anyone having repeated probs with their liver

im so fed up,been on slz for months now,but only 2 a day cos anymore and im sick,went to start mtx when discovered iv an ulcer,so on tabs for that,had my bloods done,and get call of rheumy nurse saying probs again with my liver,so go get more bloods,went and another call,liver still bad,i dont really understand whats happening,when i asked on phone she just said normal liver levels 30,they allow up to 60 for people on strong meds,like us,but mines 170,im none the wiser really,just know that sounds scarey,im back to square one now,just on anti inflammatory tabs,painkillers,morphine patches,im so unbelievably fed up,got permanent swollen ankles and feet,huge,just had spinal surgery,and carpal tunnels done,feel like my life has stopped at 52,i know its self pity,just cant seem to stop it,and cant moan to family as feel like im dragging them down,has anyone else had same probs,does it get better???

5 Replies

  • I don't have the same problems but just wanted to say I feel for you Bunny - it sounds like life is pretty hard for you at the moment. Give yourself plenty of rope for self pity and then hopefully you'll surface and snap into trying to learn more about what is going on and what to do about it. You say you are none the wiser but once you've recovered yourself a little it would be good to become wiser about what is going on I think. Tilda x

  • I'm so sorry u seem to be going through the mill don't you.its so hard when u feel in pain with everything u do isn't it.i hope u feel better soon.i am on my 2 nd week of mtx and hoping to feel a bit better eventually some time soon !!!!im 45 and this time last year I was playing tennis,going gym and socialising,now it's just socialising on coke !€$¥?!#%, well u can see how i feel too lol.what I don't understand is my rf is negative and my anticcp is strong/positive,am I unique hehe?i hope you are on the mend soon with ur liver then u can resume demands again to make u feel so much better.take care xxx

  • No you aren't unique Shell - I'm the opposite to you with RF positive but many more people with RA are Anti-CCP positive. It obviously means something because it's a strong indication you have RA but lots of people with just as severe RA will have everything negative and the only difference is that it's harder to diagnose if you are that way. I suggest you don't get too preoccupied with this and concentrate on staying healthy and doing as much gentle exercise as you can. We are lucky we can tolerate DMARDs unlike Bunny that's all - but perhaps when liver has got back to normal you will be okay to tolerate these drugs better - and meanwhile you could research diet and drinks that might help liver and those that make it worse. My sister has a dodgy liver and she has got it back to normal by avoiding shell fish and other foods for example and she never drinks any alcohol at all now. Tilda x

  • Just remember that these drugs aren't the only drugs available to treat you. If you have had repeated problems with them, and can't take them, then your rheumatologist should be considering moving you onto biologics (anti-tnf) drugs. If they haven't said anything about those, then ask some very strong questions about them. (Why haven't I been offered biologics?) In the UK it seems like folk are made to stick out bad effects of DMARDS for far too long before they offer anti-tnfs, whereas that definitely wouldn't be the case in the US.

  • But in the US they are paying for them if someone is covered by health insurance and if not then many just can't afford them. So that's not ideal either is it? If we weren't ruled by short-termist governments then there would undoubtedly be an overview taken that the long term economic consequences of not offering early RAers Biologics is probably much more severe because of employment issues and benefits and the frequent need for surgery. If all this were taken into account then Biologics would probably seem worth their weight in gold! Tilda x

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