What is the Current Standard of Care in Treating Polycythemia Vera (PV)?

Rubin Mesa MD, Serge Verstovsek MD, Richard Silver MD, and Emily Knight R.N., O.C.N. provide their perspectives on the optimal use of cytoreductive therapies for PV. At present, there are no universal guidelines regarding the management of PV. Ruxolitinib was recently approved for PV patients who are resistant, refractory, or intolerant to hydroxyurea (HU).

[@rosemarieducharme9788]

Thank all of you,my oncologist doesn’t feel that my pv is a blood cancer,I’m sure he sees many cancer patients,and doesn’t think PV is important,,but I can testify that this illness has turned my life up side down,I’m on Hydrea now for 2 years,and still have fatigue,vertigo foggy thinking and itching,all on occasion,monthly CBC all within normal range,but as a nurse going on 55 years, I’m very discouraged . So thank you for this !

[@LottieLucid]

Hi Rosmarie, let me know if you find any new info on this, thanks, wishing you well

[@fannyalbi9040]

try nattokinase if it works for you. some use it and see red blood cells lower and maintain

[@wesleyallen1173]

Hi Have them take a look at your iron levels, and thyroid, that is what was causing a lot of my symptoms. Hope that helps.

[@chrisoliver9442]

You guys are so informative ! Anytime I have a question about my disease I watch your videos ! Thank you so much for your feedback 😊

[@syeddshah2710]

Nice sir.thank u for good information

[@justinaunogwu298]

Thank you so much Dr Dagba for curing me of polycythemia vera😭🙏🏼

[@nevillepillay1755]

After 2wks on hydrea I had full mouth ulcers back of my throat Stopped immediately on my oan The nurse didn't even care to you go Over my results Changed the doctor

[@jamesherriott3517]

No mention of Rusfertide. I am hearing good things about it. I am newly diagnosed with PV. Hematocrit started at 69, now at 46 with Hydroxyurea, low dose aspirin and phlebotomy.

[@wesleyallen1173]

Rusfetide is very new; It is currently only in stage 2 testing. This video is over 7 years old. I wish you good look and good heath. Plan on doing a lot of your own study, and learning how to take care of yourself. In the last 2+ years I have found my doctors to be useless.

[@jamesherriott3517]

@@wesleyallen1173 Thanks Wesley !

[@johncorrao2588]

I've got my numbers under control, everyday I have fatigue at around 5pm on.

[@jamesherriott3517]

John...my fatigue is in the evening as well.

[@wesleyallen1173]

@@johncorrao2588 Hi one of the problems I have is iron deficiency, if you have Phlebotomy's done to lower your numbers, you will end up with iron problems. If you take iron it will mean your hematocrit, and red blood cell numbers go up. A vicious circle. This is one of the things that Rusfetide may be very helpful with. I am an athlete, and the iron problem is causing a lot of problems because of weakness, and fatigue. Good luck.

[@johncorrao2588]

Anyone have constipation issues.

[@dorothyhopkins8387]

Yes I use miralax or the generic, also my Dr added colace.