My bloods have been good for some time, but, they reduced my interferon to 90 and the HCT went up over the target 0.45, for three quarters, not by much, 0.47, 0.46, 0.47. Today they are still at 0.47, so I am having to go for a venesection, 1st in nearly 3 years.
The good news is my allele burden results are back at 1.62% down from last time... So sort of good and not so good news..
The consultant suggested that I didn't drink enough water on the day of the blood test..
Good news on reducing AB!
The slightly elevated HCT could indeed be caused by dehydration. I usually try to hydrate well, but slacked off for a couple of days before a blood draw. Sure enough, my HCT went up slightly and I believe dehydration was the cause. I'm determined not to make that mistake again since phlebotomies are no fun.
Best wishes.
That's all good news IMHO. Nothing alarming about having a few widely spaced phlebotomies every year. What counts is low Jak2 allele burden, normal LDH and normal WBC & Platelets.
An HCT of 47 is normal and OK for a patient without PV, so maybe it's also OK for a PV patient like you that successfully eliminated 98% of their Jak2 tumor burden with interferon.
if we are Jak positive we still are higher risk than non Jak people, Dr Silver has stated even if Jak is extremely low and in remission there can still be plenty MPN in the bone marrow. I had a consult recently with an expert and I said all my counts are normal does that mean I don’t need to be so concerned re thrombotic issues. He said if Jak Pos positive the risk remains. He said people who are Jak positive who do not have MPN are high risk thrombotically just like us.
if it was me I would keep Hct under 45 always, we do dehydrate overnight, but my view is even although a bit dehydrated Hct should still be under 45, that may mean you are 43/44 when fully hydrated but it’s safer. For sure if you test at 9 am after rising it will show higher than if you test at noon. I try to test same time of day eg noon , if it’s an early test I get up 2 hours before and drink a half pint of water. Good your Jak 2 is down and I suspect low is good but your Hct indicates your bone marrow is pretty active. Still looks good though.
I had the same problem two years ago. 90mcg was too low. So I had to up the dose to 135mcg for a couple of years. Then it became a bit too high and 112mcg was just perfect since last August. I’m back to 90mcg since last week to see how it goes with a jak2 at around 2%.
Why be so obsessed by blood readings that look more like rounding errors.?
Good news re allele burden
Test Results - good news for now
Peg Update - Good News
