Fluctuating haematocrit

[Strider52]

Just a query re the stabilising of haematocrit via Hydroxyurea medication for PV. How difficult has it been to settle into the optimum pattern? My wife has been on chemo tablets now for about 5 weeks after having had venesections discontinued. She had a prolapse operation on 10th March, so took an advisory further venesection pre-op. All apparently went well in the op so she is still in the recovery phase waiting for internal stitches to dissolve. Her haematocrit which had been steady around .45 is now fluctuating back upward. Is this normal in these circumstances?

[Meatloaf9]

Hi, I think what she is experiencing is fairly normal with PV. My Hct dropped for 6 months after starting HU and then started back up. I was told to take one additional capsule per week (9) and it went back down. That was 2 wks ago, next test in two weeks. My specialist wants to control the PV with HU, he says adding phlebotomies causes a lot of variation in test results and is hard to determine which is working, the HU or the phlebotomy. My Hct went from 55 to 40 in 6 months then 45.7 two months later, then added one capsule per week and it went back to 42.7 after one month. I decided to take 8 one week and 9 the next week and see what happens. Did not tell my doc. This is not advice, just my experience. Always consulting with you hematologist is best. Best to you.

[Strider52 in reply to Meatloaf9]

Thanks for that. I know it's early days yet so hopefully it will settle in due course..My wife is on 9 tablets per week at the moment. 👍

[Meatloaf9 in reply to Strider52]

5 weeks is very early, I agree with you. Things will probably settle in within a few months. Hope she tolerates the HU well, I have not had any problems at all with it thus far, my highest dose was 2 caps per day. Most people on this site have said they feel better with a lower hematocrit. Over the last year since I became PV I always feel better when my Hct is between 45 and 50. For the 4 years I was told I had ET my Hct was always between 46 and 50, I felt great then. Not quite as good now but still good, may have something to do with age, now 72.

[Strider52]

My wife is unfortunately, a tad impatient…..I’m her voice of reason (I hope) 😄👍

[hunter5582]

The answer is that it varies by person. Some of us respond well to venesection-only. Others do not. The same with HU. Some can achieve stable HCT with it. Others find it inadequate at tolerable doses. HU did not work for me and I could not tolerate the adverse effects. I tried venesection-only, but after a couple of years the adverse effects of the iron deficiency were worse than the PV symptoms. I went on Pegasys (then switched to Besremi). This has worked far better for me so far. Easier to tolerate and more effective. That, however, is how I have responded. We are not all the same and we each respond differently.

I hope you wife finds the best approach for herself soon.

[Strider52 in reply to hunter5582]

Thanks for that 👍