I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: LightLizard on June 08, 2007, 10:20:53 AM
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A few months ago, when my stomach catheter wasn't working, but instead was simply filling up with blood, my bloodwork showed low hemoglobin levels. I was given injections of aranesp.
After the surgery that repaired the problem, my hemoglobin levels normalised. Yesterday, a representative of aranesp called to say that they were holding a shipment of it for me and wondered when I was going to pick it up. My understanding was that the reason I had been given it in the first place was to support and enhance my hemoglobin levels. Seeing my hemoglobin has been showing normal, for the past few bloodtests, why would I need it now?
I hate the idea of sticking myself with a needle! I've been that way my whole life, really. And the only time I gave in was about 18 months ago, when my doctor told me I had to take interferon injections or die. I insisted on the 'pens' - because I could not face using a traditional syringe. After the sixth shot (sixth week) I developed a gut bleed that nearly killed me.
Are the aranesp distributors so hard up for business that they'll try to force it on people that don't need it?
chickenlizard
love
~LL~
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Now that Doctor Jack is out of prison I may have to give him a call.
Really, I have no idea what the solution is.
In these cases I resorting to quoting lyrics to Oldies that come to mind.
"Nowhere to run to baby, nowhere to hide...."
I guess you have to be over 50 to get that one?
Sorry wish I could help.
.........bd
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If your hemoglobin and hematocrit are normal, there is no reason to take aranesp or anything like it. Also, insurance will not pay for it if there is no medical need for it.
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Hemoglobin levels are very rarely normal among renal patients, and you do not mention what your values are now. The problem with both aranesp and erythropoeitin is that if enough of either is given to bring the hemoglobin levels of the patient up to normal, there is a danger of clotting and stroke, so renal patients are given only inadequate amounts and kept anemic. There is a constant battle among the nephrologists, the FDA, the federal dialysis funders, the patients, and the manufacturers of epo and aranesp over what the maximum safe hemoglobin achieved with these drugs is, and of course the manufacturers want it to be as high as possible to make more money, while the patients want a higher level as well because many would prefer more energy, regardless of the clotting risk. The stand-off is now such that the manufacturers want hemoglobin levels to go up to 130, while the nephrologists and the government want it no higher than 120. I insisted on 125 as a compromise, and could clearly feel the difference from how I felt at a target of 120.
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My hemoglobin is 134, from my most recent bloodwork. It was considerably lower when I was having problems with my belly catheter, which, as I said, was constantly filled with blood, which is a good indication that I was bleeding internally, which may explain why my hemo levels were lower then.
Since the problem was repaired and the internal bleeding stopped, my hemo levels have risen to their current level, which I am very happy with. So, I don't feel that I need aranesp at this point.
By the way, here in Canada, aranesp is covered by our medical plan, as are all essential meds.
thanks
LL
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Run it past your neph first. He/She will tell you if they think you need it.
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I used to have Aranesp on a regular basis , once a week. When i had it i couldnt face the thought of injecting myself , so my gp used to do it. I always had it injected in my arm, but i do believe you can have stomach and top of leg as well , but not for me. I found no problems with it in my arm.
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My hemoglobin is 134, from my most recent bloodwork. It was considerably lower when I was having problems with my belly catheter, which, as I said, was constantly filled with blood, which is a good indication that I was bleeding internally, which may explain why my hemo levels were lower then.
Since the problem was repaired and the internal bleeding stopped, my hemo levels have risen to their current level, which I am very happy with. So, I don't feel that I need aranesp at this point.
By the way, here in Canada, aranesp is covered by our medical plan, as are all essential meds.
thanks
LL
You do need to see your doctor but if your level is 134 I highly doubt your doctor would want to keep you on aranesp. They may keep you on a very small dose to keep the level up. I wouldnt accept the aranesp order until you speak to the doctor asap.
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Definitely talk to your doctor. I want my aranasep, even if I hafta stick myself! I do feel better with the extra iron in me,
I need that energy!
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I am unfamiliar with converting Canadian HGB numbers with US, but the Aranesp should be given intermittently to maintain your HGB values in a certain range - US 11-12%. If you don't receive the maintenance Aranesp your HGB will most likely drop. To my knowledge Aranesp is given every three weeks or so, I'd take it else your HGB will probably drop.
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well, seeing my hemoglobin levels have stayed the same for the past few blood tests, and i haven't been using aranesp, my neph says i am not in need of it at this point.
i've had too many bad reactions to needles to be anything but relieved.
love
~LL~
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Ignore the rep - they don't have a clue about your labs!
I'm on 60 mcg, as needed, which means I only take it when my weekly lab shows up at under 13. My center tries to keep everyone between 11 and 13.