MF and natural epo levels.

[jointpain]

Does anyone with MF get tested routinely for their natural epo levels? We have asked to have my wife's epo level checked at her next blood test opportunity, mainly due to her poor Hgb a sudden rise in platelets and that she has only one working kidney left, and no spleen.

[EPguy]

I've been getting EPO checked every MPN visit as it has been rising above normal. My Dr has no idea what's up. My kidneys are ok. I suspect my autoimmune disease has some connection but I can't find any info.

I'm PV, low MPN symptom and mutation, very hi auto immune Symptom.

[jointpain in reply to EPguy]

It's good that your Dr is checking every visit! But not so, that they have no idea what's up. As far as we know, my wife's epo hasn't been checked since diagnosis. When she saw a renal consultant I asked about epo to try and increase her red cell count, the consultant did say that she had many patients with poor kidney function on epo, but to ask her hematologist about it, He said he knew all about epo and her red cell count was poor due to blood loss, as her ferritin stores also deplete quickly. Since a bleed site in her stomach was clipped two months ago her Hgb has been reasonably stable but low at just about 100. My theory is:- The basically dead kidney's adrenal gland has also died and altered the total natural epo produced, affecting her red cell production. Her capability of producing blood cells isn't in question as she can produce an over abundance of neutrophils and platelets Which is why we've asked for the epo to be tested.

[EPguy in reply to jointpain]

As you've found EPO is not normally followed by Drs, except as part of a PV Dx. With known kidney issues, it seems it should be standard along with GFR etc.

I get it checked only because I asked. Low EPO seems more common vs high. You can see here why I've been asking, GFR is 83 last check.

My Rheumatologist says it's a hematology thing so he would not order it, you found the same with the kidney Dr.

Is her hematologist open to monitoring EPO?

epo

[jointpain in reply to EPguy]

Thanks for replying! Her current hematologist isn't really open to monitoring her epo or even testing it! But as he's off sick, I've asked his replacement, who might well test it next week.I don't know but I imagine that low epo is probably coincides with low red cell numbers and vica versa. I do know her EGFR is below 50 and has been as low as 30%.

From the lack of other replies it does seem that MPN experts and Hematologists do not monitor epo test results, even though it may have a bearing on anemia in patients with MF and especially PV.

[EPguy in reply to jointpain]

Looks like a broken bridge between Hemo and Nephrology Drs. It could be adding EPO could help, it's a known procedure in MF But of course that requires Dr to order the EPO test. It's a surprise it hasn't at least come up with Hemo.

In my case too much EPO is not known except for secondary PV (high altitude etc) and some kidney cancers. Hence my unusual interest in EPO.