PV and fatigue

Blood thinner I'm sorry eloquis works wonders for the blood

The first year after diagnosis, my doc was using my hematocrit #’s to determine phlebotomy frequency and med dosage. Switched to using hemoglobin because my WBC and platelet #’s also run high and I understand that can affect your hematocrit readings. I’m guessing too high a hydroxyurea dosage can knock your platelet levels too low. I don’t mind the monthly blood tests because I have a lab right close to my home. And my treatment center has a very cool reporting system that I can access from my PC .It gives interesting graphs and charts that I can use to track my progress.

Interesting! My platelets and white cells run high also. Actually, the platelet count is what determines if he adjusts the dosage. Yes, I agree monthly labs are fine and keeps us on top of things. I too have a “my chart” on line so I see results by end of the day at home. It’s very informational. Sounds like we are in very similar situations.

Whether your doctor follows your hemoglobin or your hematocrit shouldn’t matter. As a retired medical technologist, we were taught to use one to double check the other. The hematocrit should be 3x the hemoglobin. My hemoglobin is 12 and my hematocrit is 36. The only thing that might affect this is if your red cells are very large, as immature red cells can be.

I was diagnosed in April, got total relief from the crashing headaches after my first 2-3 blood draws. Now I'm down to maybe 12 hemoglobin, could be little lower and I'm likely in an anemic state now which causes fatigue. When I go next week I don't want a blood draw but I'm going to ask for a Saline infusion to help me feel less fatigued. I've had about 5 pints taken in less than 2 months. HemoOnc doc wanted to bring me down to 11, I know now this is not a good number for me. Once I find the right number to feel better and less fatigue they think it might only be 2-3 blood draws a year, easy peasy as my grandson says. I'm on no meds other than low dose aspirin and my 10mg statin which I've been on for a few years now, hereditary cholesterol.

If your hemoglobin is 18 or higher I would ask for a couple therapeutic phlebotomies, I call them blood draws (or Vampire Visits 😉). My regular GP wrote the initial script for me to get that going while I waited for an appt with an oncologist. My GP is an MDVIP doc (concierge) and an excellent diagnostician. I did not like the 1st HemoOnc doc at all, arrogant and said I don't think you have PV which caused me even more delay. My next HemoOnc doc was/is wonderful, love their NP (she's teaching me how to read and interpret my numbers) and their infusion center, they're all my buddies now. Helps to make friends in those areas.
Best of luck, this Forum has been a game changer and I feel God has a plan for me and it's to help others with this disease once i have it under control.

We can all live a nice long and quality life with PV as long as we listen to our bodies, take excellent care of outselvee and line ourselves up with the right docs. Drink TONS of water, one of the most important things you can do. Dehydration makes your hemoglobin go up.

It takes a village 💪 ❤️

Yes I'm taking Jackifi I've had pv for over 10 years

Make sure you are taking a blood thinner I am on eliquis and it has helped me tremendously to keep my blood thin. I was on hydroxaurea, but I had to switch to Jakafi to get my blood to slow down

I might see if I need to come in and have a vampire visit LOL. I have never had one before. I guess that's a good thing if he thought I needed one he probably would have told me to come in and sit down so he can take my blood LOL. One thing I will say that has helped me he is being on a blood thinner, I did experience a blood clot between my heart and lung about killed me but God is good I made it through I give him the glory and the praise. Keep up the good attitude it's nice to see somebody having a good personality while experience some of the things we have to go through we will make it through the grace of God Amen.

Amen to that!
My HemoOnc doc put me on low dose aspirin first, but I didn't throw a clot so I can see why you went right to a blood thinner. BTW, the NP taught me they aren't blood thinners like we think, they're anticoagulants but it was decided that would be too hard for people to relate to and understand so they all call them blood thinners. I thought that was interesting. I'm certainly learning a lot, I'm a sponge for knowledge. Especially when it comes to my health. I am looking forward to seeing multiple great grands come into my life 🙏 ❤️

Yeah just trying to say the word anticouglant makes my brain hurt 🤕