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Medication For Myleofibrosis
Is anyone on Pacritinib also known as Vonjo? For Myleofibrosis?😊
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
Is Their Anyone Out There Using The Drug OJJAARA Or MOMELOTINIB? Would Like To Talk With You. Thank You, Paul
Hi Donna8. I had pretty severe shortness of breath and pretty bad water retention. I was so happy to get off of it and almost stopped on my own.
Why Am I So Tired All The Time.
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??
Is Anyone On Vonjo?
My platelets are 28,000. Currently not on any meds. My specialist is suggesting vonjo. What side effects if any? Thanks in advance
Has Anyone Else Noticed Significant Weight Gain From Taking Pacritinib/Vonjo?
I have gained 12 pounds plus since on Pacritinib/Vonjo. On it since February 2022😕
Anyone On Here With Myelofibrosis Having Low Plalets{146
My platelets at last blood test 28,000. Debating going on vonjo.
Have Mild MDS & ITP, & Some Fibrosis In Bone Marrow.Platelets Managed Weekly W/NPLATE Injection, Itching With Water Contact And Raynaud's
Is this common? Help with Itching. I am taking VONJO a pacrinitib for this which helps somewhat, but not overall. Any suggestions
Pat
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?
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
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,
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
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