was in an advanced stage of fibrosis, and soon had the transplant. What I have heard from my doctors and read, neither of these drugs work for everyone. Hopefully, your husband will respond favorably to the Vonjo, but, if not, OJjaara is still an option. And, there are several new treatments in clinical trials.
@loribmt Thank you so very much for your reply, you are a blessing to this website. No, he has had no side effects from the Vonjo. Unfortunately no respond to the low platelets, he had his 73rd infusion yesterday. I just keep praying there will be a change, he is starting the fourth week. Thanks again for the connection to others. Your help is so encouraging that we are not in this alone.