body not responding to the epo

[sullidog]

My body doesn't seem to be responding to the epo. Over the past couple months my hg has been low. It first started out at 10 then for the past couple months it was stuck at 9.1. My doctor has been raising the dosage but makes no difference. He is going to do it again. I've been dizzy and tired, and even faint at dialysis even though they aren't pulling fluid. I also get dizzy for no reason. I've requested a transfusion but my doctor says it's not low enough for that. My hg is at 9.1 still. Any ideas?
Troy

[greg10]

If you are a "normal" athlete, I would suggest you train at a high altitude to increase your HGb level, unfortunately that is probably not practical in your case.  This altitude effect actually has implication for a dialysis patient on ESA.  In general , patient at higher altitude are less likely to be resistant to EPO.  Are you on supplementary oxygen?  I don't suppose there are many mountains around Ohio?

The Effect of Altitude on Dosing and Response to Erythropoietin in ESRD

Higher altitude was associated with smaller EPO doses and higher hematocrit levels. For example, compared with patients at sea level, patients living above 6000 ft received 19% less EPO (12.9 versus 15.9 thousand units/wk) but had hematocrit levels 1.1 points higher (35.7% versus 34.6%). These associations were found within subgroups defined by sex, race, age, calendar time, cause of ESRD, and dialysis center profit status, and persisted after adjustment for various potential confounding factors. Furthermore, resistance to EPO decreased with elevation. Our results suggest that ESRD patients living at high altitude either increase endogenous EPO production or respond better to endogenous and exogenous EPO.

http://jasn.asnjournals.org/content/19/7/1389.full

[okarol]

Are you taking iron too? Taking iron along with other medications such as epoetin alfa (erythropoietin, EPO, Epogen, Procrit) can help build red blood cells and reverse anemia in people with kidney problems.

[billybags]

Get them to check your iron, my husbands iron has been going down for about 4 weeks. I have access to his monthly bloods when they are taken and noticed this, they poohed it at first but I was right. He is now  having 3 iron infusions.

[paul.karen]

Agree with the above two ladies.  Epo is useless unless you body can make red blood cells.  Us dialysis patients lose alot of iron.  Your neph should know this kinda scary he hasnt said anything to you about it.  Unless he has been checking your iron all along and it is ok.

Ask him about it.  And iron is best to get through an IV drip.  Takes abot an hour to an hour and a half but it with epo/arnesp should raise your HG.

I cant belive they have let your HG get so low.

[RedHairedGirl]

I read your post and wanted to scream .......FIRE your nephrologist!!   Not all patients are the same though many neph's like to put us all in the same box and the "one size fits all" crap they condemn us to.

Before becoming ill with kidney disease my normal hemoglobin was almost a 15.0 so being kept below a 13.0 I become extremely symptomatic. My heart will pound constantly, severe burning and aching muscles from the lack of oxygen rich blood in my body and constant on and off dizziness and extreme fatigue to the point it is difficult to get out of a chair.  Not to mention I cannot take more than ten steps without losing my breath. 

I went through 4 nephrologists before finding one who would help me. Most nephrologists belong to groups and they answer to the administrator of these large groups who don’t give a crap about the patients all they care about is making money. Independent nephrologist’s only answers to their conscience and in most cases will go the extra mile for you and do what is best for you.  Hunt until you find one who will listen to you and help you. No one knows your body as well as you do and no one will be more of an advocate for what you truly need, then you.

The new guidelines on hemoglobin are to hold renal patients no higher than a 12.0 but that is not adequate for all patients. They based this on some ridiculous study done in England with a form of Procrit not even used in the US and was done on elder cancer patients.  How convenient for the insurance companies to find an excuse to lower their cost and lower the hemoglobin of renal patients saving them millions of dollars in Procrit/Epogen/Aranesp payments. 

My nephrologists transfuses me when at times I reach a 9.5 because I become so acutely symptomatic. He also has me receiving large doses of Epogen twice at week after dialysis during the flush back so the EPO does not run through the dialyzer where it becomes diluted.  And your neph should also be running labs (Iron and TIBC) to check your iron levels, and your ferratin.  Your body cannot make blood without adequate iron levels. 

Trust me I know how you are feeling because before finding my dream nephrologist my hemoglobin has been as low as a 7.0 and I was rushed to the hospital because I collapsed where the idiot ER doctor did nothing except run more labs which made me weaker of course and sent me back to my nephrologist! 

If your nephrologist wants to wait until you reach that magic ”one size fits all” number for a transfusion which is 7.0 RUN do not walk away from him or her and find a nephrologist with your best interest at heart.

I wish you well …..
RedHairedGirl
 

[Tracy]

Seems like they lowered the minimum again to like lower than 12.  I get iron and epogen at each treatment, until it reaches the "one size fits all" level.  Then they cut it off till monthly  labs are drawn again.  Usually, I need both again.

Good Luck! 

[KICKSTART]

As other people have said 'epo' will not work without sufficient iron stores. So firstly get your iron levels checked out. You may find you get iron then for a few weeks. If you are on hemo? they will run it alongside your dialysis, ideally it should be given in the last half hour of treatment but if you have never had it before they might let the iron take longer to go through. I can have iv iron in 20 mins. Also whats your bp ? Only asking because if you diastolic (bottom figure) is over a 100 it renders epo or aranesp useless.

[Willis]

My heart will pound constantly, severe burning and aching muscles from the lack of oxygen rich blood in my body and constant on and off dizziness and extreme fatigue to the point it is difficult to get out of a chair.  Not to mention I cannot take more than ten steps without losing my breath.

Wow...sounds like me. I'm not on dialysis yet but GFR is about 7, so will be soon. Only by intense effort do I force myself to exercise, which I'm still doing for 3-5hrs 3 times a week. But I really start to feel like a slug if I don't exercise.

Someone please give me the things to look for on my blood panel results so I can understand the medical jargon. Is there anything short of expensive drugs to help this? I don't have insurance and that's why I never started EPO or similar treatments. If I get on Medicare will they cover this?
 

[paul.karen]

Willis look for your hemoglobin #'s and yuour iron lvl's

Yes medicare will cover all aspects of dialysis.  Well 80% anyhows.  Includes dialysis/labs/epo/arnesp and dialysis itself along with neph visits.

Unless the bundling program has changed a few things.?

How often are you having labs drawn?  Do you have a neph?

[Willis]

How often are you having labs drawn?  Do you have a neph?

Lately almost every week. I do have a neph and I feel quite confident in him. He's been monitoring me very closely lately and I've already started down the path to go on the transplant list and to get started on dialysis. I've already met with my transplant center and started down their checklist. Will have my first meeting with the dialysis coordinator this coming Thursday.

The big issue with EPO treatments has been the cost. I just can't afford them without insurance. I think this issue has been moved to the back burner a bit with all the other stuff. Until I read this post I didn't connect those symptoms with the anemia as opposed to just losing my kidney function in general.

 

[paul.karen]

I not sure what mode of dialysis you are planning on doing.  But if you do an at home type dialysis your medicare would start almost immediatly.  If you do incenter dialysis i think it takes about 3 months to get medicare.

Just FYI.

Hopefully your HG and iron are good and your just running low to kidney funtion.  (boy that sounds sad huh). 

Also there is no set time to start dialysis, it is pretty much the patient who says when they are ready.  it might be time.  The good news is your happy with your neph.  And he is getting weekly lab work.  Which is another indication the time is near.  next time you see him talk about your iron and HG.

[Willis]

I not sure what mode of dialysis you are planning on doing.

I had to start the discussion about PD, but my neph thinks that CCPD is a good option. Seems the default is in-center HD unless the patient brings up other options. I'm sure that's where the money is...

Sorry for the hijack...will now return the discussion back to the OP. 

 

[cookie2008]

Talk to ur neph about iv iron during dailysis, mine is real low also and thats what I am getting in another 2 weeks I get another dose.

[paris]

Everyone is so right about your iron reserves.  If you body is iron poor, it can't support the red blood cells.  And they have changed the target numbers.  Use to be a woman's target was between 12 - 16.  Now, even 9 is considered ok.  Now, with a transplant, my hemoglobin is always between 9.5 and 10.5. They all are pleased with the level, so I am too.   But, I would love to be at 12 again!    Iron infusions are a good way to raise iron levels.    I hope you find an answer for you.

[sullidog]

They say they changed the target to 10.0. Still 9.1 is low for me considering mine is always above 12. My neph since he hired a nurse practitioner, he hardley has no idea what goes on with his patients unless the practitioner updates him which is only when she's unsure about something or when we see him once a month.
My iron stores are good.