After three Phlebotomies, I went from 720 down to 410 on platelets and 50 down to 37 on Hematocrit.
I no longer have to do phlebotomy.
Polycythemia Vera is a rare type of blood cancer that causes your bone marrow to make excess red blood cells. Because so many RBC are being made, many of them are odd shapes and sizes and the proliferation of them causes oxygen to the cells to be compromised.
Many people who have PV have bone marrow scarring. Fortunately, my bone biopsy revealed that my bone marrow has not been compromised.
I currently take 500 mg. per day of Hydrea, but because my iron levels are so very low, they may increase my dosage to taking an extra 500 on M/W/F each week to try and balance out the iron levels. Taking iron pills is not an option because it will signal for more of the blood cells I don't need to manufactured.
I have had no side effects after nearly 6 weeks.
Please take your Hydrea this way to avoid sores in the mouth and on your tongue. Someone told me that this trick works: Put a mouthful of water in your mouth before you slip the capsule from the prescription bottle cap into the back of your throat and swallow the water and pill immediately.
By putting the capsule in your mouth without water in it first, it touches the tongue and the inside of the mouth and can cause sores and ulcerations. My tongue began to sting and get so sore after the first 10 days. I went on this helpful support group thread and got this recommendation from a woman who told me how to take the pill. So grateful for the suggestion.
You will probably need to get a CBC w/Diff every two weeks so your doctor can assess how well the phlebotomies and the Hydrea are working. So far, no hair falling out, and no sores in the mouth.
Good luck and feel free to ask questions. Always check with your doctor if you want to do something you read about on this site.
Thank you so much. I figured out the acronym for PV. Feeling a tad overwhelmed due to the diag. of Essential Thrombocytosis (ET), which is different than PV, yet similarly treated. The potential side affects associated with Hydroxyurea is my concern, therefore I'm trying natural remedies for 6 months, and getting labs q 2 mo.. My platelets have been stable around 600, and RBC and Hgb are normal. I'll revisit Hydroxyurea after my next exam in Dec. Thanks again🦋