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Has anyone in the Uk had EPO?

Posted , 4 users are following.

LynQ
LynQ

Good Morning All,

I have had trouble remaining anaemic free with CKD Stage 4.  I take an iron supplement and folic acid and  have also had a course of Vitamin B12 injections. However, I am still somewhat anaemic.  My consultant tells me this is an absorbtion problem as my iron store is high and if my HB gets lower than 10, he will prescribe EPO.  Has anyone else had this treatment?  If so what was your Hb when it was prescribed?  And, are there significant side effects? Would be grateful for your thoughts on this.

0 likes, 8 replies

8 Replies

  • john85166
    john85166 LynQ

    Posted

    Hi Lyn

    I started with aranesp every three weeks. Self injection into the thigh. Its like a pen with a push button start. No side effects. Makes you feel a little stronger. I was prescribed when my haemoglobin fell below 100.

    • LynQ
      LynQ john85166

      Posted

      Many thanks for this, John. It is helpful to hear of other people's experience.  Sometimes you feel a little alone in all this.  My consultant is quite hard to try to have a proper conversation with.  Glad you didn't get side effects!

    • john85166
      john85166 LynQ

      Posted

      More like always feel alone rather than just sometimes
  • Polly65
    Polly65 LynQ

    Posted

    Hi Lyn, we are in UK & my 21yr old son who is on 19% kidney function injects epo once a month, also Aranesp.  He injects into his stomach as he's skinny with not much fat. When first diagnosed with kidney failure 2 years ago he was terrified of needles, but after injecting with the help of the nurse at our health centre he will now do it himself at home.  He has no side effects.  He does have to have iron infusion to top his levels up for the epo to work off usually about every 4-6 months.  Good luck.

    • LynQ
      LynQ Polly65

      Posted

      Hi Polly,

      Thanks for your helpful reply.  I find the forum really good for things like this! I hope your son continues to be OK.

  • helen54849
    helen54849 LynQ

    Posted

    Hi,

    How long have you been taking iron tablets for, the reason I ask is I was put on them for three months (any longer is bad apparently so my neph says) they told me if my iron didn't recover after three months on the tablets then it wouldn't.  It didn't and so I had an iron infusion (I have only needed two a couple of years apart).  I am on EPO I didn't need it for a bit now I am back on it.  I inject it into my stomach, you are supposed to grab a bit of skin this is where I struggle as I haven't much loose skin.  I do it each month but have regular bloods done as when my drops it does so quickly therefore I have a fridge full of various strengths (it has to be kept in the fridge).  I have had no side effects but it does take a couple of weeks to kick in and make you feel better.  They give mine when I am less then 12 I am currently 10 with 10 of EPO every 4 weeks.

    • LynQ
      LynQ helen54849

      Posted

      Thanks for this.  I have been taking iron for a very long time- at least two years.  It did improve my iron store and Hb for a while.  Then the b fell again and I was given a course of vitamin B12 injections and concurrent folic acid. This made no difference at first until 3 months later when I had the first Vitamin B12 top up.  This increased my Hb to 10.7, Ferritin to 502 and Tsat to 27%.  My consultant has not mentioned iron infusions but said that EPO will not be given until HB falls to under 10. 
    • helen54849
      helen54849 LynQ

      Posted

      Hi,

      I would ask for a second opinion as EPO doesn't work on its own, it has to be given with iron infudions.  You will feel so much better if the meds are given correctly.  I have never had B12 or folic acid for iron issues either.  I would ask if there is a different consultant you could speak with.  You shouldn't be on iron for that long it isn't good.  Sadly the Drs don't always get it right.  I would perhaps ask for a copy of your medical records you can do this in writing under the data protection act 1998 that may chivvy them into action.  Its not nice if your bloods are not right this I know.  I seem to be lucky enough to have a good team who are on the ball.  If mine falls below 10 they are on the phone telling me what to do same with iron I am called in straight away.  Keep on at them and don't excpet the first answer you know you better than anyone. x

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