Hemoglobin decrease...

[tyefly]

 Well today I got a call from my clinic and was told to stop taking my EPO..... they said that my hemoglobin was too high.....  I ask how high and I was told that I am at 11.6..... I was told that the new protocol was to have my hemoglobin at 10.5.....  so they said that they will check it again next month....  So  I have been taking 10000 u  twice per week for a year and my hemoglobin has always been between 10.3 and 11.6.... My hemoglobin usually goes up when they give me some iron..... 

they told me that everyone in the clinic will have to hold their EPO for a while untill they can get everyone in the 10 for hemoglobin..... This is very said....   so many people will have to be tired now because of this new bundling program with Medicare....  I sure wish that  CMS would of had a higher range....10 to 12 is not right for everyone...

Again its all about the  payment...... money over rules how a person feels.....

[WishIKnew]

I was told the same thins recently.  Stop the EPO, IV iron instead.  New regs.   It's cheaper.....  I feel your pain!

[RichardMEL]

wow. really?

Our protocol was to try and keep us around 110-120 (11.0-12.0). We'd do a mixture of IV iron (usually monthly) and then epo or aranesp shots (seemed to depend on which neph preferred which product as to who got what, which seemed a bit weird to me).

Of course money not really an issue in our system.. thank god.

[galvo]

My rotten hemoglobin is at 76. Two units of blood to be transfused into me tomorrow. They still can't figure out why it is so low. Any ideas?

[tyefly]

Galvo....  do you take EPO....shots...  they should be giving these to you in center...

[Des]

In SA they want it to be 12. they only increase/decrease when it goes higher/lower than that.

If it is too high you will clot often in the machine.

 

[galvo]

Yeah, tyefly, I get iron and aranesp weekly. To-morrow will be my 4th blood transfusion in 3 weeks. I do not appear to be bleeding and have had a gastroscapy and an colonoscopy, neither of which found anything.

[WishIKnew]

Along these lines, just curious how many of us give our own EPO shots?  I do, do you?

[chook]

I do my own shots - Neorecormon - which is a single syringe. I was on Aranesp which I found way more painful but had to stop it for a while as my haemoglobin went too high. And when I recommenced EPO it was the Neorecorman.
Galvo, this sounds pretty serious. Hope you get it sorted soon.

[Zach]

Of course money not really an issue in our system.. thank god.

I think all governments are concerned with rising healthcare costs.

[billybags]

My husband injects his self once a month with Epoetin beta or Mercia as it is known. Doc says he is to reduce the volume. This is first time for 2 years that he has had iron infusions. Do not know why he has lost iron in the last 6 weeks. They say it happens.

[greg10]

..
they told me that everyone in the clinic will have to hold their EPO for a while untill they can get everyone in the 10 for hemoglobin..... This is very said....   so many people will have to be tired now because of this new bundling program with Medicare....  I sure wish that  CMS would of had a higher range....10 to 12 is not right for everyone...

Again its all about the  payment...... money over rules how a person feels.....

Hi Tyefly.  You are right to say everyone is different, but I do not see the CMS regulation negatively affecting the health of a dialysis patient.  I come down on erring on the side of caution and being a little tired versus a clotting problem or a stroke - and we ended up often with half empty vials of EPO in the fridge to show for it.  Our HGb readings are done every treatment and they have been in the range of 10 to 12 g/dL and our clinic/nephrologist have not been short in giving us plenty of EPO supplies.  We have been withholding EPO whenever levels reach around 11.5 because we know the readings can be easily be off by 0.5 g/dL.  We will often see overshoot readings, eg. last one was 12.3 g/dL.

The 11 g/dL to 12 g/dL level is a compromise, but not one that is cost related.  It is one based on risk and quality of life.

The studies are overwhelming regarding the risk of high erythropoeitin levels:
The New FDA label For Erythropoietin Treatment: Problems with Clinical Guidelines for Target Hb

Availability of ESAs has improved the lives of millions of patients with kidney disease, cancer, and other anemic states. Treatment results in reduced need for blood transfusion and improved quality of life. However, recent studies have suggested potential risk for increased mortality with treatment to higher Hb targets. The recent change in prescribing information for ESA drugs, by the FDA, was an attempt to protect patient safety in light of these studies. It is possible, however, that the language used was excessively cautious, potentially promoting insufficient anemia treatment with failure to appropriately and compassionately treat fatigue and restore compromised quality of life. During ESA treatment in kidney disease, an Hb target of 11-12 g/dl should permit significant quality of life improvement while avoiding the risk associated with higher Hb targets (Figure 1).

[Henry P Snicklesnorter]

.

[tyefly]

I am more concerned about feeling good....  I know that I dont feel good when my hemoglobin is at 10 or 10.5..  and feel better when its 11.5...  I have never been in the 12 or higher...  I have not had any problems with clotting on the machine....
Some people may feel ok in the 10  but some of us feel better at a higher level...  I am really feeling good now.. doing dialysis everyday ..hemoglobin and iron levels are great in my opinion.. 
  I have been using the same amount of EPO for over a year....  my labs have been really good...  ( some times I need IV iron and that does make a difference..) but why now do we need to stop taking EPO  or  start using a reduced rate....   I think its all about the 2% payment that they will loose if we are out of range.. of 10-12 ...  I guess I hate the thought that we have to have a lessor quality of life so they can get the full payment....
  Maybe I just dont get it.... 

[paul.karen]

Lowest my HG has been was 10.4.  I can tell you from my experience that i couldnt work. COuldnt walk up my stairs at night.  COuld barley stay awake at work.  Tired easily.

If they want to keep me at 10 or 11 i will have to quit my job.  Doing it at 10.4 for a month was bad enough.  I was told i had to get SICKER before they could make me feel better.  As in my HG had to be at 10 before i got a shot.  Thankfully my neph made some calls and got me the epo i needed.  It went up to 12-12.5 and i felt great could do my work and walk up my stairs.

The new bundling plan may be ok for people who dont work or have anything to do all day long.  For people who work it is BAD BAD BAD.  WE ARE ALL DIFFERNT should not be lumped as a whole.

So it souldns like they want people like me who work and pay taxes to stop working and live of the system.  I cant funtion with my HG that low unless i stop working and sit at home all day long.

Since i qualify for disability maybe i should just take it.  I hate payng taxs anyhow may as well live of others Social Justice maybe ill join the craze.

[okarol]

Yeah, tyefly, I get iron and aranesp weekly. To-morrow will be my 4th blood transfusion in 3 weeks. I do not appear to be bleeding and have had a gastroscapy and an colonoscopy, neither of which found anything.

That's a lot of transfusions in a short period. 

[sullidog]

I think those of us like me who have private insurance ought to be excluded from the bundling plan. My hg is 9.1 and it took me screaming at my neph to raise my epo, and they did so we'll see where it is next check.

[tyefly]

I agree.... I guess its all about the money again.....  Center doesnt want to pay any more than it has to...and they dont want to loose the 2% of the bundled payment.....

[MooseMom]

I agree.... I guess its all about the money again.....  Center doesnt want to pay any more than it has to...and they dont want to loose the 2% of the bundled payment.....

American exceptionalism once again...

[calypso]

My rotten hemoglobin is at 76. Two units of blood to be transfused into me tomorrow. They still can't figure out why it is so low. Any ideas?

Some of the causes of anemia are as folllows:

infection
bleeding
low iron
malnutrition
uremia (yes getting your BUN down helps)

Any of these ring a bell?

[billmoria]

In our unit (UK) if your hemogloban drops below 11 u get epo' aws ot rises  above 11 you g get less ane if it keep going up none. I am not sure that being tired is entirely related to wether you get epo or not.

[Zach]

Are you taking extra folic acid?

[rsudock]

I am worried b/c my hemoglobin has been 16 lately!!! They stopped the EPO...but I am freaking out that I am going to have a stroke!!!

[rsudock]

ps I have to say I feel great!