Venesection/ Increase HU

[Fionnuaghla]

Since my PV diagnosis 2 years+ ago, I have been having venesections at every 8 weekly hospital visit as my level is always over the magic no of 450. My iron levels are in single figures and I posted re my GP advice on here recently. At my hospital visit last week, armed with my printout from the surgery, my HU which I was taking at 500mg X 5 days has been increased to 7 days. I have been very tired since, probably due to further depletion of iron after the venesection and increased HU. I know that my dosage is not high compared to other posts. I am wondering if anyone has had a similar experience and if the increase in medication resulted in fewer venesections. I have been trying to motivate myself out of this tiredness but having to admit my energy level is low. Zzzzzzzzzzzzzzzzz, yawn. Just wondering if anyone felt low after an increase in HU. I am hopeful that it will all balance out.

[Johnsb]

Hey there!

I have been diagnosed with pv for about a year. HU 7 days a week, aspirin, and venesection about every 6 weeks. Which is down from 2x a week.

My iron is low like yours.

Previously I tried to guess what my body would do after an increase in drugs or venesection. But I've learned over this last year that it's different every time. There were days when it's completely wiped out for no good reason holidays when I had plenty of energy.

What works for me is a schedule of early to bed early to rise. I work to stay hydrated and eat more less sensibly.

And on days when I'm worn out I just accept it relax rest and trust that tomorrow will be better. Cuz there have been days when I've gone to bed at 6 p.m. and not gotten up until next morning at 8 or 9. But I find I'm much better for much longer if I do that.

Good luck to you and stay involved with others.

John