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

[@jenniferfuertes2668]

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.

[@clemqueens1943]

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.

[@Lemkopride]

Which antibiotics were you prescribed that reduced the inflammation?

[@clemqueens1943]

I’m sorry I can’t recall but if I had to guess it was Bactrim. I am allergic to Penicillin.

[@usneod9329]

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..

[@alfagrim2065]

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.

[@maivezonk]

This was so helpful, thank you!

[@anhnguyenghet9093]

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.

[@mpnadvocacyeducationintern5167]

I recommend speaking with your hematologist or MPN Specialist if you see one. They would be the best at providing you with treatment options based on your lifestyle and numbers. Thank you for watching!

[@clemqueens1943]

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

[@lisamelisa7719]

They will deplete your iron if you need them frequently

[@andys9678]

[@jenniferfuertes2668]

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!

[@mpnadvocacyeducationintern5167]

We are sorry you are having difficulty finding a specialist in your area. Perhaps one of these doctors may be able to help? Dr Elizabeth McGuire at the University of New Mexico, Dr. Timothy Lopez in Santa Fe, or Dr. Roscoe Morton in Santa Fe.

[@JiveDadson]

Platelets 27:15