Help -- Freaking out a little bit

[skg]

So, on the morning when my angiogram was cancelled, my hemoglobin was a bit lower than it had been before -- 9.x

The on-call neph decided to give me a shot of aranesp for that. Seemed reasonable enough -- I'd discussed the possibility of an ESA with my neph the month before.

So I saw the neph today to check my creatinine and decide what to do about the angiogram (basically, my creatinine was still 5.6 and if I want a transplant I have to get the angiogram, so I'm rescheduling it and will probably be getting the angiogram with my creatinine at or around 5.6 -- which they cancelled the procedure for on Tuesday morning. Yuck.)

In reviewing that morning, we went over the meds I'd been given. My neph said something about a "massive dose". I didn't really pick up on it then, and hadn't noticed anything myself when I was reading about aranesp. I did noticed that he had noted a plan for a 25mcg dose of aranesp in August.

So this evening, I looked up dosing -- most everything I can find has big warning labels "Use the lowest possible dose .... blah, blah, blah". And what appears to be the "standard" starting dose is 0.45mcg/kg ... being a math whiz, with tons of graduate work in mathematics, I can figure out that at 80kg, that would put my dose at 36mcg. I've found some other stuff that mentioned starting at 0.75mcg/kg which would put the dose at 60mcg.

The dose I was given was 300mcg (subcutaneously) -- that seems like an awful lot .... Especially given warnings that say "use the lowest possible dose" and "increased mortality, myocardial infarction, stroke, ...". So -- should I be freaking out? My hemoglobin was back over 10 this morning (I can't remember the decimal places on Tuesday or this morning, but it easily could be that it has risen 1g/dL in 3days when the directions say to reduce or interrupt the treatment if it rises 1g/dL in 2weeks -- so more freaking out.)

So, please tell me all the reasons I shouldn't be freaking out! Not much I can do about a shot which was administered three days ago. Best I've come up with so far is that tour de france riders probably take much larger doses of this or something similar all the time! (So, now, maybe I am finally in the same class as tour de france riders. wow!) Or more seriously, that the increased risk was as part of a long term study, and probably wouldn't get those negative effects from a single shot. Right?!

I'm also thinking I don't want to have anything to do with the dr. who prescribed this (not part of my transplant team, but part of the same system). If you can, please tell me why this was a reasonable thing for the Dr. to have done. (The same Dr. told me that the lower hemoglobin was another sign that I was dehydrated. Which didn't make sense to me and appears to be exactly backwards.)

Anyway -- just writing this out has helped a little, but I would love any reassuring comments from some of you folks with lots more experience with aranesp than I have.



thanks,
skg

[Henry P Snicklesnorter]

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[billybags]

My husbands HB was very low for 5months. It was down to 6 and he was so tired all the time.  He was on arenespo 80mgs, taking it every 10 days. He is on CAPD. Iron transfusion was talked about but the neph was not inclined to do this as it might no last long. Anemia nurse said that arenespo takes along time to work. They have now increased the dose to 100mg every two weeks and his HB has gone up to just over 10. He feels so much better. As I recall iron stores also have alot to do with it. He was also very anemic and now he is eating a bit better, he was told to ignore the renal diet and eat what he wants. this seems to be working. I think it is a balancing act with all these drugs. Hope you feel better soon.

[skg]

I Would be asking questions. 300mcg does seem to me to be a very large dose. (Are you sure it was that much?)


One of the things we all learn, (and you seem to be proactive in this regard, ) is that we each need to learn as much as we can about our disease, symptoms and treatments. Having done so, we then need to ask questions Before allowing anything to be administered.


My understanding of the relationship between Hb and hydration agrees with yours. What I would say though, is that if you were indeed dehydrated, then your actual Hb may well have been lower than 9.

I do have a printed discharge instruction sheet that has the order for aranesp written out. Told my wife to hang on to it.

So my hemoglobin may have been lower than the 9 -- which means it may be going up even faster than 1g/dL in 3 days. (I guess that means my iron levels were good!)

I knew what an ESA was and I knew there were risks to correcting hemoglobin too much -- but I didn't think to check that I was being given a reasonable dose at the time. Next time, I will. I hope. Not at my best when I've been laying there hooked up to an IV waiting for hours (after learning my creatinine had jumped up and that they were canceling a procedure which was required for the transplant evaluation).

[cariad]

300 mcg is definitely a fair size dose, but I should think if you were going to have an adverse event from it, it would have happened by now. Not sure that counts as reassuring.

If your kidneys have stopped producing sufficient erythropoietin, then you don't get the gentle pulses as needed that your system is accustomed to, and instead your system is well flooded with EPO, then runs out of it and must be flooded again. Therein lies the danger. However, I weighed about half what you weigh when I was on Aranesp and if I recall correctly, I was on 100mcg every fortnight. It may have even been higher for a brief period.

I was told that the real trouble comes when you continue to take Aranesp when your Hb comes back to a normal range. Insurance companies apparently won't even pay for Aranesp if your Hb was 11 or over when you got the jab. A GP told me that those deaths were occurring with people who were getting these shots with Hb as high as 13. Aranesp is still quite a new drug in the scheme of things. Add to this the fact that there used to be a huge financial incentive for dialysis clinics to over-prescribe Aranesp, plus Amgen's general evil nature, and it is not surprising that they found out about these dangers the hard way. I guess I'm lucky in that I was not on dialysis in those days (I had my first dose in 2005, right as it was released) and my system was so relentlessly anaemic that it was a battle for me just to get to 10. Currently, the pendulum has swung the other direction and patients are being under-prescribed Aranesp because dialysis clinics now lose money on higher doses. At least that seems to be what dialyzors are reporting.

I'd probably lose the doctor. I agree with Henry that it's important to insist on having all questions answered before getting a drug administered, but it is also crucial to take into account the difference between American medical culture and everywhere else in the world (near as I can tell). I mean no criticism of Henry nor anyone else when I say this, but if you have not lived through the American medical experience, you really cannot appreciate what a dis-empowering nightmare it can be. Most doctors make it pretty clear that they would rather not hear your opinion on your own treatment.

[billybags]

In my post I quoted that my husdand was taking 100mg of  arenespo. I must correct my self. I meant 100 micromegs or MCG. Sorry.