Liver Clinic and interesting comment

Had my first visit to the liver clinic to see how my poor old liver is faring, apparently not good and need a liver biopsy to see what is going on before they start treatment. Interesting that I learn from the Gastroenterologist that they are thinking of treating me with biologics and says that I have RA. I say they told me inflammatory arthritis. I have no idea what this means but at least I am one step closer to proper diagnosis and maybe some treatment so I can maybe feel like a part of the human race again. Gotta say she was mighty angry that no one had referred me last year when I first started going to the hospital.

18 Replies

  • Looks like there's some progress at last though still a lot of confusion. It's great to hear you sounding a bit more optimistic.

    Biologics are used to treat all sorts of inflammatory arthritis & rheumys do sometimes hedge their bets on diagnosis for good reasons - RA and Psoriatic Arthritis for example can look very similar & there's a lot of overlap with treatment. I think for some people 'inflammatory arthritis' is a proper diagnosis until something emerges to indicate a more specific diagnosis. But I know there's absolutely no excuse for the all the delay & faffing around you've had to put up with.

    What happens now? I recall you have a rheumy appointment in August - do you still have to wait till then to check out what you've heard from the Gastroenterologist with your rheumy? Or could you find out sooner?

    Luce x

  • well I got the shock of my life the hospital called late this arvo to book me in for Friday!! Said the Doc had been down with piles of paperwork and pushed it through. Slightly concerned now, as I stopped and had 7 vials of blood taken on the way out after dropping off the biopsy form, wonder what it showed? Anyway to answer your question no I have to wait until mid August for rheumy appt so won't know until then. She was quite concerned that a) it had taken so long to refer me and b) no one had followed up on the anemia side of things for ages. I just shrugged and said well it has been my experience all along and for the first 5 months I was told it was all in my head apparently depression and anxiety- hello so not that! How;s things with you?

  • Hi someonesmother, Don't spend your time worrying, look on the positive side,you're getting the help you need and mid August isn't that far away. I don't take any meds for my IA,I have had to learn to live with it for now but who knows one day something will turn up,it always does.xx

  • Yes August isn't that far away now, but it has been a very frustrating 15 months of pushing, cajoling and advocating to be listened to.

  • It must just be such a relief to see things moving at last. At least it looks as if your rheumy has been keeping your case active, it'll be interesting to see what happens in August.

    I'm just a bit fed up at the moment & trying to work out what I can do to improve matters. Thunderstorms are meant to be on the way maybe that'll liven me up! x

  • I have been ringing them to ask what has happened with things may be why they finally did something.

    Oh Luce it is a hard and frustrating journey we are on. One step forward etc... I am hoping you can work out whatever it is that is making things hard at the moment. I love a good thunderstorm we have some awesome ones in Oz!

  • I'm having much more pain than usual, just low-level stuff but it's draining. Without pain I can put this illness to the back of my mind but pain & mobility issues are a constant reminder. I feel more cheerful today though.

    I'm so glad that your perseverance seems to have paid off. x

  • so sorry for you, I do understand not having adequate pain relief. So hoping I can have something so I can feel human again i have forgotten what it is like not to be consumed by pain. I have a brain like a sieve what are you on?

  • I don't have bad pain at all - just the nagging kind. And it usually comes with increased stiffness, feeling tired & generally yukky etc. so I hardly ever take painkillers on the assumption that they'd just make me feel worse in some ways. I take Mtx & Sulphasalazine & they have been working pretty well up to a point. Hope you get some effective pain relief - you won't know yourself! x

  • Can you take pain relief on those meds? I am ignorant of all this as yet. I can tell you I would be I just couldn't work otherwise

  • Oh yes, as far as I know painkillers are fine with all the main RA meds. If I had really bad pain I'd take them too.

  • Oh Ok just wondered why you don't if it is making your life a misery. I would take something to take the edge off and have a bit of quality.

  • How did you get your fatty liver problems diagnosed and have you been on Methotrexate or Leflunomide yet - if so are they the reason that your liver has become a problem do you think? Sorry I'm not very focused just now having just returned from a long journey and being in a bit of a post MTX fog (as well as a thick fog outside!). But I don't think it matters too much whether you have been diagnosed with inflammatory arthritis or with RA because all the drug treatments are roughly the same and sometimes they just wait to see which type of IA emerges as time wears on. So you do have a diagnosis and I wouldn't get too hung up on which type as things can change.

    I'm exactly the same way as Luce is about taking painkillers but I had the most rotten headache all day yesterday so I took the full quota of Paracetamol and of Ibuprofen as well as injecting my MTX and I woke feeling much improved in all ways. I think those of us who experience low level pain sometimes don't even realise we are in pain until we take an anti-inflammatory and it lifts for a while. I try to avoid pain meds because I want them to be very effective when I do need them and because I have acid reflux/ ulcer issues and I feel they are best avoided where possible. Paracetamol does also impact on the liver I believe? But I did learn a lesson last night about how much low level pain I'm often in without even being aware of it. Perhaps you should have a day of pain meds and a NSAID and see how it affects you Luce - it might be like having a mini holiday now and again? X

  • PS and let us know the results of the liver biopsy - good luck Someonesmother. x

  • I will and thank you

  • Hi TildaT I have jad high liver levels for the past 12ish months and not sure why but I have had some adverse reactions to antibiotics and things in the past 12ish months so may be that. I have not had an official diagnosis as yet as I have only seen rheumy once and have only talked on phone on a couple of occasions in the past 5 months and asked him what I had he was cagey adn said IA as we aren't sure yet. I do take panadol osteo as I wouldn't be abel to work fulltime if I didn't take something and yes it could be that as I have been taking it for a year now I try and only take it twice a day. I understand the being in pain and not realizing it as when I take the PO and it kicks in a little bit of the pain lifts. I can't take prednisone, nasaids or iburpofen I also have reflux, hiatus hernia and GORD so my stomach is touchy.I agree a holiday form pain would be great.

  • Hi someonesmother, I wish I knew more about you but since the site upgrade I can't access your past posts. Your story is similar to mine in that I was told I had " Inflammatory Arthritis but as I couldn't tolerate the meds i was dismissed by my Rheumy. Since then I have been told i have fatty liver and I have had my gallbladder removed. Good luck hope you get sorted soon.x

  • I have no idea how I will go on any meds so intolerant pr allergic to so much not only me but rheumys are scared of what will happen. Have to wait and see I suppose. Doc was concerned I have gone beyond just fatty liver will find out after biopsy on Friday I guess. How do you cope? I couldn't work fulltime if I took nothing I am living on panadol osteo it just takes the edge off long enough to make it through to the end of the work day ATM.

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