HCT 38 and feeling great

[Wewo01]

Hi All,

I do hope everyone is doing well. I have been having phlebotomies since January with a goal to keep my hematocrit under 42. Last Monday, my HCT was 38.6 and I have felt the best I have in a long time! Better than my HCT's at 41-42. I don't know if this is coincidence or if my body really prefers my HCT below 40? Any thoughts?

Thanks!

Kim

[Manouche]

My HCT is also at 38 at the moment and I do feel pretty good. I did feel great at 36 and not to bad at 67. Hard to say if HCT has an effect on the symptoms!

[MPort]

Hi I keep mine below 39. Usually 38.5! I feel good at this level. If it rises to 40 it spins up to 42 and I have to have venesection. I manage this on .45 Interferon every 10 days. Haven't had venesection for a long while and hope it stays like this. Mairead

[gvibes]

So I am male, 69 yo with PV. So it is interesting question as to the optimum HCT level for each of us - probably an individualized thing. I was 42 last time which is probably the lowest it has ever been - although it is always changing it seems (w/dose of pegasys, phlebotomy, iron levels etc). This is near bottom of normal range with hemoglobin and RBC count as well I feel generally good but noticed some breathlessness when physically active and I started to wonder how low is good and if that is what happens (lack of oxygen to cells maybe). Male's numbers are a little higher, correct? What is the optimum number we seek? With all the doctor interactions I have had in the last year, you would think I would have a target but we have focused mostly on less than 45.

[Wewo01 in reply to gvibes]

I have noticed some breathlessness at 38 but the rest of me feels better. Much less sweating, less flushing of my skin (erythema and erythromelalgia) and no night sweats.

[gvibes]

Yes, a balance. It seems that you have your number. So how stable is your reading and how frequent do you monitor blood?

[Wewo01 in reply to gvibes]

I had a PICC line placement in mid January because my veins are so small and difficult to hit, so I have to have weekly visits to check my blood counts and change the bandage.

[gvibes]

So you know your levels. I have monthly CBC and I worry that concentrations change pretty fast. I am about a year into pegasys and not really stable yet I believe. I read people with quarterly monitoring and, at least for me, that would not seem to be enough.

[Wewo01]

I am finding that my hematocrit takes about 2-3 weeks to exceed 42 and require phlebotomy. But now that I am at 38 I want to keep it there.

[Wewo01 in reply to Wewo01]

Currently, I am only on aspirin twice a day. My Dr is filling out non-formulary paperwork for Besremi. Hope to be approved and start in April.

[Meatloaf9 in reply to Wewo01]

I think that this shows that we are all really different. I am 72 PV and have been taking HU since last July. Currently Hct runs 42-43, when my Hct was running between 45 and 50 I felt much better, not that I feel bad now, just better when it was higher. It did hit 55 one time and I did not feel great at that time. Maybe I felt better between 45 and 50 because I was not taking HU at that time only aspirin. Anyway, I am glad you have found the best level to keep you feeling great. Good luck with the besremi, please keep everyone informed as to how it works for you. Best always.

[hunter5582]

Glad to hear you are feeling better. Feeling better is a good thing and on of the most important MPN treatment goals. Treatment for PV is always a balancing act. The balance is different for each of us. Reducing HCT reduces hyperviscocity which can reduce hypertension and other issues.

Wishing you well and continued improvement in quality of life.