no epo if over 11 - is this national now or just my clinic?

[fearless]

Desert Dancer,
I very much appreciate the links and your thorough replies.
It's apparent that your kidneys are still producing erythropoeitin.  Mine are not and have not for a dozen years.  When I get epo, I have blood.  When i don't, I have no blood.  My Hg goes up and down because of the parameters for administration.  But it takes much longer for it to climb up than it does for it to fall down.  So, for a brief time I am able to accomplish various tasks, and then for a much longer time I am not.  So, although I don't like to risk having a stroke, at this point I'm willing to do it.

I don't like that my doctor, who has the information and can talk to me about what I want to do, is not allowed to give me a dosage that will allow me to continue to live a life worth living.  When my hemoglobin gets down near 10, I have symptoms like irregular heartbeat and slight dizziness.  Also, when my Hg is above 11, I am able to add exercise to my activities - this sort of activity wasn't factored into the studies.  Also, in the studies, the upper levels that were studied were above "low normal" - and that's not what 11-12 even is.  Two of the three studies were done on patients who were not on dialysis.   It's very likely that those patients were still producing adequate erythropoeitin to force their Hg above the target when they were given higher doses of epo.

I think these studies are flawed.  We've known for years that using epo to artificially raise Hg and hematocrit above the levels it would normally be in any given person can cause strokes and heart attacks.  Increased hematocrit raises blood pressure (more red blood cells trying to fit in the vessels> higher pressure.

I'm angry that one more tool of normalcy has been taken away from me.  And worse still, I feel overwhelmed at the prospect of trying to fight the bureaucracy to reclaim help.  I feel too tired.

[Lillupie]

My personal gut feeling on this is that they keep lowering the standard because it is cheaper and they want to cut cost every way possible. Lower hq bar= less epo= less money being spent on epo. I truely believe that. I may be wrong. I tend to not like studies because you dont know who is behind the study. The results can be played with to prove a point that they want to make up. If Im going to try to prove a point, Im going to focus more on the study results that will side with me.

That may be so that epo increases your blood pressure then causes strokes and heart attacks. But does anyone on here really know of anyone who actually had a heart attack because they had high blood pressure straight from getting epo?? I have given myself epo over the last 4 years and it hasnt caused my blood pressure to be any higher then normal.
 I guess Im wrong because I dont conduct my studies and Im also being paid to conduct studies to prove a point.
Its not fair and I feel sorry for guys because they need a higher HG themselves.
just my 

Lisa

[Willis]

My personal gut feeling on this is that they keep lowering the standard because it is cheaper and they want to cut cost every way possible. Lower hq bar= less epo= less money being spent on epo. I truely believe that. I may be wrong. I tend to not like studies because you dont know who is behind the study. The results can be played with to prove a point that they want to make up. If Im going to try to prove a point, Im going to focus more on the study results that will side with me.

 

If the BOTTOM range of normal for HgB is 13 (at least for adult males as printed out on my lab results) then what is different just because I'm a dialysis patient, especially so since I work full-time and exercise heavily 10-12 hours per week? Yes, I might concede that getting Epo during hemodialysis might be a greater concern (I'm on CCPD). And of course someone with coronary disease or other specific health issues might be at greater risk. Isn't that supposed to be the doctor's job to figure out instead of some bureaucrat at Medicare? It has to be about the money...

BTW, the range was just lowered to 9-10.5. Oh, jump for joy everyone...we are getting screwed again. I guess I should just be grateful I'm still alive even if the government thinks just being alive but not able to LIVE is the goal if it saves money. (I admit I'd be dead now without Medicare because I sure couldn't pay the $60,000 per month my clinic gets!)

 

[amanda100wilson]

The blood gets thicker as the Hb gets higher, hence the increased risks of heart attack and stroke and also the risk to clotting off a fistula.  If I rememer rightly these issues were first highlighted when it was given to cancer patients.  Mind you, in the past I wasn't that great at remembering to take my epo, I kept getting told about how a low Hb is bad for my heart.  Go figure.

[Desert Dancer]

Two quick corrections here, if you please:

Isn't that supposed to be the doctor's job to figure out instead of some bureaucrat at Medicare?

Medicare has nothing to do with this. This was a recommendation from the FDA... AFTER Amgen voluntarily (!) lowered the range and terminated their studies early due to alarmingly high death rates.

BTW, the range was just lowered to 9-10.5.

Actually the officially recommended range is 10-11, though your clinic may have its own parameters (my clinic's is 10-11.5 and I disregard their upper limit).

 

[bleija]

just a natural way to increase hemoglobin. i know it sounds crazy but a woman that I worked with told me that broccoli raises hemoglobin, i thought she was nuts, but ever since i have been eating more my hemoglobin runs 12 to 13, and i havnt had epo in so long the vials i had expired. i dnt know if there is any relevance but for me it works... now my iron thats another swtory... but dnt do it if your on potassim restriction, bad idea. I am on lasix so washes out my K so no worries... my on prob is that damn phosohorus... thts the only number that was out of range this month, and my calscium was low, but changed my sensipar... hope this helps... i hate takin epo, i hae shots

[Lillupie]

hmm i might try that. Going to be hard because broccoli is one veggie i do not like. lol

[Willis]

Two quick corrections here, if you please:

Isn't that supposed to be the doctor's job to figure out instead of some bureaucrat at Medicare?

Medicare has nothing to do with this. This was a recommendation from the FDA... AFTER Amgen voluntarily (!) lowered the range and terminated their studies early due to alarmingly high death rates.

BTW, the range was just lowered to 9-10.5.

Actually the officially recommended range is 10-11, though your clinic may have its own parameters (my clinic's is 10-11.5 and I disregard their upper limit).

Thank you for the correction. I did read somewhere after I posted it that is was the FDA and not Medicare.

And it's interesting that the "official" range is 10-11. My "independent" clinic was just bought out by Fresenius (though they PROMISE, just PROMISE that we'll still be using Baxter equipment and supplies as long as we want). Now all of a sudden I'm told that the range is 9-10.5 and there's nothing they (my clinic) can do about it. I could use that extra 0.5! My last HgB count was 10.8--so no EPO for me.

 

[Desert Dancer]

Thank you for the correction. I did read somewhere after I posted it that is was the FDA and not Medicare.

The confusion is understandable. The FDA recommendations refer to the upper limit of Hgb but I do believe there is an ongoing discussion about Medicare eliminating the lower limit. To me the latter just reeks of cost savings and nothing more and I strongly disagree with it.

And it's interesting that the "official" range is 10-11. My "independent" clinic was just bought out by Fresenius (though they PROMISE, just PROMISE that we'll still be using Baxter equipment and supplies as long as we want). Now all of a sudden I'm told that the range is 9-10.5 and there's nothing they (my clinic) can do about it. I could use that extra 0.5! My last HgB count was 10.8--so no EPO for me.

Perhaps print out the recommendations from Amgen and the FDA and show them the official range?

Last month my Hgb was 10.9 and my nurse told me to continue with the Epo. Uh, NO. I stopped taking it. Three weeks later my Hgb was 12.2 and she told me to hold the Epo. I informed her that I had stopped it when my Hgb reached 10.9 (it was noted on all my flowsheets, guess she doesn't look at them). Can you imagine if I'd followed her instructions? My Hgb probably would have been north of 13, 14 or more!

She didn't say anything but I could tell she was pissed. I just love how these clinics think their 'policy' should override science. Luckily I don't want a transplant so they don't have the 'non-compliance' threat to hold over my head.

[fearless]

Amgen placed new prescription recommendations on it's labels, and the FDA followed suit.  But it IS Medicare that's limiting the reimbursement for patients whose Hg's are over 11. 
So: welcome to the brave new world: Your doctor wants to keep your Hg at 11.5?  Sorry, medicare won't pay for it.  So, it's official, the GOVERNMENT is deciding what's good for the patient, NOT the doctor.  YES IT'S ABOUT MONEY!  Have you noticed the brand new surge of lawyers advertising to sue for patients who've been "injured" by epogen?  I'm highly suspect of the way the results of this research have been used to re-write government reimbursement policy.  It reeks of big corporate greed and lobbyists.

No one is really examining the validity of these studies for various kinds of renal patients.  And there is no accounting for those of us who become disabled by anemia, even though there are many people who seem to "adjust".

[Desert Dancer]

So: welcome to the brave new world: Your doctor wants to keep your Hg at 11.5?  Sorry, medicare won't pay for it.

My clinic's official range is 10 -11.5; somehow I don't think they're giving away Epo for free.

[fearless]

Desert Dancer,

What clinic are you at? (if you don't mind)  I may join you!

But I believe the CMS payment has just been limited to maintenance at or below 11 and above 10.  I would REALLY be happy to find out that it's 11.5, because then all I'll have to do is put the screws to my doc instead of the federal government!   

(thanks DD)

[Desert Dancer]

Desert Dancer,

What clinic are you at? (if you don't mind)  I may join you!

But I believe the CMS payment has just been limited to maintenance at or below 11 and above 10.  I would REALLY be happy to find out that it's 11.5, because then all I'll have to do is put the screws to my doc instead of the federal government!   

(thanks DD)

It's a DaVita clinic and they get very pissed when I refuse to go above 11. I have to think it's a corporate-wide policy, though I could be wrong. My clinic is very big on parroting 'corporate policy' at me.

[amanda100wilson]

"Until we understand the mechanism for the risk observed with ESA use, we should seek to use the lowest ESA dose required to meet the clinical goals of the patient."

Like Fearless, i suffer from palpitations, exhaustion and the inability to,function normally when my Hb falls.  My clinical goas are to overcome these so that I can attempt to live as normal a life as possible.

I was on EPO way before it was available for use in the US and even before it was marketed in the UK.  I was
Prescribed it when it was only available on a named-patient basis as part of its pre-marketing research.

I was also on heavy doses during pregnancy, without which,,I suspect, I would not have had a successful outcome.

To me, the benefits outweigh the risks.  If the problem is due to dosing methods, then that issue certainly needs to be addressed.  I find it extremely irritating that clinics chase the guideline figures, overshoot it and then cold-turkey me from EPO completely until it plummets below the guideline minimum, just to repeat this over and over again.  I can chug along quite happily on a low level, but when my Hb is allowed to drop suddenly, as it does when administered in this manner, then I get symptomatic.   In my view the lowest dose possbile should be given that mitigates the symptoms of anaemia, tailoring it to suit the individual but, most importantly avoiding swings that the article that you have quoted, Desert Dancer, may be one of the issues associated with adverse outcomes.

[fearless]

Amanda,

once again, my experience mirrors yours exactly.

I'm encouraged that DD's DaVita clinic has a range up to 11.5.  Perhaps Fresenius is simply placing their upper limit at 11 to avoid having people go over 11.5, because it seems the reimbursement is based on staying within the range.   For me they will have a hard time meeting the lower end, since my HG also plummets below that when my epo is held.  Perhaps with others reacting the same way, that is why providers might seek to drop the lower limit.   That way it would be very easy to ALWAYS be reimbursed for every drop of epo that's dispensed.   Perhaps still further, there may be a grand unrealized experiment:  we know people have strokes and heart attacks when their Hg is kept artificially high.  Let's see how many heart attacks they have when we keep them just above transfusion level.  (but as you say, isn't that already known?)

This has effected me so profoundly the last couple weeks (with my Hg dropping quickly from 11 to 9.5) - heart pounding, skipping beats, etc. - as you mentioned the dangers of the fluctuations) that right now it's simply about keeping my peace of mind, as I have absolutely no control over the short-term future, and I have no idea if or when I, or anyone else will be able to bring about a change. 

[lainiepop]

Hi, im not currently on dialysis but my gfr is 8.8%, they're holding off as im having a live donor transplant in 8wks from my dad. They said id have to have epo but havent bothered as im so close to transplant. They said anything under 8 and id have transfusion during op. Funny thing is my iron was 9.5 and then 7  weeks later is now 10.3! I never feel ill with low hg anyway, think my bodys just adapted cos it was permanently low when i was pregnant (my daughters 8 mths). So anyway i didn't want my iron to drop so started taking spatone (hope u have it in the states?), midwives recommended it to me, its a liquid iron u can take 1-2x daily and is better for absorption. I took it along with true food easy iron capsules hoping to keep iron level steady and am amazed its gone up so maybe if u hate the epo try spatone? Children can have it so its not bad for system or anything, and obviously pregnant women too. Docs were surprised it had gone up , is apparently quite unheard of at this stage without epo so give it a try!

[cassandra]

dear Iainiepop Maybe you it is an idea to ask for a bloodtransfusion from your dad, so you won't increase antibodies. I had that with my TX from my dad in the 80's, cos operating on you with a low Hg is no good.
Just a suggestion

good luck already, love Cas

[lainiepop]

Hi Cassandra, i actually suggested to the transplant team what u just said 2 mths ago when my hg was down at 9. They refuted this and said its not something they do, and if i desperately needed a transfusion after the op it wouldn't matter once the kidney was in, wouldn't affect the antibodies or rejection as this is what i was worried about. However she said they do not tranfuse you at all unless hg goes below 8, they'd rather just give a few iron infusions after the surgery. But now its gone up to over 10, i don't think they're thinking bout infusions at all as when i get dads kidney they say hg will go up over 11 anyway. I think this is standard in the UK as when i had my daughter 9mths ago i had a c-section where i lost a litre of blood, iron was 9, no transfusion until under 8, the midwives wouldnt even give me an iron infusion as i wasn't showing any symptoms of anemia and was coping fine! The kidney specialists got one organised for me later which put it up to 11.7. Funnily enough i asked the nephs about a blood tranfusion during the section and they said they didn't want me to have a transufusion unless hg dropped to 4!!! This was because obviously transfusions raise antibodies and they knew id need a transplant soonish, they said id just have to have a shed load of iron infusions, luckily this didn't happen! So i don't know really....i totally get what you're saying cos its what i thought myself! Guess different hospitals have different policies too! x

[noahvale]

^