Hemoglobin protocols

[fearless]

For anyone who's interested:

There is no national restriction on prescribing epogen - but clinics are expected to maintain their patients between 10-12 and are monitored to do so.

My clinic/doctor has basically been lying to me for about 4 months and I'd been thinking about stopping treatment because I really didn't feel my life was liveable anymore.  My hemoglobin drops rapidly without epogen, and comes up slowly.  the clinic cuts off the epogen when the Hg gets above 11, and doesn't start dosing until below 10.8 (which is ridiculous, because everytime it gets cut off it's below 10 before I start getting it again, and then it takes weeks to get back up to 11)

Well, just found out the only reason they're restricting me (and everyone) is because Medicare is bundling the epogen in with everything else, and Fresenius is using studies that show an Hg artificially kept above 12 is bad to deny epogen to patients above 11.  (meanwhile, well-established research also shows that chronic anemia 10-below is related to increase in death)

Um,  I'm dying anyway.  You want me to go ahead and kill myself because I'm too tired to live?  My doctor has denied any change in my prescription even though every month I've been reduced to tears in the office as I try to make her understand what trying to live this way is like.
 
And, y'know, I wasn't meaning this to be a bitch session, but, since it's all anonymous, hey, she's a BITCH!  (referred to us patients as "you people")

PS, I know there's clotting issues and stuff, but before April I was on a higher protocol, and I had no issues with clotting/BP, etc.  I really don't feel that this is being done in my best interest.  Thanks for listening.

[jeannea]

The bundling is affecting some epo use but it sounds like your clinic is within the new guidelines. I realize that you used to get more epo and never died. But real studies have shown that there are some serious risks with using epo above certain levels. There have been labeling changes from the FDA and good doctors are paying attention to the risks as well as the benefits.

How is your iron level? That needs to be maintained as well as hemoglobin.

I don't believe your doctor is lying to you. I think you should discuss your concerns with her and tell him how tired you are.

If you search here for bundling and epogen there are some threads that explain it more.

[justme15]

I don't mean to sound insensitive, but I just don't understand.  I guess we all are different, but when your hgb is 10, you are too tired to live? My hgb right now is probably 8 (which is high for me) and I work full time ( a relatively physical job) and i'm about to go walking for 30 min!   i'm wondering if there is some other reason for your severe fatigue?

[Sydnee]

I totally understand. I have not started dialysis yet but my hgb is at a 9.9 and I am much more tired than I was just a few months ago. I have no energy really.

How ever my husband was at a 6 hgb when the admitted and started dialysis. He had done a full  (12 hour) shift at work the day before. he is currently at a 9 and doing good there.

My point is each person is different, try to make your dr understand. Find a different dr if you can't.  Are you doing you part? are you eating enough protein, eating well?   

[Big E]

Yeah, I don't understand either why some people with anemia can work full-time, go for walks, play sports, etc.  If you can do those things, good for you.  What I do know is that I can barely drag my  around every day, and after awhile that gets to be a real bore.  I used to enjoy working out, but now I can barely make myself go for walks. Besides which anemia can also kill your appetite, which only makes things worse.

I realize that there's a risk associated with epo, but why are the dialysis centers suddenly so cognizant of it?  It couldn't possibly be because of Medicare's new bundling policy??  As long as there's a profit motive involved, you have to wonder if financial considerations are given more weight than clinical ones.

BTW, my hemoglobin is 9.5 to 10 right now.

[Rerun]

I've heard that Epo in the lines takes longer and a lot more to do the job.  I guess a shot in the arm of the stuff or I guess they call it Procrit is much more affective.    So ask your doc if you can just get a shot in the arm of the stuff.  It stings a bit but if it helps.... it would be worth it.

[justme15]

i suppose I'm envious that you guys can obtain a hgb of 9.5-11. If i ever reached those numbers I would feel like superwoman!
btw, i give myself procrit weekly, 40,000 units.

[fearless]

well. i guess i should tell those of you who have commented here that I'm happy you're able to do well with a lower hemoglobin.  But here's the story:

i first developed anemia twenty years ago, before my kidney failure really even started to become a problem.  you see, the kidney does many things, and these things are done in different structures within the kidney.  I had a test performed to make sure that my anemia was not due to some other cause.  No, it was very clear: my kidney was failing to produce the erythropoetin needed to maintain a healthy hemoglobin.

As the years passed, I became more anemic.  And yes, I "adjusted".  Until finally i reached a Hg of 4.  Yes, I was still working.  I would go to work for three hours with a blinding migraine, go in the rest room, throw up, go home and rest for a while, go back to work, go home and go to bed.  My legs were the size of elephant legs.  But there I was, no dialysis, Hg 4, and on my feet!  That was 9 years ago.  My body has no adjusting left in it.  So, I'm glad for you.  But if you're early in your kidney failure/dialysis, you may not understand what I'm saying.  I was like you.  And you may never be like me.  Like I said, the kidneys do many things.  I've told my doctor repeatedly of my past experience (she is a new doctor to me) - but everytime I talk to her it's like she's forgotten everything I said.  Yes my iron levels are good, yes my protein is good.  Part of the problem is the up and down of it.  And that too has to do with dosing.  They cut you off instead of just reducing your dose.

The main problem is, the doctor never said:  I'm not going to let you increase your Hg because I don't think it's good for you.  Instead she lied to me and said she "could not it"

It's true there may be some other problem that makes me tired, but if there is it is related to the Hg.  One time during the last 9 years my hemoglobin went a little over 12.  I went for a very long hike that day and i felt great.  I've never felt that way before or since: so what do YOU think it is now?  It's bad for your heart to try to live for years with a very low hemoglobin.  I'm fine if they keep me at 11, but that's not what they're doing: they're bring me up to 11 then letting me drop below 10.

All I want is to be able to stablize my hemoglobin, perhaps just above 11.  For me that is the only way I can buy my groceries, do my laundry, set up my machine and tolerate my dialysis.  I'm glad for you if you're not at that point in your kidney failure.  I hope you're one of the lucky ones who never gets there.  God bless.  My doctor's still a bitch for lying and calling me and the other patients "you people".

[justme15]

what do you mean 'get to that point in your kidney failure"? my hgb/anemia is already much worse than yours! i hope it doesn't get worse. i have to get blood transfusions almost every 4-6 weeks. i've had 2 bone marrow biopsies which came back normal.  so the hematologist/nephrologist blame it on kidney failure.

i apologize, i was not trying to downplay your concerns. i understand what you're trying to convey.  In fact, I feel my docs have pretty much given up on trying to help my anemia. they just give transfusions as needed. and procrit weekly.

so while you're trying to stabilize yours at 11, I'm constantly trying to think of ways to keep mine above 8.

[fearless]

justme15,

Sorry.  You're definitely "at that point".  I'm sure you don't feel good.

Yes, my hemoglobin was 4, and I was given 2 pints of blood, which brought it up to 7? (I think)  I was actually fine then for a bit.  i wasn't on dialysis yet.  But after 12 years of that level (I'm not sure how long you've been there) I just can't take it anymore.  I'm very very sorry for you.  I can't imagine what it must be like because I have difficulty trying to keep up with the daily physical demands of my life.  i don't have someone that can do things for me so that i can try to cut back a little .  I feel like I've been running a marathon every day for 4 months now, and I'm getting so i just don't want to keep trying.  It's very possible that perhaps my heart isn't working as good anymore so that the anemia just multiplies the effect.

I really just logged back on to apologize.  I know everybody here is trying to be helpful.  I should try to remember that as I say: everybody is different.  Some have it better than I do, but definitely. many have it much worse.  I think my main complaint is that I feel like the doctors should understand that and try to help each of us to live as well as possible.  If there's something that can be done, it needs to be discussed with the patient so that he or she can consider all the implications.

So, I apologize again  everybody.  Thanks for the helpful suggestions.  Just know that you need to learn what's going on for yourself so you can try to get what you feel you need.

and justme15: are you on dialysis?  HAve they tried epogen?  (and I'm assuming that, as others have said, your iron is good?)
I hope every good thing for you.

others:
yes, the doc DID lie - she said that Medicare was preventing her from writing Rx for above 11.  That is just not the truth.

rerun: I've been doing shots in the thigh - 10 years.  prior to that: in the arm at the cancer ward.  Also had it through the lines in-clinic.  You definitely need more when you're doing in-clinic because of blood loss.  Also, at home I've had incidents where I lost some blood because I goofed with a clamp, or had repeated clotting in the lines, so if you don't have the "buffer" of a higherr hemoglobin, again, you end up dropping quite low.

But again, sorry for the angry or ungrateful attitude.  Just having too many problems right now.

Best to all.

[MaryD]

Hang in there, Fearless.  This is the place to rant

 

[justme15]

no need to apologize to anybody! I apologize for hijacking your thread with my own problems, and downplaying yours.

yes, I take procrit(epogen) weekly,and have been for 2-3 years. I am getting my PD catheter placed probably early October.

[Whamo]

Thanks for posting.  Epo sure has improved my quality of life.  On the nod is no way to go through life.   I hope your health improves.  I go through up and downs as one problem leads to another.

[AnnieB]

Fearless, are you stuck with that doctor? If she's not listening to you, maybe you should "fire" her and find someone who WILL listen.

Just my 

Anne

[fearless]

thanks again all

Annie, I have learned that the only other clinic in this town does indeed offer home hemo.  I don't think they did when I started.  I'm going to get some more info tomorrow and find out what their practice (Doctor's practice) is on Hg.  I'm hoping I might be able to make a change in Doctors without relocating.

I'm so glad I came back to this website with this.  I've been too busy trying to just keep up with my home hemo.  I forgot how important it is to seek advice and encouragement from fellow patients.  My family loves me, but there's no way for them to really understand.

thank you!

[amanda100wilson]

please see PM

[Willis]

I could be wrong and people might be lying about this but my PD clinic (Baxter equipment and supplies but bought by Fresenius a few months ago) says that Medicare limits the Hgb levels to 9-10.5. I did much better when my Hgb was closer to 12. Even though I still work (in an office) and am physically active outside of work I really feel like I'm running about 75%. I have read somewhere (probably here on IHD) that the 9-10.5 range is supposed to be an average for all patients within a practice and thus exceptions can be made since there are always going to be some people that do better at lower levels so it would average out.

That argument hasn't worked for me so far and I'm always given the stock response that too much EPO will give me a stroke or heart attack. Well, too much of anything can be harmful and it ticks me off that the studies all these people hide behind appear to have been done against a much different population of patients doing in-center hemo. Then they want to draw conclusions about PD patients that may or may not be true.

To be frank though: it's really all about the money! The Medicare Bundle gives doctors a negative incentive to dispense EPO. EPO used to be a huge profit center, but now every shot they give is that much less money for their mortage and boat payments.

 

[fearless]

Here's the low-down straight from the horses mouth:

http://www.fda.gov/drugs/drugsafety/ucm259639.htm

Basically, the FDA has decreased it's recommended dosage for esa's as described on that page.  The studies they're using to support this recommendation are referenced there also.

From what I could decipher, I don't see that it's warranted to cut people off at 11 and let them drop precipitously, then start dosing - leaving them for weeks feeling bad.  There is also research that shows it's worse to see-saw on your Hg that to keep it steady an ANY point.  So, for those of us who basically have no blood unless we get out epo, following these recommendations is BAD medicine I think.

And, being the cynic that I am, here's my conspiracy theory:

Medicare starts bundling payment.  No incentive to give a reasonable amount of esa to patients.  Humongous lobby from Davita, Fresenius, etc. points FDA to these studies and suggests that maybe, even though they've been mega-dosing people for profit for years, and even though we know that a long-term Hg below 10 has negative consequences, it's time to start gettin' stingy! (for the patient's own good)  Whenever they absolutely cut off the drug, they are preventing the possible loss of profit.

It's horrendous.  And I have absolutely been misled by my doc.  The quality evaluations for these clinics continue to be 10-12 - meaning that if the clinic repeatedly has patients outside that range they may be looked at.  (however, I think they are able to defend the low Hg's now that the FDA recommendations are in place.)

I got the range info from the State Health Board in my State, and it matched what I was told by the region's Renal Care Group person.

So, what your treatment turns out to be may be dependent upon what mine is dependent upon: is your doctor on your side, or the big dialysis company's side?  Because in this game: we are opponents now.  My doc is the new director at my clinic - and seems to be eager to please THEM.  I haven't seen my doc since I learned this info above, and I'm not sure how I'm going to be able to be my typical cooperative self.  I always try to be a facilitator for my own good care.  But when Fresenius took over that got harder and harder.  They've also put a clinical manager in place who really seems to get off on confrontations with patients.  However she is sickeningly "nice" - so she's the kind who says she'll "look into it" or "let me see what my boss says (the invisible "boss") and then never gets back to you and you have to ask her - again and again and again - til you give up, as they were hoping you would do.

I don't know this for sure, but I think the other clinic in my town may have a better protocol.  I don't wanna jinx myself - but maybe I just did!   I'm so eager to change out of this current clinic where I 've been for 9 years, and seen things go from very very good to really suck-y.

AND ANOTHER THING My doctor actually told me  I should write to my congressman.  Then after I realized I didn't know what I would say except that I feel shitty and my doctor says I can't get epogen because Medicare won't let her write an Rx, because they won't pay for it.  So I kept asking her each month different questions to try to understand exactly what the situation was...like, if I want to start a national petition, what should it say?  And every month I left realizing that she never answered my questions!  It was so weird.  She was like a politician: talking and talking and going on about these studies, and ones that Fresenius did and blah blah blah.  She never just said: Fresenius doesn't want me to give you more epogen because the more they can restrict the drug, the less profit they stand to lose.

Actually - this is about keeping people on really low doses: BECAUSE they get reimbursed by the dose.  Lower Hg, lower dose needed to stay there, and bigger profit margin.  And that makes me realize that they're not really playing this game right by cutting people off.  They get paid per dose.  I need big doses after they cut me off.  Oh well.  Idiots. HA HA HA!!!

I'm really counting on finding a doc/clinic who will work closely with me on keeping my Hg somewhere around 11.2.  I would prefer 11.5, but I am cautious about the effects, so I'm hoping just to be able to get my chores done y'know?

blessings to all

[justme15]

just curious-what dose do you take?

[Grumpy-1]

I'm feeling better when I'm at 12. But it took a lot of talking to convince the Drs that 12 for me was good.  Right now, It seeems to be holding steady on its own and I haven't needed a shot in over a month.  And if I need one, I don't see having a problem in getting the clinic to order a vial.  Funny thing to note:  my lab results show that 12 is VERY LOW.  The standard is 16-18.  Hee Hee - guess the lab report format hasn't been changed in a bit.  I love to keep showing that to the Drs and then laughing - not trying to put pressure on them, but in fun.  I have a group of 5 Drs that make the rounds and 3 of the 5 are very open to explaining things and listening to me and willing to go with my thoughts and ideas.  Grumpy

[PatDowns]

  Funny thing to note:  my lab results show that 12 is VERY LOW.  The standard is 16-18.  Hee Hee - guess the lab report format hasn't been changed in a bit.  I love to keep showing that to the Drs and then laughing - not trying to put pressure on them, but in fun.  I have a group of 5 Drs that make the rounds and 3 of the 5 are very open to explaining things and listening to me and willing to go with my thoughts and ideas.  Grumpy

No, the lab format is correct and does not need to be changed.  Ranges - for all blood tests - reflect normal values for those w/o esrd.

Glad you have a neph willing to prescribe dosage which works best.

[fearless]

just me15,
I don't think it would be relevant what dose I'm taking.  It's changed over the years: it changed from pre-Dx to PD to hemo, and it changes every time they put me on it dependent upon how far I dropped and the last dose they were giving me before they cut me off.  It's really screwy. 

And I got some good news today: the other clinic/doc in this town still follows the State/National guidelines, and reduces or increases doses, unless you go above 12.  Also, they have you dose 3x week, and sounds also like they do better monitoring while they're trying to get the right dose.  I'm switching as soon as I can.  After I get my current Hg back up that is

Hg has controlled my life for TOO LONG!!!  I need someone who's gonna help me just try to live whatever life I have here to live.

Also, a little dialysis trivia: men who have a fairly decent Hg when they start dialysis often maintain their ability to produce erythropoeitin.  However, they also typically have a higher Hg, so I don't know that 12 is such a great place to be for a guy.  But it would be good not to need the epo.  We know it's a necessary evil.

cheers all

Also: left this out of my conspiracy theory: the FDA has a revolving door policy just like a lot of other government agencies.  People from private industry get jobs there, and help run the operations and create the policies that in turn affect private industry.  Meaning: the FDA isn't always the best at serving its purpose.  Also, have you noticed the slew of ads for lawyers who want to sue for damages caused by epogen?  They're able to do that because of the new "black box" warning on the drug.  Do you think the trial lawyers have anything to do with this?  No, probably not.  They take advantage of ever drug-gone-bad.
So to those who pooh-pooh conspiracy theories, please accept my apologies - I have so few sources of fun these days!

[MaryD]

Ah!  There's nothing like a good conspiracy theory.  They just get more and more devious and involving.

[jeannea]

MaryD - I liked that. There's no need for a conspiracy theory. The FDA is a government agency. Like all government agencies it is not perfect.

[M3Riddler]

For anyone who's interested:

There is no national restriction on prescribing epogen - but clinics are expected to maintain their patients between 10-12 and are monitored to do so.

My clinic/doctor has basically been lying to me for about 4 months and I'd been thinking about stopping treatment because I really didn't feel my life was liveable anymore.  My hemoglobin drops rapidly without epogen, and comes up slowly.  the clinic cuts off the epogen when the Hg gets above 11, and doesn't start dosing until below 10.8 (which is ridiculous, because everytime it gets cut off it's below 10 before I start getting it again, and then it takes weeks to get back up to 11)

Well, just found out the only reason they're restricting me (and everyone) is because Medicare is bundling the epogen in with everything else, and Fresenius is using studies that show an Hg artificially kept above 12 is bad to deny epogen to patients above 11.  (meanwhile, well-established research also shows that chronic anemia 10-below is related to increase in death)

Um,  I'm dying anyway.  You want me to go ahead and kill myself because I'm too tired to live?  My doctor has denied any change in my prescription even though every month I've been reduced to tears in the office as I try to make her understand what trying to live this way is like.
 
And, y'know, I wasn't meaning this to be a bitch session, but, since it's all anonymous, hey, she's a BITCH!  (referred to us patients as "you people")

PS, I know there's clotting issues and stuff, but before April I was on a higher protocol, and I had no issues with clotting/BP, etc.  I really don't feel that this is being done in my best interest.  Thanks for listening.

Fearless,

The docs must adjust the dosing accordingly.  Epogen has its own side effects like other drugs. Yes, the bundling did have an effect on the amount we are to get and they have to keep it in that range. That is why you stop and start up again. Epogen is a very expensive drug that can produce some serious side effects including heart issues.   It has a blackbox drug warning mean it must be dosed accordingly to the individual.
It is nothing against you personal from the docs.  Having a hemoglobin above 12 is not going to contribute to less or more time on dialysis.
What are your main concerns on why you would like higher doses of epo?  Many other factors contribute to the absorbtion of epo including your iron levels.  Many people also get iron which in terms can be said to "kickstart" the epo to produce the red cells if your iron is low.