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A myMPNteam Member asked a question 💭
Pittsburgh, PA

I have secondary Myleofibrosis I am soon going to be taking a clinical trial medication Pacritinib. My spleen takes up half of my torso very enlarged and my blood counts are all over the place. Has anyone else taking this or taking now? Did it help you? Any side affects?

January 13, 2022
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Answer Summary

Members discussed their experiences with medications for myelofibrosis, particularly Jakafi and the newer clinical trial drug Pacritinib,... Read more

Members discussed their experiences with medications for myelofibrosis, particularly Jakafi and the newer clinical trial drug Pacritinib, which is designed for patients with low platelets or who haven't responded well to other treatments. Several members shared that Jakafi had worked well for them despite causing low stamina and anemia, though one member noted it caused their platelets to drop dangerously low, prompting a switch to Pacritinib. One member reported remarkable success after eight weeks on Pacritinib, with blood levels stabilizing, liver enzymes normalizing, spleen size decreasing significantly, and platelets rising from critically low to 145, delaying the need for a stem cell transplant and offering hope to others considering the medication.

A myMPNteam Member

Yes hi there Rspriggle I sent in a question to my mdanderson dr about Pacritinib see what he says. My platelets are around 35 or lower. Maybe when I see him in May they’ll be even more info out there. Stay warm and happy Friday to you and all

January 21, 2022
A myMPNteam Member

I have not, but I have heard really great things about Pacritinib in several ASH talks online. Best of luck to you!😊

January 20, 2022
A myMPNteam Member

I was diagnosed with MF and put on Jakafi after a short unsuccessful trail with chemo. So far life has been good. the only problem is lack of stamina because of low red blood count. I will take this.

January 16, 2022
A myMPNteam Member

In regard to Pacritinib from the original question, I don’t know much about it other than what I’ve read. It is a JAK inhibitor that seems to be promising for people who are intolerant or resistant to Ruxolitinib (Jakafi) or with low platelets. Also, I believe it is close to FDA approval.

January 15, 2022
A myMPNteam Member

I have been on Pacritinib for about eight weeks now. I saw my doctor yesterday and he said I am doing great. Before starting the program and he said I was a very sick woman. My blood levels are regulating to where they should be and some of my liver enzymes are normal and my huge enlarged spleen has decreased significantly! My platelets are up to 145 now! They are the highest they’ve been in a long time thank goodness! Stem cell transplant still in the future but not anytime soon. Don’t be afraid to go on Pacritinib if prescribed by your doctor. I am so much better on this medication than when I was on the Jakafi! Feeling so much better. Have a great day everyone!

May 10, 2022

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