Update EPO???

[shiftzz]

Had my 1/4ly consultation.

My HCT has been hovering above 0.45 for about a year, see above.

My JAK2 test has come back negative, after being positive for some years but at a low percentage.

They have decided that my interferon to be changed from 10 days to 14 days, it was originally 7 days.

They conform that I still have PV but dont u8nderstand why my HCT is still over 0.45 the target they set.

So they are looking for another secondary case for the 'high' hct and I am due to get an EPO test in about two months or so.

They think it could be related to something else...

At the start of my journey my HCT was 0.614. OUCH!! Platelets 1143.. All test have been stable for around 5 years,

[EPguy]

Is that green line 45?

Have you been tested for any other MPN non-driver mutations?

I've had regular EPO tests, lately it's been well over max. This is most often from secondary polycythemia but that doesn't fit me or likely most of us. But if your EPO is high that could be a place to look.

Are you feeling better lately?

[shiftzz in reply to EPguy]

I'm doing OK, sleeping better, but still tired, brain fog not much better.

You?

[EPguy in reply to shiftzz]

I'm in a not-horrible state for over a month, a very big improvement. It's possible some of my problem was vitamin B6 toxicity, some pts can accumulate way excess on just mild doses. B6 is lurking everywhere. Hoping for not-horrible to stick around, Sjo can take turns any time.

Is it possible you have complications of Long Covid?

[shiftzz in reply to EPguy]

Green line 0.45.. yes