CKD and Anemia

[Black]

I just read a terrific presentation by a Neph, w/ great credentials, on the awful statistics on anemia in CKD.  The percentage of patients coming for their first Neph appointment is around 60%, and it continues to go up while being treated by Nephrologists to around 80%.  The stats show that anemia continues to be a problem and directly correlates to hospitalizations, cardiac complications, strokes, and death.

The Doc really laid it on the line and let the Nephs know they are failing their patients.  This is a link to the entire presentation but the site requires registration in order to access.
http://www.hdcn.com/symp/06rpasat/per/flash/flash_perp.htm

I thought it was really cool that the last slide in the presentation had a quote from Charles Shultz and right below it a quote from the Doc who gave the presentation.

"God put us on earth to achieve a limited number of goals. Right now, we are so far behind that we cannot die."  Charles Schultz

"God put us on earth to achieve a limited numbers of goals. Right now, we are so far behind that we as nephrologists cannot die"
Brian J. G. Pereira, MD

Can you imagine having a Neph that cool?

[Rerun]

I didn't read the article, because I didn't want to register, but it is not "breaking news" that kidney patients are Anemic.  Infact, when I was on dialysis a long time ago we had regular blood transfusions when we got low on red blood cells.  Now, with Epogen it is not a problem.  OR... less of a problem.

[Zach]

Ah, the good old days.  I remember them well!   

[Black]

I didn't read the article, because I didn't want to register, but it is not "breaking news" that kidney patients are Anemic.  In fact, when I was on dialysis a long time ago we had regular blood transfusions when we got low on red blood cells.  Now, with Epogen it is not a problem.  OR... less of a problem.

Yeah, I know for all of you who have been dealing with CKD/dialysis for a while were probably well aware of the problems w/ anemia.  I'm so new at all of this and I still have so much to learn.    But, having a nephrologist stand up at a meeting, in front of other nephrologists, and present the black and white proof that they are doing an absolutely terrible job, to me, was notable -- especially that last quote. 

I almost feel sorry for the Neph that will be treating my husband while he is on dialysis.  Until I know I can trust him to take good care of my husband, I'll be a real irritant and second guess everything.  Even after he proves he's concerned and conscientious, I'll still be monitoring everything he should be doing for my husband.  Of course, y'all will be getting the play-by-play.

[BigSky]

Its never been a problem at our unit.

Back then and now they give blood if someone is way too low.

Back in the mid to late eighties we were given deca durabolin to build blood cells and it seemed to work pretty good for me.

Went to Epo in 89 and last year they moved to Aranesp.

[Zach]

Its never been a problem at our unit.

Back then and now they give blood if someone is way too low.

Back in the mid to late eighties we were given deca durabolin to build blood cells and it seemed to work pretty good for me.

Went to Epo in 89 and last year they moved to Aranesp.

deca durabolin ... YES!  Made me strong "like bull!"   

[Rerun]

Black, don't ever let your guard down.  Even if you trust this Nephrologist like your "Father" you still question things that you don't understand.  Better yet your husband needs to start asking questions.  It is his life.

[BigSky]

deca durabolin ... YES!  Made me strong "like bull!"   

Deca should be brought back in the treatment of patients who want it.  I have yet to hear of any doctors use the protocol on dialysis patients.

Problem areas for dialysis patients are post dialysis fatigue, muscle wasting.  Studies show that patients treated with deca were able to reduce if not eliminate the post dialysis fatigue and actually showed them to build muscle while on dialysis.  Most recent study was in 99.  However the mention of steroid freaks most doctors.  While at least both of the docs here who deal with us.

[angieskidney]

Deca should be brought back in the treatment of patients who want it.  I have yet to hear of any doctors use the protocol on dialysis patients.

Problem areas for dialysis patients are post dialysis fatigue, muscle wasting.  Studies show that patients treated with deca were able to reduce if not eliminate the post dialysis fatigue and actually showed them to build muscle while on dialysis.  Most recent study was in 99.  However the mention of steroid freaks most doctors.  While at least both of the docs here who deal with us.

Why would the docs freak about steroids when dialysis patients who get transplant are put on Prednisone? I don't understand, given that, why they would be so against Deca!

[BigSky]

Why would the docs freak about steroids when dialysis patients who get transplant are put on Prednisone? I don't understand, given that, why they would be so against Deca!

They are two different classes of drug.  After a transplant they give glucocorticoids which are adrenocortical steroids.  Deca is an Anabolic steroid.

[angieskidney]

Why would the docs freak about steroids when dialysis patients who get transplant are put on Prednisone? I don't understand, given that, why they would be so against Deca!

They are two different classes of drug.  After a transplant they give glucocorticoids which are adrenocortical steroids.  Deca is an Anabolic steroid.

Oh that makes sense! That is why they keep me on the dosage of Prednisone I am on even after the transplant failed and said something about my adrenal glands! Finally it all makes sense!

So Eprex and Arenesp don't work as good as Deca then? I have never even heard of it but have only needed anything since 2001.

[BigSky]

No they work very well.

The thing with Eprex and Aranesp is that they only address the red blood cell issue.

Deca was used for blood cells and is not as good as Aranesp or Eprex.

Where deca shines is its ability to help stop the catabolic process of dialysis by keeping people in a positive nitrogen balance and thus help eliminate muscle wasting, loss and and associated muscle weakness that patients report while being on dialysis.  It also helps patients regain muscle mass.

[angieskidney]

the muscle loss worries me because when i switched to hemo I was malnourished from how severe my peritonitis was with the PD I was on. I have been very week since last summer and recently have gone back to work and even though my hemoglobin is good I am easily tired and weak. So that is why I am asking.

[Zach]

Deca should be brought back in the treatment of patients who want it.  I have yet to hear of any doctors use the protocol on dialysis patients.

Problem areas for dialysis patients are post dialysis fatigue, muscle wasting.  Studies show that patients treated with deca were able to reduce if not eliminate the post dialysis fatigue and actually showed them to build muscle while on dialysis.  Most recent study was in 99.  However the mention of steroid freaks most doctors.  While at least both of the docs here who deal with us.

I'd like to see that study, BigSky.  Do you have a link?  Deca was used at my clinic until EPO came out in the late '80s (or was it the early '90s).  Men received it, but I don't believe women received it, because it's a male hormone.  It has got a bad rap because it's been abused by athletes ... even those in High Schools.  I don't believe kidney patients ever received that high level of dosing.

[BigSky]

I'd like to see that study, BigSky.  Do you have a link?  Deca was used at my clinic until EPO came out in the late '80s (or was it the early '90s).  Men received it, but I don't believe women received it, because it's a male hormone.  It has got a bad rap because it's been abused by athletes ... even those in High Schools.  I don't believe kidney patients ever received that high level of dosing.

Here they gave it too both male and female.  I suspect much lower doses for females.  Personally mine was 200mg every two weeks.

I no longer have the study (pitched it after both docs shot me down on it) however here is a link to a press release on it.  I used to have a link (lost it) to a medical site that did various test studies and one of them was for dialysis patients who would undergo the steroid protocol, it was suppose to be a larger study than the one in 99. .  My understanding the study had ended but I have yet to read any results of that one yet.


http://pub.ucsf.edu/newsservices/releases/2004010773/

[Zach]

Thanks BigSky.

[Black]

Black, don't ever let your guard down.  Even if you trust this Nephrologist like your "Father" you still question things that you don't understand.  Better yet your husband needs to start asking questions.  It is his life.

You can bet that I will try to never again be unguarded with anyone involved in his health care.  After seeing that a neph stood up at a medical conference and told other nephs that they are doing a terrible job of battling anemia in their patients you know I'm going to be watching them all even closer.

Mike is getting much better about asking questions that he ever was before.  When we visited the last dialysis clinic (the 4th one we've been to) he asked more questions than I did!  It has taken years to get him to the point where he feels comfortable in a medical facility.  He used to pass out when he had blood drawn, and hadn't been to the dentist but once in the 10 years before we got married.  In the almost two years since the PKD was diagnosed I've really concentrated on getting him to be as comfortable as possible, and relaxed enough to really listen and ask questions.  He has come a long, long way.

[Zach]

Has anyone used IV L-carnitine (Carnitor) for anemia?  It has several medical uses, and one is for EPO resistant anemia.

[BigSky]

Has anyone used IV L-carnitine (Carnitor) for anemia?  It has several medical uses, and one is for EPO resistant anemia.

I haven't used it for that but I did take L-carnitine tablets before dialysis as a study mentioned that l-carnitine might help with post dialysis fatigue.  Considering the out of pocket cost for it and the amount they recommended to take it wasn't worth it.  Didn't work for me either.

[Zach]

It's very controversial.  Carnitor is approved by Medicare only in cases of EPO-related anemia or hypotension.  Studies have shown it might have a positive affect on muscle tissue because it works in the cell's mitochondria and helps with the transport of long-chain fatty acids.

It may have other benefits, as stated in the link below, but there needs to be a lot more research.

http://www.kidney.org/professionals/kdoqi/guidelines_updates/nut_appx10a.html

[Dr. Evil]

Carnitor needs special approval from medicare, and a ton of paperwork.  And then, they still my deny the claim.  So, the center has to lay out the cash for it, then maybe medicare will pay for it if they are in a good mood!.  All of this aside, the data on the supplement is really weak. We dont know if it makes a difference or not in any outcome with ESRD.

Testosterone is the old-school way of trying to get hemoglobins up.  Lots of side effects, some good, some bad.  We may see more of it in the future.  Right now, the centers can bill separately for epogen.  Soon, this may stop, and the centers will get a flat fee for a dialysis treatment....including drugs.  So if that happens, i guess the use of expensive drugs (epo) will fall and cheap drugs (testosterone) may go up.  We will have to wait and see what happens.

[Zach]

Right now, the centers can bill separately for epogen.  Soon, this may stop, and the centers will get a flat fee for a dialysis treatment....including drugs.  So if that happens, i guess the use of expensive drugs (epo) will fall and cheap drugs (testosterone) may go up.  We will have to wait and see what happens.

Dr. Evil, please don't scare us!   

We should start another discussion thread on Medicare reimbursement.  It should be titled, "Myths vs. Reality:  The  True Story of Medicare ESRD Reimbursement."

[Dr. Evil]

Zach...not trying to scare you.

However, if you want to have any say in these matters (or any ESRD matters), I would strongly encourage you to contact your representative in the US congress. 
ESRD reimbursement can only be changed by an act of congress (literally).  It is unlike any other part of medicare.

Our professional organization tries to help (the RPA....Renal Physicians Association)...but ultimately we are viewed as a bunch of whiny docs crying poverty every time the budget comes up for renewal. 

If congress hears more from individual constituents, it has more (...hopefully) impact......esp. if you throw in a check as well !

[Zach]

As I said, we really need to start another discussion thread.

There's more to Medicare ESRD reimbursement policies than meets the eye.  Some in Congress, such as Senator Charles Grassley (R-IA) and Congressman Pete Stark (D-CA), might look at the continuing issues of waste and abuse in the dialysis unit and say that the policies need to address these perennial problems.  Back in the late 1980s, the late Senator John Heinz III was also concerned with these same issues.

Before we patients advocate for anything, we need to know the truth, the whole truth and nothing but the truth.
(That's the Perry Mason in me.)     

[Rerun]

20 years ago we rinsed back all our red blood cells from the lines.  Now they throw away the lines and they are red.  There is a LOT of wast that goes on.  Epogen could be cut down a lot if we would save the red blood cells we have.