I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: lynnrlpd1 on April 13, 2014, 02:54:56 PM
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For a year now have been going to the clinic to get my shot once a week. Was thinking about learning to do it myself. How many people give themselves their shots and how much do you get. I'm getting 20,000 units a week and that doesn't seem to be working as I had to get blood yesterday. They've been upping my shot every month in units but I am assumming my kidneys are really starting to decline?
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How's your iron, and your ferritin levels? If my ferritin isn't high like 750 or so, the EPO won't increase my HB. I have always ' shot ' myself, and I take 3 x 4000 units.
Love, Cas
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I found it was really easy to give myself the shots. As my nurse said, "grab the flab and jab".
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My dose varies week to week, currently at 23,000 (usually it's lower). When I get to 20,000 or more I split to dose and do it over two days. I have two RNs in my house (wife and kid), so I use their services for the shots, but would do it myself if they did not want to do it. Many diabetics do it twice a day; it should be easy for us renal folks to do it once or twice week.
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i give myself shots of Aranesp weekly. it's pretty simple and painless. the units are different. i think its 150 units a week.
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I typically did 10000 units a week, and I gave them to myself. Like cattle kid said, grab the flab and jab.
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This is a tricky area. I wouldn't assume that your kidneys are getting worse. I was receiving 40,000 units/week about a month or so ago. Labs showed that my Hgb was at 12, so my units were decreased although I was feeling good. I was also given a course of iron (Venifer) over 3 sessions.
The next time my labs were checked, I was around 10 when I had gotten my second dose of iron. Energy level was down a bit. My EPO dosage was modified slightly.
Following my final iron session, my Hgb reading was down to 8.5. I was having issues with fatigue and lethargy. I have been returned to 40,000 units a week. Already starting to feel better.
BTW, I do not administer my own EPO. I've been offered the chance, but don't feel comfortable doing it.
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One of the problems with EPO is the "Hgb rollercoaster". Clinics are measured on the number of patients with a hemoglobin level ABOVE 12. There is no minimum floor for hemoglobin levels, at least from a reporting perspective.
The way it usually seems to work is this: patient has a low hemoglobin (less than 12). Patient is given EPO and their hemoglobin levels rise SLOWLY. Hemoglobin is measured again and hemoglobin rises closer to 12. Because clinic is afraid of patient hemoglobin level going over 12, the patient is told to hold EPO or is not given EPO in clinic. Patient's hemoglobin drops like a ROCK. Patient feels poorly, tired, unable to function. Patient is put back on EPO and the cycle begins again.
The truth is, too much EPO is not a good thing. It turns the blood into sludge. Hence why professional bicycle racers (among other athletes) have died of heart attacks at a young age after abusing EPO for increased performance. But for those on dialysis, EPO is a double-edged sword.
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I'm on NeoRecormon twice once or twice a week. Couldn't tolerate Aranesp. One is EPO beta, the other EPO alpha!
Its an incredibly fine needle, can be given on the machine or subcutaneously in the stomach or leg. VERY fine needle. Swab the area, inject, less than a minute.
The main thing I've found is to mark on the calender that I've HAD it so I don't accidentally take it twice!
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As my nurse said, "grab the flab and jab".
haha I love it! You can never go wrong doing that!