Hemoglobin / EPO

[Savemeimdtba]

So, my Hemoglobin has been really good the past few weeks so I've been off EPO for a little while now and I'm feeling great.  My recent labs came back and it's at 13.9 (which is good, right?) - I've done a little research online and it says trying to push the hemoglobin over 13 / 14 in kidney failure can be dangerous to the heart.. but my nurse recommended I start the EPO back again.  I didn't argue at the time (since she was texting me and leaving for vacation) but I'm a little worried about starting it again.. should I contact the Dr. and ask him or am I over-thinking this? 

[RightSide]

You should definitely ask your neph.  My neph suspended further doses of Aronesp after my hemoglobin hit 14.0.

(And I was surprised to see how rapidly my hemoglobin count started dropping without Aronesp.)

[Rerun]

You can go as low as 11 before you need to go back on EPO.  I personally feel that too much EPO can make your blood thick and clot off your access much easier then at a lower Hemoglobin.  11-13 is the range to shoot for.

Call your neph before you take the nurses advice.  Also, the clinics get more money for more EPO used.  So think about that.

[Zach]

The National Kidney Foundation's KDOQI Clinical Practice Guideline and Clinical Practice Recommendations for Anemia in Chronic Kidney Disease states:

2.1.2 In the opinion of the Work Group, in dialysis and nondialysis patients with CKD receiving ESA therapy, the selected Hb target should generally be in the range of 11.0 to 12.0 g/dL. (Clinical Practice RECOMMENDATION)

2.1.3 In dialysis and nondialysis patients with CKD receiving ESA therapy, the Hb target should not be greater than 13.0 g/dL. (Clinical Practice GUIDELINE - MODERATELY STRONG EVIDENCE)

http://www.kidney.org/professionals/KDOQI/guidelines_anemia/cpr21.htm

(ESA=EPO)

[kellyt]

My insurance made the final decision on whether or not I got the next shot of EPO.  I had to be below 12 I think (maybe 11) before my insurance would authorize the shots.  I reacted to the EPO really fast, so I never really had to get more than 2 or 3 shots before they would stop me for a while.

But I would agree with checking with the doctor.  13 seems pretty good to me.

[Wenchie58]

My hematologist started me on Arenesp as soon as I was referred to him (Hg of 7.0) after a few bi weekly doses my Hg went up to 12.2 and they stopped the injections.  It's been 6 weeks now and my Hg is still over 12.  He told me I would receive no more shots until it dropped below 12.  Our high range target is 13.5.

[paris]

My neph says exactly what Wenchie said.  I stay between 11-12 and don't get a shot unless it goes under 11.  Studies now show that being in the 13 range can be harmful.  Also, check with your insurance.  They may not cover when your numbers are in the 13/14 range.   How are you feeling?

[Savemeimdtba]

I feel just fine, not overly tired or anything.. I was supposed to start taking it again last Friday but I have been stalling because i just didn't feel right about it.  I'll call the Dr. on Monday and see what he says.  Thanks for the advice guys I have 3 different insurances including Medicaid and Medicare so payment has never been an issue. 

[RichardMEL]

My hemoglobin has been very stable for the past year or so around 120-121 (12.0-12.1 for you US types). Today's labs it fell to 100 (10) with no obvious reason though I had been feeling extra crappy during some of my sessions and at other times - this may explain it. It seems odd that it would just fall like that nothing much else has changed (my calcium is up a bit but still OK). It is so frustrating to keep all these things in order!

[jbeany]

My center restarts the shots once you drop below 12.  I usually do well just above 12 for a couple of weeks, then drop down in the 11's and have to have shots for 2 or 3 weeks, then repeat again.  I like the weeks I don't need it - it makes me horribly groggy the day I get it - I lose the whole afternoon sleeping.

[TiffanyJean]

So in like may/june Richie's hemoglobin was steady at 13/14 so they stopped him epo for almost about 3 weeks; then in july it had dropped down to 8.5 so now he's back on almost 3cc of epo again. they had rechecked his numbers at the middle of last week and they had dropped to 7.5 - so they are watching him very closely right now.

I would check with your doctor, and see how the your levels are over several months. you dont want it to be too high, but you also dont want it to get so low.

take care!!!

TJ

[kellyt]

I was the walking dead when my hemoglobin was at 9.  I can't imagine 8.5!  Bless his heart.   My last lab showed me at 11.9, but I'm still super tired.  Not so that I'm wiped out for the whole day, but I could definitely shut my eyes and rest throughout the day.  Maybe my little kidney is working so hard it's making the rest of my body tired trying to keep up.   

[Goofy]

Same here.  Based on my insurance, I can't get any epo unless I'm under 12.  I'm pretty sure my neph said they have to go by medicare rules which will only pay for the shots if you are under 12. 

One time I was at 12 and my doctor let me make the decision if I wanted a shot or not because he couldn't guarantee the insurance would cover it.  I had been anemic for so long that I was so excited that I finally felt good so I said I don't care what it costs, I'm sick and tired of being tired!!  It ended up costing me $600 so now I don't get any epo unless I'm under 12!  Its hard enough paying for all the medications let alone a shot for $600!

Anytime I'm not sure if what the doc or nurse tells me, I always question it.  Now with the access to the internet, I'm constantly doing research to make sure I'm making the right choices for myself.  In fact, as I've stated before, I came to this forum to get information from people who are "experiencing" the same issues I have so I can make better decisions.  I love all my docs but they are human and are not always right.

[del]

Hubby's hemoglobin is always 120 - 135 (12.0 - 13.5)  without any epo and he feels fine.  A new neph though says this is high and wants him to have an ultrasound on his kidneys. His hemoglobin has always been this high and nobody has questioned it. It eats really well so I think that that is why it stays so high.  He is also on nocturnal which may help but his hemoglobin was the same when he was in center!!  Off course hubby is really nervous about hospital tests (still) and knowing that he has to have this done and have a routine heart echo done this fall is really stressing him out. he doesn't mind havng the test but he is nervous about getting the results. 

I would definitely talk to the doc before I started taking epo again.  Nurses and docs have been known to make mistakes LOL!!

[paul.karen]

My hemoglobin last month was at 10.3 and my neph sent me to get arsenap.
I went to the hospital to get it and they called my insurance company.  They were told i couldn't get a shot until my number went under 10.  So i had to get sicker and feel worse before i could get the shot.
I started dialysis last week (cycler) and the hospital training me has started me on arsnap although my number still isnt below 10.  it is being charged as part of my treatment (i had them make sure i didnt want the bill).
I was told they want me to be between 11 & 12 on the hemoglobin since i am on dialysis.  But im still learning the ropes.

[RichardMEL]

Yes Paul, while on Dialysis you want to be between 11 and 12 - that is the target range. Going over 12 could get dangerous(with aranesp).

I find it incredible the system you guys have to deal with over there with the insurance and all that. Here if it's deemed we need it.. then we need it and it's provided - simple as that. Indeed before I started Dialysis I paid for it under our PBS system - which heavily subsidises medication and thus a script would cost say $30 (rather than the real cost, which for aranespt could be anything between $500 and $2000+ !!)... Since I've gone in center they just order it for me and I don't actually pay anything up front?!?!

I indeed live in "the lucky country" and NEVER whinge at a tax bill!!!!

(my hemoglobin was 100 again today (10.0) blah)

[del]

It's the same here Richard Mel if you need it it is paid for. 

[tyefly]

 My insurance company sent me a letter explaining their program and their target range is 10.5 to 11.5... so if I am  10.6  I will not get any more shots.......  I am thinking that this could be a yo yo effect... up and down.....  that must be hard on the body......