CKD and EPO

Kidney and urinary tract
1

Has anyone here had experience of taking EPO?  I have just started as my Hb continued to decline despite iron and folic acid supplements and Vitamin B12 injections.  These imroved my iron store so I am not iron deficient at the moment and my TSAT is 26% and GFR 25%.  However my kidneys are not making enough Erythropoeitin which is the hormone that stimulates the bone marrow to make red blood cells. I have just learned to inject the artificial version of the hormone (EPO) subcutaneously.  It has some risks ( increased BP and risk of heart attack).  I would like to know how long it takes to work (IF it does- as apparently somepeople are EPO resistant).At the moment I am feeling really tired and cold all the time.  it's the stuff athletes take to improve their performance so perhaps I'll be running a marathon soon.

 

2

I take it, no issues here at all...it does what it says on the tin and slowly elevates you HB. You can take a longer acting one injected fortnightly or monthly or there's a faster acting one injected every other day. Both worked well for me.

I'm in my late 30s and one thing I noticed before I realised I had ckd was being out of breath in the gym. EPO brings some form of normality to the way I feel and helps with quality of life in that I had more energy. When my HB crashes I too feel cold and get tired quick and sleepy...it's not fun, but I've had some epic naps though.

3

Hi

I've just started taking the fortnightly injection and noticed a difference almost straight away.

The immediate bounce and spark that I haven't felt in months.

A feeling that you could take on the world as long as you've had 9 hours sleep.

Hope yours works as well.

4

Lyn,  yes two years ago my Hb was around 9.  I was on pretty potent drugs and felt very weak and terrible.  I had one blood transfusion and two infusions of Procrit.  Two years later my Hb is 10.6 (anemia is common with CKD) and Hct is 34.1.  I'm feeling much better.  Good luck.

5

Thanks for that.  It is reassuring to know.  Did your BP go up?

6

Thanks, Caroline.  I'm on a once weekly schedule at the moment. So far have only had one injection.  It is really helpful to hear other people's views.

7

Thanks for replying, Holly. I'm glad it worked for you.

8

I didn't notice any change in my BP...although I am on medication for this as since my kidneys failed my BP has always been an issue.

Introducing EPO hasn't changed anything for me.

9

Hi Lyn, can I ask you , has it had a good effect? I.e. With your energy levels etc. My hb is 13 atm and iron 11. I'm feeling very tired. ( gfr 17)

10

Hi,

I have only had the first one.. I was told it would take 1-2 months to work. If your Hb is 13 it is OK. They don't treat with EPO until it is under 10. Perhaps your tiredness has another cause?  If your GFR is very low, there will be a build up of toxins in your body which will have an effect on you. Have you spoken to your consultant about the tiredness?

11

Thanks Lyn, possibly it's because my iron is pretty low (11) . I have started taking iron tablets again and felt slight improvement. Hopefully it's nothing more sinister as I had prostate cancer 116 months ago .

12

Hi,

I had EPO when my HB dropped below 9, I felt better after about two weeks.  We are different and you may see a drifference quicker or it may take longer.  My BP didn't change it remained stable.  Good luck with that marathon lol