Currently 6 weeks in of having 400ml of blood taken and one Aspirin a day. The trends for my red blood cell count has gradually been going down (the desired level is 0.45 apparently) it has gone down to 0.51 last week and this week has started going back up to 0.53. Some other levels have also gone up.
Has anyone else had this & should I be concerned?
Pete
Hi PeterGadsby,
Try not to worry too much our levels do fluctuate, but I’m not qualified (and neither is anyone else on here except the specialist staff) so ask your medical team. I do know finding the right medication can take time and many of us are on other medication as well as aspirin, aspirin as I understand it took five months for me to find (well my doctor to be accurate) the right medication that works for me, and then it took time/is taking time to work completely though my levels have been under 45 consistently for almost a year. I tend to range between 38-42 normally. But you will get there hang in and ask your doctor if you have concerns.
Take care, Pedro
Thanks Pedro, I will ask my care team (I did ask the nurse who did the phlebotomy, but she didn’t seem to know).
It was just a bit of a shock that the levels started going up when the trend was seemingly going down.
Thanks very much for replying & giving some insight into your time with Polycythaemia vera (PV).
Best Regards
Pete
Hello there @PeterGadsby, just wanted to say that I’d be happy with those haematocrit levels as they’re pretty close to normal for those without Polycythaemia vera (PV).
Like dear @Pedro kindly shared, I’d also say try not to worry as our various blood cell numbers do change. Even just eating a lot of iron-rich food in the week prior to blood tests can bump our haematocrit up above 45 %, as mine did this month, annoyingly. Wow Pedro, I’ve never had my haematocrit in the 30s, what’s your trick?! So glad yours is lower and less risky.
Having blood tests done week to week can show such variables, but it tends to settle down a little over time and become more predictable. After a couple of years of treatment my haematocrit creeps up to being a little too high every 4-5 months, and then phlebotomy brings it down again.
Personally I’d rather have occasional phlebotomy with my current dosage of hydroxyurea than take a higher dose of hydroxyurea with no phlebotomy. Something about simply having blood removed is preferable for me than more potential reactions to a stronger dose of chemotherapy, but I understand we all have different responses to our treatments as we all have such unique health histories.
Thanks Duncan, at the moment i am having a test weekly and then a phlebotomy this is going to be on going at least until November. What peaked my concern was that up to now the trajectory was downward, thanks for reassuring me that this can happen and likely nothing to worry about.
Pete