Vonjo and myeloproliferative neoplasms | myMPNteam

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Is Anyone On Vonjo?
A myMPNteam Member asked a question 💭

My platelets are 28,000. Currently not on any meds. My specialist is suggesting vonjo. What side effects if any? Thanks in advance

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Why Am I So Tired All The Time.
A myMPNteam Member asked a question 💭

Hi,63 , diagnosed with PV 10 years ago. Extreme exhaustion always. phlebs and aspirin only. Counts not too far out of range. Daily routine includes yoga and walking, nutritionsupplements. Trying to eat healthy always but no appetite.
Why so tired??

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A myMPNteam Member

Was diagnosed with Myelofibrosis several years ago and went from Jakafi to Vonjo and now Ojjarra which for me had less side effects. My main problem aside from an enlarging spleen was constant anemia… read more

Has Anyone Else Noticed Significant Weight Gain From Taking Pacritinib/Vonjo?
A myMPNteam Member asked a question 💭
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A myMPNteam Member

I have gained 12 pounds plus since on Pacritinib/Vonjo. On it since February 2022😕

Anyone On Here With Myelofibrosis Having Low Plalets{146
A myMPNteam Member asked a question 💭
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A myMPNteam Member

My platelets at last blood test 28,000. Debating going on vonjo.

Medication For Myleofibrosis
A myMPNteam Member asked a question 💭

Is anyone on Pacritinib also known as Vonjo? For Myleofibrosis?😊

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A myMPNteam Member

My new Dr is a specialist too and she
Wants me to take Besremi. It’s an injection and
Very expensive.!! Waiting to see if
I can get
More financial hep. Don’t know what
To do
Otherwise

Have Mild MDS & ITP, & Some Fibrosis In Bone Marrow.Platelets Managed Weekly W/NPLATE Injection, Itching With Water Contact And Raynaud's
A myMPNteam Member asked a question 💭

Is this common? Help with Itching. I am taking VONJO a pacrinitib for this which helps somewhat, but not overall. Any suggestions
Pat

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Itching and MPNs: How to Manage Itchy Skin Read Article...
A myMPNteam Member

That was great information from Tta, thank you. I am fairly new to ET, being diagnosed a couple years ago. I have described my bone pain as aching from the insides of my bones (legs and arms) To me I… read more

What Treatments Have You Done That Have Shrunk Your Spleen?
A myMPNteam Member asked a question 💭
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A myMPNteam Member

Hi Carl
I was on Jakafi for close to 2 years. I got off because I felt it might be causing some brain damage and/or PML. Had a brain MRI but as there was no base to compare the MRI results to,… read more

Myelofibrosis Specialist Referral OHSU Portland, OR
A myMPNteam Member asked a question 💭

Looking for a MF specialist in the Treatment department of OHSU. Apparently, Transplant is a different department than Treatment.
My platelets are at 33...very low. And with low Hemoglobin constantly in the 6.6 to 8 range (w/transfusions every 3-4 weeks), ...I need help!
Now that Momeletinib is FDA approved, another option available. Can Pacritinib(Vonjo) be taken with Momeletinib?
Appreciate any feedback,

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A myMPNteam Member

Hi Jim, I'm being treated for PMF at OHSU also. They have great staff. My specialist is Dr. Saultz who is quite good. And you are right about the different departments and actually there are 3 that… read more