Survey: Hemoglobin target & EPO

[kickingandscreaming]

Recently there has been some discussion about what target range nephs are prescribing for Hemoglobin levels.  And it appears that there is quite a range out there.

My neph adheres to the "black box warning" on EPO and keeps my Hgb in a relatively low range, one that frequently dips into troublingly low territory (e.g. 8.4 right now).  I find that the low Hgb level is one of the greatest enemies of a good quality of life for me and would like to make an argument to raise the target. 

I'm curious about what others of you are maintained at and how frequenly you get EPO (or similar). Here's an article that SutureSelf submitted about the subject that calls these ranges into question.
http://homedialysis.org/life-at-home/articles/anemia-epo-kidney-failure-and-you

[Simon Dog]

My clinic (Fresenius) is switching from EPO to Micera, the later being a time released form of EPO (bound to polyethylene glycol for slow release).   It's working well for me.   I currently get Micera once a month at the clinic, with a mid-month shot if my HGB drops below about 10.  When I was on EPO, I was taking weekly doses at home.

I checked with the head of Hemo at one of the major Boston hospitals, since I was suspicious of a med change made for cost reasons.  He told me he thought is was a good idea, without even considering cost.

I'm targeted for 10.x and it generally stays in that range.   My neph increased my target to 12 when I was studying for a hip transplant, since the blood bank at the hospital doing the work required a minimum HGB of 11.0 for me to open an account.

[tigtink]

I fought hard to get my hemoglobin in a reasonable range. My first nephrologist want to keep it around 10 and have me stop all EPO when it goes above 11. That did not work for me. By the time I get to 10 I can barely function and I am so weak I can't get up from a sitting position without holding on to something. Below 10 and I am nonfunctional. Plus he only ordered blood tests every 3 months so by the time the numbers got low enough to restart the EPO it was way too low and when it was high it would go well above 13 before I could get it down again. It jumped all over the place and I felt like crap. I could not exercise and I gained weight. When my new nephrologist took over a couple of years ago we had a talk and he said I appear to be super sensitive to low hemoglobin. We agreed I could manage the EPO myself and keep my hemoglobin between 11 and 12, trying to stay closer to 11, as long as I had monthly labs drawn and monitored the hemoglobin levels closely.  Since then I have been able to keep it between 11 and 11.5 most months, with occasional numbers close to 12. I give myself anywhere from 1 to 3 shots per month depending on what the numbers look like each month. It bounces around a lot so monthly tests are essential. The results have pleased both my nephrologist and me. I began to exercise regularly and lost 50 pounds. My kidney numbers have improved or held steady. Keep in mind though, that I have no existing cardiology issues and I am not on dialysis yet so my risk for complications is less. But for me the difference between 10.5 and 11.5 is major when it comes to overall health and quality of life. At 8.4 I would likely end up in the hospital or at minimum stuck in bed sleeping all day. The only problem is my insurance prefers it to go below 10 before they cover the prescription, although the last time my doctor got them to renew it at 11. So he writes me a prescription for 4 shots a month and I stock up, keeping the extra in the frig, and use it only as needed.

[Simon Dog]

Plus he only ordered blood tests every 3 months

WTF?  This should be done monthly, more frequently if indicated.

[Mindy]

I have private insurance and medicare. Medicare requires it to be below 10 or they will mot cover. Nor will my ins, I take 35 weekly to maintain at 10 it sucks.

[cassandra]

I'm in the UK and I try to keep my HB between 10.5 and 11.0 any higher and I have clots in my fistula or in the machine. I use 5000 EPO 2x a week. I feel fine

I found this in a NICE report

The median Hb of patients on haemodialysis in the UK was
11.6 g/dl with an interquartile range (IQR) of
10.6–12.5 g/dl, 85% of haemodialysis patients had Hb levels of at least 10.0 g/dl and 54% were within the current target range of 10.5–12.5 g/dL.
c) The median Hb of peritoneal dialysis patients in the UK was
11.7 g/dl (IQR 10.8–12.6 g/dl), 89% of peritoneal dialysis patients had Hb levels of at least 10.0 g/dl, and 55% were within the recommended range of 10.5–12.5 g/dL.
d) In haemodialysis patients receiving erythropoiesis stimulating agents, the median dose was 8000 iu/week. In peritoneal dialysis patients receiving erythropoiesis stimulating agents the median dose was 4000 iu/week.

[Simon Dog]

I have private insurance and medicare. Medicare requires it to be below 10 or they will mot cover. Nor will my ins, I take 35 weekly to maintain at 10 it sucks.

I have medicare primary and private insurance secondary.

I am treated an Fresenius clinic, and I know my MD is subject to all the FMC rules (no soup, er, no 200 filter for you; calicitrol since it is cheaper than the more effective paracalcitrol; etc.).   I have never run into an EPO.Micera not covered below 10.  In fact, my dose was increased slightly since my last HGB came in at 10.2.

[Charlie B53]

I am on PD.  Not sure what my HgB is.  My Red Cell count is currently acceptable, whatever that number is.  My Team says as long as my red count stays this high I do not need Epo.  But I do get tired easily.  More so when my iron levels get too low, then they give me IV Iron, what looks like ink.

Is this related?

[SutureSelf]

I have private insurance and medicare. Medicare requires it to be below 10 or they will mot cover. Nor will my ins, I take 35 weekly to maintain at 10 it sucks.

Medicare has not set a low side Hgb number for withdrawal of EPO and other ESA payment.  Why would they when the whole purpose of giving dialysis patients the medication is to raise low red blood counts? ESA's are especially given to patients when their Hgb is 9 or lower.  Medicare covers payment for EPO and other ESA's  through the dialysis treatment bundled rate.  In fact, even though ESAs come with a black box warning on suggested Hgb levels, it is just that, a warning.  Physicians can still determine what is best for their patients.  Please click on the link kickingandscreaming included in her opening post and read the info.  The author, John Agar, MD, is a world renown nephrologist from Australia.  You might want to print the article to give to your nephrologist and discuss raising your Hgb level. Be sure to let him/her know how yucky you feel with it at 10.  Good luck and best wishes. - SutureSelf

[SutureSelf]

Recently there has been some discussion about what target range nephs are prescribing for Hemoglobin levels.  And it appears that there is quite a range out there.

My neph adheres to the "black box warning" on EPO and keeps my Hgb in a relatively low range, one that frequently dips into troublingly low territory (e.g. 8.4 right now).  I find that the low Hgb level is one of the greatest enemies of a good quality of life for me and would like to make an argument to raise the target. 

I'm curious about what others of you are maintained at and how frequenly you get EPO (or similar). Here's an article that SutureSelf submitted about the subject that calls these ranges into question.
http://homedialysis.org/life-at-home/articles/anemia-epo-kidney-failure-and-you

My nephrologist wants me to maintain an Hgb of 12.  Even during the black box warning craziness, she still allowed me to go as high as 11.5.

[kickingandscreaming]

My nephrologist wants me to maintain an Hgb of 12.  Even during the black box warning craziness, she still allowed me to go as high as 11.5.

How fortunate you are!  Some days I can't even get through the day.  My QOL is so low when my Hgb dips and it happens more frequently than I'd like.  I'm trying to compose an email to my nephro to make a case for raising my target.  I will quote the Agar article. But I'm looking around for more information that validates my case.  I will meet with her next Thursday, so I want to present this to her before that. Any other suggestions?

I personally find it very difficult to read most medical articles and research findings as they are so poorly written.  I did find this but find it hard to interpret:

As suggested by large RCTs such as the CREATE, CHOIR and TREAT in the Western countries, we think that a target Hb of >13 g/dl may be associated with higher risk of occurrence of CVD [emphasis mine].

Hb level of >11 g/dl should be aimed for all the CKD patients. All the international guidelines and our clinical experiences taken together, we should consider administration of ESA when the Hb level becomes <11 g/dl in pre-dialysis patients and 10 g/dl in dialysis patients. The target Hb we should achieve is >10 g/dl in dialysis patients and 11 g/dl in pre-dialysis patients. We recommend that the target Hb should not be >13 g/dl in all the CKD patients.
https://www.karger.com/Article/FullText/440849

[PrimeTimer]

My husband's neph wants his Hemoglobin to be between 10-11.   Since it's been hovering around 9+ they have been giving him the maximum dose of EPO 3xweek. (sorry, don't know exact dose other than it's the max). They give him IV Iron as needed and also based on his Serum Ferritin level (which is suppose to be greater than 100). He feels lousy and also looks very pale when his Hemoglobin is below 10.

[Simon Dog]

(sorry, don't know exact dose other than it's the max).

There is the max and then there is the max. 

My record was 50,000 units a week (yes, really).   I came out of hip replacement surgery at 6.2 and I was stubbornly refusing the transfusions that resident MDs were writing orders for.   (The chief of hemo was kind enough to give one of these residents a nice lecture on why it was reasonable for a dialysis patient to resist transfusions).  They let me go home at 6.2 after keeping me a couple of extra days to make sure it stabilized, then it took about 4 weeks before I got up to 8.5 which was the criteria for getting out of my temporary exile to the clinic back to home hemo.   I hover a bit over 10 now.

When I was on EPO and traveling, I was told to either time my EPO shots so that I would not need any when at the clinic I was visiting or bring my own EPO with me, as clinics would not want to give transients EPO at the bundled rate.

[kickingandscreaming]

I found this artlcle.  Here is a relevant section of it. Those of you who can read/interpret medicalese will, I hope, weigh in on what it concludes:

CKD Anemia Treatment in Dialysis Patients: Does it Differ from Pre-Dialysis Patients?
It is true that dialysis patients are a different population from pre-dialysis patients, even when anemia issues are considered. In contrast to pre-dialysis patients, patients undergoing dialysis have blood loss through the dialyzer and tubing, a greater degree of iron deficiency (perhaps because of reduced absorption and mobilization of iron), and more inflammation, causing erythropoietin resistance. Generally, epoetin dose requirements appear to be higher for dialysis patients than for pre-dialysis patients. Therefore, it seems to be justified to argue that dialysis patients should be considered a distinct group. However, the significance of conceding this point should not be underestimated. Because there are no ongoing or planned randomized controlled studies evaluating Hgb target levels in dialysis patients, this means that until such a study is published, the status quo ante of aggressively treating the anemia these patients have would prevail. It would also allow CMS to provide dialysis chains the flexibility, through relaxed reimbursement policies, to drive Hgb values beyond the FDA-recommended level of 12 g/dL. However, most importantly, results looking at anemia targets have been similar between dialysis and pre-dialysis patients.
Why should physicians treating their dialysis patients aim for Hgb levels
􏰂12 g/dL? First, because the recent data from the CHOIR study indicated increased deaths and cardiovascular complications with no significant improvement in quality of life in the higher versus lower Hgb group. Second, because the data from studies of dialysis patients (Normal Hematocrit and Canada-Europe studies) and pre-dialysis patients have provided concordant results, indicating the potential for harm to both dialysis and pre-dialysis patients; thus, concerns about differences in the dialysis and pre-dialysis populations are likely exaggerated, at least as they apply to anemia. Third, several studies in cancer and other populations have reported increased risk with aiming for Hgb levels 􏰀12 g/dL.
Finally, we should defer to the FDA on safety-related issues. The FDA recently issued a black box warning that recom- mended that the Hgb in patients with kidney disease not rise beyond 12 g/dL.27 The black box warning is the most severe warning about the safety of a drug that the FDA issues, and it has resulted in a label change. The FDA is independent and rigorous in its regulatory oversight of drugs. Until a future study supports the safety of a higher Hgb level in kidney patients, we should adhere to the FDA’s advice. D&T

http://onlinelibrary.wiley.com/store/10.1002/dat.20120/asset/20120_ftp.pdf;jsessionid=8BF359B5011BFDC6908EEC63844C44CE.f01t03?v=1&t=isotwwc4&s=405a6356df43f990ad1dec0f125731f819810d10

[2ndgenerationesrd]

My husband's neph wants his Hemoglobin to be between 10-11.   Since it's been hovering around 9+ they have been giving him the maximum dose of EPO 3xweek. (sorry, don't know exact dose other than it's the max). They give him IV Iron as needed and also based on his Serum Ferritin level (which is suppose to be greater than 100). He feels lousy and also looks very pale when his Hemoglobin is below 10.

My hemoglobin is 7.6. I take  12k 3xs a week . just started that last week. Prior I was on 8k 3xs a week.

What's the maximum dosage? I was wondering and tried to look it up however couldn't find it


Update: Geesh my silly self just seen u said u didn't know the dosage. I was so excited to see maximum dosage that I didn't read the rest and clicked the quote button.

[2ndgenerationesrd]

(sorry, don't know exact dose other than it's the max).

There is the max and then there is the max. 

My record was 50,000 units a week (yes, really).   I came out of hip replacement surgery at 6.2 and I was stubbornly refusing the transfusions that resident MDs were writing orders for.   (The chief of hemo was kind enough to give one of these residents a nice lecture on why is was reasonable for a dialysis patient to resist transfusions).  They let me go home at 6.2 after keeping me a couple of extra days to make sure it stabilized, then it took about 4 weeks before I got up to 8.5 which was the criteria for getting out of my temporary exile to the clinic back to home hemo.   I hover a bit over 10 now.

When I was on EPO and traveling, I was told to either time my EPO shots so that I would not need any when at the clinic I was visiting or bring my own EPO with me, as clinics would not want to give transients EPO at the bundled rate.

Is that 50k 3xs a week or total?

My hemoglobin is 7.6 now I take  12k 3xs a week . just started that last week. Prior I was on 8k 3xs a week.

My hemoglobin when I started epo was 7.2 and that was July 28. So it hasn't gone up much. I told my neph my concern of it not going up so she upped it to the 12k last week. I'm Getting discouraged. Is this normal? Its been about a month and 2 weeks.

[kickingandscreaming]

My hemoglobin when I started epo was 7.2 and that was July 28. So it hasn't gone up much. I told my neph my concern of it not going up so she upped it to the 12k last week. I'm Getting discouraged. Is this normal? Its been about a month and 2 weeks.

Do you have adequate iron reserves to process the EPO?  If your iron is low, then that is the first place to intervene.  I've been at 8.4 for the last couple of weeks and I can barely function. I imagine that 7.2 is way worse feeling.

They have to build it up slowly, over time.  If it continues not to work, then a transfusion might be called for.

[Rerun]

They try and keep mine at 11.  We still use EPO at my DaVita.

My Doc came in Aug 30 to see us and then came in Sept 4 to see us. One treatment in between!

I said, "you were just in".... she said "That was last month"....  That's BS  No new blood work no new anything.  That is Medicare Fraud.

She will charge Medicare for the monthly visit.  I guess I should wait until September is over.  But if she thinks that was her September visit she is pushing fraud.

[Fabkiwi06]

My Hgb likes to yo-yo very suddenly. My DCI clinic uses Arenesp. Typically, they will give you the shot if you're running below 10. However, they start giving me shots when I hit around 11 because once I dip below 10, I tend to crash down to 6 very quickly and I'm not fond of passing out. Since I'm on PD, we aren't worried about machines clotting.

[Vt Big Rig]

At old clinic I was on EPO. Hover between 10 and 11. Adjusted the dose based on weekly draw. They switched to Micera and I reacted badly to that. Headaches really bad. Went back to EPO,. When we left they gave me all the stock they had as I was the only one on it..

It has run out this week and new clinic use procrit. .... and they only take Hgb draw once a month.

I took procrit before I started dialysis .......

[kickingandscreaming]

I wrote to my neph about how absolutely lacking in energy I am and presented her with Dr. Agar's article and my woe-is-me-bloodless rant.  I had mentioned that I surveyed other dialysis patients who were allowed a higher hgb target.

Here's what she wrote back:

-the goal remains 10’s (I can finagle low 11’s,that’s it),I hope your friends are not having strokes,since we live in America we follow the FDA
-you might need to come in more often for it,otherwise we blast the dose
-some resistance from infection
-need redo basic workup for OTHER causes of anemia,then if stuck you go see the hematologist
-see you Thursday,we’ll get it up

Then I read this from RSN and some DCI docs:

At DCI, ESA doses for 90% of our patients are adjusted by computerized protocols, with a target hemoglobin of between 10 and 12. Patients and doctors can deviate from these protocols. We’ve found that if we stop ESAs when the hemoglobin level exceeds 12, 90% of our patients have values between 10 and 12 for at least 6 months of the year.

http://www.rsnhope.org/health-library/article-index/anemia-management/

[Fabkiwi06]

If her target is 10 and you're at an 8.4, then I don't understand why you're not getting it?

Edit to add: Are you getting iron at all? Very occasionally they will give me iron and not the EPO if I'm really dragging and my hgb is technically ok.

[Simon Dog]

At DCI, ESA doses for 90% of our patients are adjusted by computerized protocols, with a target hemoglobin of between 10 and 12.

When things are going "normally" for me, the RN sets my Micera dose (and formerly my EPO dose) by using a formula.   

When I had unusual needs (needed HGB>11 to open an account at a blood bank; had HGB 6.2 after surgery and needed to get it up) I got my dosing schedule directly from the MD who was using his clinical judgement rather than a set formula to pick my dose.

[kickingandscreaming]

If her target is 10 and you're at an 8.4, then I don't understand why you're not getting it?

I am getting EPO.  It just hasn't done the job yet.  I always ask about my iron and am always told that it is fine.

And I think everyone is  bending so over backwards so as not to exceed my target that I'm often in a hole.

[Charlie B53]

I don't know how the numbering or rating system works for iron.  I've heard it expressed a couple of different ways.

My PD Nurse tells me iron should ideally be at 30%  She gets excited when mine drops barely above 10% calls Dr to get an order to give me IV Iron.  Since they increased my daily iron pill to two I haven't needed an IV boost.  Not sure my actual number, just that I don't need an IV added, yet.  Maybe I need to bite on a nail more often.  I'm irritated at that headstrong Grandkid often enough I think I could.  If I had teeth!