My mom has PV

PV ?????????

Sorry - Polycythemia Vera

I remember the panic amongst my loved ones when I was diagnosed in 2022 with PV. Both HCT and platelets were high/very high, but I only did a few phlebotomies before stating medication (Besemi) in 2023. The blood letting did not feel bad, but I wanted a chance to alter the mutations that cause the blood production to malfunction. My medicine caused raised liver enzymes early on and I took a break from the interferon. Then I went back on at a much lower dose. Now I am on the lowest possible dose, injecting only once a month. Either the disease or the meds knock me out sometimes. I have a lot of insomnia and fatigue, and sometimes other side effects. But the medicines are working well at lower dose for the time being. As nightmarish as it is, we have to accept the trial and error method, while always questioning and being honest about quality of life issues. Best of luck to your family.

Thank you
I think you are right - a bit of trial and error to find the balance.

My experience has been that it can be managed just by medication (HU) after some intense phlebotomies. In my case, I initially did monthly blood tests and if they came back above a certain range I would get a phlebotomy. Now we are using the same blood testing process but just adjusting the dosage if the numbers exceed a certain range.
It will become easier for your mom once she gets used to it.

Hey, I’m 58 and this Jan will be two years since my diagnosis. It was scary. It takes about 7-8 months to get the dosage correct and they always begin with hydroxyurea because it has been around since the 1960’s. It doesn’t harm your organs. One baby aspirin also. I began with phlebotomies every week for six weeks and now am getting them about every ten weeks. I started taking the meds seven days a week and felt like crap. Tooth aches, high sensitivity to sun and just tired. I was told to hang on and let my body adjust. I did. Slowly I was reduced to five days a week after platelets dropped drastically. At about seven months I went to 3X a week and have been doing great at that dosage for almost a year and a half. My platelets began over
800 -now I stay between 450-490 which is acceptable. I get a phlebotomy once my hematocrit is 45 or higher which currently is about every 10 weeks. It’s a scary thing but can be managed and you can live for decades if you stay on top of it. Moral support is important. I wish your mom luck.

Thanks for sharing your story. My mom’s platelets are in range, which is different than some of the comments from others. One day at a time …

Thanks for commenting
How often did you phlebotomy before things balanced out with the meds ?

I started out having a phlebotomy every two weeks regardless of the numbers. This lasted about two months. Then we started doing them only when my hemoglobin hit or exceeded 17.0 . This lasted about a year and I only had 3 or 4 during that time. Since my numbers have stabilized pretty well, my doc said that he would let me know if he thought I should get one. Now the number that drives my dosage amount is my platelets count. That one seems to be the most volatile of the numbers that my doc keeps his eye on.

Hi:
It's a mixed bag of views. Some say phlebotomies can manage PV, but most don't believe that it's the best route for everyone.

When on Hydrea, your numbers can jump around the first 6 months or so until the body regulates and becomes accustomed to it. Your mom is only on 500 mg. 3X per week, so that would lead me to believe that they caught her PV relatively early.

I, too, am newly diagnosed in early October. The doctor put me on 500 mg. every day and my numbers are down to normal ranges (platelets and hematocrit, as well as hemoglobin dropped back to normal ranges).

Again, every case is different, but your mom should discuss the upside and downside of phlebotomy ONLY and let the doctor guide her.

500 mgs. of Hydrea a day is nothing. Just keep well-hydrated; Remember to put a mouthful of water in the mouth and then drop the capsule into the mouth and swallow water and capsule together quickly (this will cut down on sores in the mouth) and exercise daily and eat well. Good luck to you and your Mom.