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obsidianom
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« on: September 02, 2013, 08:47:15 AM » |
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I am interested in what EPO doses people are getting and the frequency . Units or mls(if you give the units per ml) are ok.
Any comments on how often you have to change the dose would be interesting too.
Thank you .
Example : my wife is currently on 11,000units per week. The cliinc changes it every 2 weeks it seems as they test the Hg every 2 weeks. They use a sliding scale.
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)
Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
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Rerun
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« Reply #1 on: September 02, 2013, 10:47:23 AM » |
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I want my Hg to be 11. So they try to keep it there for me. If I get up to 12 they stop it. If I get to 11 they start up again. Too much makes my blood thicker and can clot my access. I know they would like that because then it generates work for my Access Surgeon, but I try to keep it at 11. So my units vary.  |
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Sugarlump
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« Reply #2 on: September 02, 2013, 12:20:38 PM » |
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I have 100 mls once a week.
They did try increasing it to three times a wek but it didn't have any effect on my hb.
Having recently had transfusion it is currently 10.
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10 years of half a life 3 years HD 1st transplant Feb 08 failed after 3 months Back to HD 2nd transplant Dec 10 failed after 11 months Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital) Back on HD (not easy to do that third time around) Fighting hard (two years on) to do home HD ... watch this space! Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!! The power of optimism over common sense  |
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UkrainianTracksuit
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« Reply #3 on: September 02, 2013, 12:51:46 PM » |
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I receive 20 mcg shots every week. This prescription has been stable for approximately a year. (Been on EPO for 6 years) On this dosage, my hemoglobin has been in the low range of normal so my renal team views it as acceptable.
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Joe
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« Reply #4 on: September 02, 2013, 01:01:13 PM » |
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I get 8000 units every other week. That keeps my Hb in the 10-11 range. My team checks my values every month with the usual labs.
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Live simply. Love generously. Care deeply. Speak kindly.
Leave the rest to God...
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obsidianom
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« Reply #5 on: September 02, 2013, 01:25:06 PM » |
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I have 100 mls once a week.
They did try increasing it to three times a wek but it didn't have any effect on my hb.
Having recently had transfusion it is currently 10.
Are you sure about that. It seems way high. usually EPO comes as 20,000 units per ml. If you got 100 ml you would be getting 2million units . I think even Lance Armstrong wouldnt dope that much for the Tour De France. |
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Logged
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)
Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
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amanda100wilson
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« Reply #6 on: September 02, 2013, 01:35:44 PM » |
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Sugarlump, Obsidian is right. That doseage sounds off.
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ESRD 22 years
-PD for 18 months
-Transplant 10 years
-PD for 8 years
-NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.
Always look on the bright side of life...
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justme15
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« Reply #7 on: September 02, 2013, 03:22:40 PM » |
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i'm at 200 units of aranesp every 2 weeks. up from 100 units. my hgb last time it was checked was 8.2.
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Sugarlump
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« Reply #8 on: September 03, 2013, 12:38:51 AM » |
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I stand corrected (only got a C in my Maths GCSE!!!!) and metric divisions confuse me. I am having 100 micrograms a week !!!! of Aranesp.  |
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10 years of half a life 3 years HD 1st transplant Feb 08 failed after 3 months Back to HD 2nd transplant Dec 10 failed after 11 months Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital) Back on HD (not easy to do that third time around) Fighting hard (two years on) to do home HD ... watch this space! Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!! The power of optimism over common sense |
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noahvale
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« Reply #9 on: September 03, 2013, 06:43:47 AM » |
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« Last Edit: September 21, 2015, 02:44:23 PM by noahvale »
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billybags
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« Reply #10 on: September 04, 2013, 07:36:27 AM » |
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Husbands HB has dropped to 9.3 so they have upped his dose to 120 micrograms a fortnight !!!! Epoetin Beta . He has been taking 100 for the last 3 months, then his HB dropped making him so tired and breathless.
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noahvale
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« Reply #11 on: September 04, 2013, 10:25:38 AM » |
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« Last Edit: September 21, 2015, 02:33:29 PM by noahvale »
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Jean
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« Reply #12 on: September 05, 2013, 01:22:39 AM » |
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10,000 units of Procrit, just switched to every 3 weeks, was every 2 weeks. Terribly expensive tho and I don't know what I am going to do when I hit " the donut hole" next month or so.
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One day at a time, thats all I can do.
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Sugarlump
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« Reply #13 on: September 05, 2013, 03:17:39 AM » |
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Why is EPO so expensive?
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10 years of half a life 3 years HD 1st transplant Feb 08 failed after 3 months Back to HD 2nd transplant Dec 10 failed after 11 months Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital) Back on HD (not easy to do that third time around) Fighting hard (two years on) to do home HD ... watch this space! Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!! The power of optimism over common sense |
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kporter85db
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« Reply #14 on: September 05, 2013, 06:11:22 AM » |
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It's only available from one company, and they are thieves.
I haven't needed epo for over a year, when I was taking it somehow I managed to build up a supply and now have 6 or 7 full bottles sitting in my fridge.
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May/2010 Sulfa based antibiotics killed my already weakened kidneys, almost
Feb/2011 PD catheter placed
July/2011 Started Peritoneal Dialysis
Nov/2013 Started NxStage 5 days/week
Ken
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jeannea
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« Reply #15 on: September 05, 2013, 08:31:33 AM » |
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The manufacturer of epogen loses patent protection this year so generic versions will be available. When I look it up, there are articles about Amgen closing their epo plant completely and only selling what they have in stock. It's an unusual strategy.
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Jean
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« Reply #16 on: September 05, 2013, 02:29:32 PM » |
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Now THAT is some good news!!!
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One day at a time, thats all I can do.
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skg
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« Reply #17 on: September 05, 2013, 03:59:07 PM » |
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I'm taking aranesp, but have only had it twice. Once, 300 units (mcg?) which brought my hgb up to 12. When it dropped back down to 10 they gave me a dose of 40. I'll see where the hgb is next week, along with whether and what dose they give.
cheers,
skg
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Simon Dog
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« Reply #18 on: September 06, 2013, 07:38:31 AM » |
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Any survey/report of EPO dosages should include the delivery mechanism. EPO delivered subq is about 1/3 more effective than the same dosage delivered iv (including delivery via the dialysis machine)
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Angiepkd
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« Reply #19 on: September 06, 2013, 08:07:38 PM » |
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I get 6000 units, 3 x per week IVP. Seems like a lot, but last hemoglobin labs were 8.2. Also get 200 units of venifer each month at my clinic visit.
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Logged
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol! So far we are doing great!
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obsidianom
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« Reply #20 on: September 08, 2013, 08:06:42 AM » |
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Interesting how in some clinics its aranesp and some epo. Could it be cost? Aranesp lasts longer but which costs more ?
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Logged
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)
Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
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