A Conversation with an MPN Specialist: Blood Count Targets in PV

MPN Advocacy & Education International hosted a webinar with Dr. Brandi Reeves, UNC School of Medicine, to discuss and answer questions about blood count targets in polycythemia vera (PV).

TIMESTAMPS
00:00 A Conversation with an MPN Specialist: Blood Count Targets in PV
57:15 Can you discuss neuropathy and treatment options?
59:32 If you cannot take BESREMi at higher doses due to liver enzymes, is there a difference in outcomes in reducing JAK2 between pegasys and BESREMi?

[clemqueens]

My PV has recently progressed to MF but I wanted to address what Ann said about a patient taking a regiment of antibiotics and found it reduced inflammation. This happened with me also. Before I was diagnosed, I suffered with migraines and periodic sinus infections. My PCP would put me on antibiotics when I had a migraine and the migraines subsided. I believe I was having migraines due to the PV inflammation …as I looked back at my labs, Platelets were elevated at the time… prior to the PV diagnosis.

[alfagrim]

Hello. Regarding migraines and PV, there is definitely a connection. I struggled with frequent migraine attacks for seven years (2009-2016). During some periods, I had them several times a week. I often experienced visual disturbances before the attacks. Some attacks were very severe, and I lost the ability to speak and became confused. During the most severe attack, I fainted and woke up in an ambulance with short-term memory loss. In 2016, I was diagnosed with PV at age 30 and started phlebotomy treatments. After that, the migraine attacks disappeared as well.

[jenniferfuertes]

I'm thrilled to hear your perspective on counts not being an end all. My Onco says nothing is wrong with me cuz I'm not off the charts - that it's just inflammation. But i feel like crap, my kidneys randomly bleed, migraines and well, all the things. He is fixated on thalessemia just cuz my reds are shaped weird, are small & pale. He denies any other possible reason for the abnormality.

[clemqueens]

A phlebotomy sure takes the pressure off with elevated Hematocrit. Made me instantly feel better.

[usneod]

Can you please breakdown what an Allis Burden means in terms that a non -medical person can understand? My Burden was 3, I have PV and Jak2 positive. Thank you..

[anhnguyenghet]

Very informative, thank you. I am a 67 year old woman who was born with only one kidney I was just diagnosed with PV and had a previous minor blood clot in lower abdomen 7 year ago. What are the key PV treatments is best given my unique situation? To protect the only kidney I have, transplant surgery is highly risky because of clot or other reason.
Thank you so much and hope to hear your thought.

[jenniferfuertes]

How do I find a specialist near me? I'm in New Mexico and docs here seem to be clueless about MPN' much less anything related. I have SO many questions!