polycythemia vera
I was diagnosed with PV 9 months ago and am trying to get up to speed. Just discovered myMPNteam. I’m curious for those that have been dealing with this for longer, at what point is drug therapy recommended? My doctor said it was preferable to do phlebotymys to keep HCT below 45, 40 even better. But as I read some of the stories here I see many people on drug therapy. Appreciate any wisdom
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
Update: Now that my hematocrit runs about 45% and I am taking a tiny amount (19 mg.) of Wellbutrin, my brain is functioning again. I just finished my fourth year of law school with a 3.8 GPA for the… read more
I started monthly phlebotomy for polycythemia just last spring. My physician initially prescribed sessions when my hematocrit is > 52. I argued against such a high hematocrit requirement. So, last month she dropped it to 45%, meaning I can have them whenever my hematocrit is > 45%.
What are your hematocrit boundaries for phlebotomy? Any advice?
mine goes up so fast, so I have 3 a month to keep it at 43-44, when it goes up I am miserable! the prickly heat is it!! wow!
Feeling that TMB (too-much-blood) feeling only my fellow MPN friends would understand.
Hi TG at first I had a few blood lets then it got less and less until it stopped all together with Besremi
Can’t remember exactly as I have been on it for 2 years recently and in 2019 I started the… read more
I found out I have hypothyroidism, I had a hysterectomy in November. It is not as bad as last year, but continues to happen. Was hoping someone can provide some guideance.
Regarding thyroid: I've been treated for Hashimoto's thyroiditis for 40 years. 100 mcg of Synthroid has kept my thyroid level normal, ever since the correct dosage was found. Also: Does… read more
I am fully vaccinated: pneumonia vaccine, flu shot, and all six covid vaccines ... without issue.
I take testosterone but it truly is a problem. I must watch my hematocrit very closely and take aspirin daily.
Note, however, that my body does not produce ANY testosterone at all, so I really do not… read more
Yes, I definitely have memory issues!! I'm afraid it's from the ET itself or the HU. I feel so self-conscious when I'm talking to someone + I forget a word or 2, or even forget what I'm talking… read more