Quick Links
About myMPNteam
Powered By
Yes, my multiple doctors tell me to get all possible immunizations.
Yes, Bert! That is my understanding.
Besremi increased to 175mcg on 11/22/23. As of 12/15, HCT is basically stable at 45.4% following two increased doses of Besremi 175mcg. HGB is stable at 14.7. PLT is down to 235, the lowest it has ever been but not a concern. NEUT down from 1.23 on 11/13 to 1.05 on 12/15, the lowest it has ever been, which is a concern. The cutoff for too much compromise to NEUT is 1.00. LYMPH at 0.61 on 12/15 is in the range it has been for some time. The cutoff for too much compromise to LYMPH is 0.50… read more
As usual, Steve, your post is very informative. Glad you are doing well on Besremi. I, too, am doing well on Besremi. My numbers appear to be stabilizing. So both of my hematologists have recommended… read more
I'm curious about people's use of various meds for PV, when they've transitioned to a different medication, and what they transitioned to. I'm currently on 1000 mg of Hydroxyurea and phlebotomies, am very iron deficient, and miserable (fatigue, nausea, headaches, itching, and night sweats).
Rest when you need too, no one likes fatigue but we are all human!😜
I was diagnosed with Polycythemia Vera in Jan 2024.
I receive disability for multiple conditions
Hi All,
I am a 62 y/o law student. Over the last nine months or so, ever since my polycythemia diagnosis, I have noticed trouble recognizing, remembering, and naming other law students on my campus. These are people I feel I should know. I wonder whether my blood-sludge is decreasing oxygen transport to my brain. I worry that this problem will get worse and affect my capacity for critical analytical thinking.
Online reading has not indicated polycythemia as a reason for such memory trouble… read more
Thank you, Tatiana. Very helpful information! It's good to know I am not alone here. I will follow your research links.
Is there someone in the group that you can use as your mediary and get the word to the group before the dinner that due to your disease, you are embarrassed to say that it is necessary for you to lie… read more
