Post-transplant anaemia

[jenjen]

hi all,

Long time no post! Hope you're all well

I'm writing as I want to know if any people post-transplant suffer with anaemia?

Despite 2.5 years of docs poking, prodding and experimenting with iron tabs and now iron infusions I am still anaemic (hb in the low 9's). It is a bit of a mystery as my transplant is functioning really well and there are no abnormalities in my red blood cells, other than I can't produce enough of them!

I think the next step is EPO, and though I'm reluctant to go on it as I feel it is a massive step back, it'll be nice not to keep struggling through the tiredness.

I just wondered what other people's experiences were of anaemia after transplant?

Cheers,

Jen

[Ailsa]

I'm currently going through the same thing!

The highest my hb got to was 11 and then started to drop down to the 9's. The Tiredness is a killer!

I started with Iron Tablets jan/feb this year and have seen little improvement - my consultant did wonder if it related to MMF or posibly Sirolimus - I am reluctant to change from sirolimus though as its working for me (2 yrs post tx) so we did discuss stopping MMF but it would mean I stay on steriods! But then I think he changed his mind again as last time I saw him he dropped my steriods to 2.5mg! I'm due to see him again on Friday so think I'm going to discuss it more with him - as you I don't understand why when my tx is working fine why I'm not producing enough iron! So far iron infusions haven't been mentioned or EPO!

I even wondered if it was Diet related as I don't eat red meat and looking at my diet - didn't really contain that many iron rich foods - which I have now tried to improve and have even started to eat some red meat!!

[amanda in CA]

Hi, I'm not sure that my Hb was ever very high when i had my tranpslant (the low side of normal, usually, I think). I know that I had epo injections when I was pregnant, but I also seem to remember that there was a point when I needed them when I wasn't. Are there any other precursors for red blood cell formation that you are low on?

[Doolally]

Hi Jen,

I've had low hb for a few years now, its usually around 10, now its dropped to around 9. Iron tablets and infusions haven't helped but docs don't seem to know what's causing it.

I have very heavy periods so they wanted me to have the coil but I'm loathed to have anymore drugs pumped into my body. I doubt that's all there is to it though, as that would only effect me around my period, though I am completely wasted around my period and can't get out of bed! But my blood results show its always low whatever time of the month I have them.

I've never been offered EPO, not sure why. My red blood cell count is low. What exactly does EPO do and why do the docs seem to think its not relevant for me? Is it expensive maybe? Or are there very specific precursors before its given?

I don't actually know what its like to not be/feel anaemic anymore. The way I feel has become normal to me. I am tired all the time but there's other things causing that too so I don't know how much better I'd actually feel if I did have a normal hb. Maybe I'd feel on top of the world for all I know!! People keep telling me I look really pale at the moment. Well, the people who know me well. Everyone else just insists I look really well all the time, as if by saying it to me might make me believe it!! Ha ha silly people!!

Anyway, I've not been much help, but just wanted to say I'm in the same boat (though pre-transplant). If you learn anything useful about what's causing it do post it here. Hope you get to the bottom of it.

[missyh]

I continue to suffer from post transplant anaemia and take eop once a fortnight.
Like others have said there seems to be no cause and my consultant said it just sometimes happens.
With Epo I remain around 12, but as soon as they try to stop the eop, levsl drop dramatically.
I believe my main cause is due to my kidney failure being due to a blood disorder.
Regards
Helen xx

[MatthewHickman]

Hi Jen,
I had my transplant on 1st July. Before the op my Hb levels were 11-12, but since it has fallen to below 9. My consultant isn't too concerned as it is still early days and thinks things will improve over time. Has suggested I try and boost my iron levels through diet; doesn't really want to start me on iron supplements or EPO at this stage.

I get breathless easily, and am a bit frustrated that I don't seem to have any more energy than I did pre-tx, despite now having a great kidney function. Hopefully, I just need to be patient! Can't really complain as everything else is going really well

[jenjen]

thanks all for the replies!

The consultant thinks maybe it's the MMF, but we've cut that down to the lowest we can go now and still no improvement. He'd rather me stay on that (and cut all the steroids) than increase Tacro dose further or switch me off them seen as I'm doing so well

Anyway, glad it's not just me. It seems unexplained post-tx anaemia is relatively common, which is reassuring!

J

[Ailsa]

After seeing my Consultant yesterday he is of the opinion the MMF is the cause of majority of post-tx anemia - the more modern immunesuppressants works so much better than previous that they cause problems for the production of new platelets.

We decided to go down the route of taking me off MMF and keeping me on steriods and see how that goes.

So he upped my steriods back to 5mg and reduced my MMF to 500mg rather than 1000mg. I go back in 5 weeks to see him and see how things are working!

[MatthewHickman]

Hi again,
Just for the record I'm not on MMF, instead on half normal level of tac and a trial drug called Sotrastaurin + 5mg steriods. At clinic this morning and consultant put me onto an iron supplement, wasn't much of a surprise!