Stop EPO

[tyefly]

Clinic called today and told me to stop taking EPO....  I am not to take EPO until my next lab..... guess my hemoglobin was 12.3.....   we do labs once a month..... I have been taking EPO twice a week... and for the last year  I have always remained in the 10.5 to 11.5.... now  I am up alittle.... might be because I am doing nocturnal now...   now sure.... I am getting iron treatments now...   

   I hate this yo yo  effect..... everyone must be between 10 and 12..... there are no exceptions...   as I was told...  I am really feeling great...  now they want me to be more anemic and feel tired.....  I guess that is how we are suppose to feel....     

[greg10]

A facility has more leeway (up to 26% patients over 12g/dL) when it comes to the upper limit on hemoglobin level.  They have very little leeway for the lower bound 10g/dL (only 2% patients allowed to be under), otherwise a performance penalty can kick in.

http://www.federalregister.gov/a/2010-33143/p-102

[Jie]

When HGB is above 12, it is your benefit to stop it, unless you want to increase chances for heart attack...

[Brightsky69]

yup...my dialysis clinic use to monitor my Epo and never wanted my HGB to get too high. So they would take me off it for a week or so here and there.

[jbeany]

Yeah, that's standard.  If they start letting it drop to close to 10 and you feel more fatigue, you can insist that you need a different dose.  I hated the bouncing back and forth.  Up to 12, back to 10, and then you can have another big dose.  I fussed until I got them to go to a low level dose all the time.

[tyefly]

When HGB is above 12, it is your benefit to stop it, unless you want to increase chances for heart attack...

I dont understand why someone would be in risk of a heart attach with levels above 12      The standard for hemoglobin is 12 to 16... as I understand...       

[Zach]

When HGB is above 12, it is your benefit to stop it, unless you want to increase chances for heart attack...

I dont understand why someone would be in risk of a heart attach with levels above 12      The standard for hemoglobin is 12 to 16... as I understand...     

It might be the EPO more than the hemoglobin itself.

 

[MooseMom]

http://kidney.niddk.nih.gov/kudiseases/pubs/anemia/

tyefly, it is true that in kidney patients, higher hemoglobin levels achieved by EPO or Procrit result in a higher risk for heart attacks and stroke.  A couple of years ago, I had to take Procrit for a short time, and there was a black box warning on it about this very thing.  I am not sure exactly what the biomechanical reason is behind this risk, but it is there and has been documented.  Just another thing that makes dosing a kidney patient more problematic.  Studies have also shown that patients on nocturnal have less need of EPO, so that's a good thing!!

[okarol]

Jenna's hemoglobin is 10.7 and her nephrologist asked if she'd feeling tired, short of breath when out walking, eating ok, energy level ok? She said she feels fine so he said they want to wait until she has symptoms before giving Epogen. She still takes iron and eats a normal diet.

After reading the risks, I think he's right to not rush into it http://www.drugs.com/pro/epogen.html

[murf]

My HB has been about 14 for the last four years so don't take EPO. Not sure if this is related but about to have a triple bypass as calcium has narrowed the arteries.

[greg10]

"EPO use is associated with hypertension, endothelial dysfunction, and prothrombotic and inflammatory states in hemodialysis patients."  Therefore you want to use the lowest effective EPO dose, in our case we believe subcutaneous route is the most effective, generally achieving the same hemoglobin results using approximately 2 to 3 times less dosage than IV.

Abstract

Intravenous (i.v.) iron and recombinant human erythropoietin (EPO), like all other medications, are associated with the risk of adverse events. Historically, the primary concern with iron therapy has been the possibility of iron overload, which exposes the individual to the effects associated with nontransferrin-bound iron. Experience with EPO use has demonstrated an association with hypertension and with the upregulation of a number of markers of inflammation. The impact of these potential adverse effects merits careful analysis, given that both i.v. iron and EPO are designed for long-term use in a patient population at high risk for infection and cardiovascular disease. However, the incidence of iron overload and the risks associated with nontransferrin-bound iron have dramatically been reduced since the introduction of EPO therapy, and no data exist that demonstrate a definitive association between i.v. iron and an increased risk of morbidity related to infection or cardiovascular disease. On the other hand, EPO use is associated with hypertension, endothelial dysfunction, and prothrombotic and inflammatory states in hemodialysis patients. Risks associated with hypertension can be minimized by using the lowest effective EPO dose, which may be achieved through the regular use of i.v. iron. Judicious use of both i.v. iron and EPO may optimize cardiovascular outcomes.

http://www.nature.com/ki/journal/v69/n101s/full/5000403a.html

[greg10]

Another often overlooked aspect of EPO management is that of the serum albumin level of the hemodialysis patient.  If you are low in serum albumin, ie under 4 g/dL, you can often increase your hemoglobin level by just increasing protein intake while maintaining equal EPO injection, assuming you are getting adequate dialysis.  The following chart illustrates the  correlation.  Zach's whey protein ice cream is looking better all the time


Another way to look at this chart is that in order for the patient to respond well to EPO regiment (sensitive to EPO), you would need to have adequate serum albumin levels - and that means sufficient protein intake.
Serum Albumin Is Strongly Associated with Erythropoietin Sensitivity in Hemodialysis Patients
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2390989/

[noahvale]

**

[carson]

Does anyone know if Aranesp is also considered in this information? I was switched to Aranesp a few years ago and my hemoglobin has been 14 many times. They took me off it for a while feeling that my body had started making it's own hormones to create RBCs...but they were wrong 

[okarol]

Aranesp (darbepoetin alfa), Epogen (epoetin alfa), and Procrit (epoetin alfa) are erythropoiesis-stimulating agents (or ESAs) widely-prescribed for the treatment of anemia in cancer patients, chronic kidney failure patients and HIV patients.

All three drugs are manufactured by Amgen, Inc., a multi-billion dollar biotechnology corporation based in Thousand Oaks, California. ESAs were introduced over fifteen years ago and recently accounted for more than $10 billion in sales in a single year.

Serious safety concerns about ESAs began growing in 2004 and in November of 2006 the FDA issued an Official Alert regarding the three drugs. The FDA warned that studies have indicated an increased risk of death, stroke, heart attack and blood clots in patients with chronic kidney failure, when higher-than-recommended doses of ESAs are taken. Other studies have shown accelerated tumor growth in head and neck cancer patients – also noted when higher doses were taken.

[tyefly]

Serious safety concerns about ESAs began growing in 2004 and in November of 2006 the FDA issued an Official Alert regarding the three drugs. The FDA warned that studies have indicated an increased risk of death, stroke, heart attack and blood clots in patients with chronic kidney failure, when higher-than-recommended doses of ESAs are taken.

I wonder what a higher than recommended dose is...  I can understand taking too much of something and having side effects...  Does anyone know what a normal dosage is...   

[Zach]

I wonder what a higher than recommended dose is...  I can understand taking too much of something and having side effects...  Does anyone know what a normal dosage is...

When Medicare first approved paying for EPO in the early 1990s, it paid a flat per dialysis treatment dose of 4,000 units.

 

[Jie]

I wonder what a higher than recommended dose is...  I can understand taking too much of something and having side effects...  Does anyone know what a normal dosage is...

The target dose is the amount that makes the HGB to be 11-12. You can adjust the dose based on your lab results. Medicare even does not want to pay for it if the HGB is above 12.

[tyefly]

update....  I have had no epo for over a  month.....  got my labs today  and my hemoglobin is now down to 10.0...    they have been pumping me up with iron......  and Now my iron is up to 76 mcg/dl....   Now I have iron and no epo.....   and   Yes    I am tired now.....my red blood count is down to 2.87....    No more labs untill two more weeks...   I wonder what my labs will look like by then.....   I was feeling so good..... when my hemoglobin was in the 12....and now  tired....  Funny  now that I am getting over 40 hours of dialysis a week and yet I am still  tired.....like I was before I started D.....  this is no fun.... its almost summer and I need energy...

[greg10]

update....  I have had no epo for over a  month.....  got my labs today  and my hemoglobin is now down to 10.0... ..

I don't see why they would want to be in non-compliance with the Quality Incentive Program if you fall below 10.0.  Please see the chart above and remind them of the QIP and that they only have a 2% margin for patients falling below 10.0.
http://www.federalregister.gov/a/2010-33143/p-102

  Since you are doing home dialysis, you could extend the effectiveness of EPO by doing subcutaneous injections as opposed to IV.