Back again!


I was on here a few years back as 'inkedup' -unfortunately due to some online bulling i came off.

I have Scleroderma, Sjogren's, Hypothyroidism and osteoarthritis. I,ve been AMA pos for many years, but no one wanted to help me, and as i have 3 other autoimmune probs, i knew i was heading for issues.

Anyway, over the past year my Alk phos has gone up, and my GGT has increased to double the upper limit. My recent LFT showed another increase in my Alk Phos, and now my Alanine Aminotransferase is elevated. At my insistence, i have been referred to St James in Leeds.

I am now struggling to work, i have fatigue, but i just cant sleep, 3 hours a night usually. I feel as if i,m in a play looking in on myself at the mo. What is worrying me the most ( i don't have any itching!) is that sometimes after eating i get terrible abdo pains, and it's pretty horrible. Does anyone else have these issues?


8 Replies

  • I remember you from way back then, I thought you were being seen by Chapel Allerton or somewhere in Leeds?? Maybe I am mistaken. Seems like you are going down a similar path to mine, Sclero, Sjogren's and now PBC. I don't have any itching either but I am on Urso for the Liver disease and that seems to help a lot. Really, right now the Systemic Sclerosis is the biggest problem and my local hospital is doing everything they can to keep me going. There is nothing to treat the Sclerosis of course but my symptoms can be alleviated and I am fortunate not to have any joint involvement. When I go through stages of not being able to sleep I go back to one Amitriptyline at bed time. Seems to work. The fatigue is overwhelming and there is no way I could consider trying to work outside home. Perhaps it is time for you to apply for disability.

  • Hi, You have a good memory! I do go to Chapel Allerton for the Scleroderma. Why are you feeling so unwell, are you on steroids or anything? I have just had some minor salivary glands necrotise on the roof of my mouth, and have had to have it cut out. Its very rare, and we're wondering if it is caused by the raynauds -very strange disease.

    I will have to stop work, who aren't very sympathetic. Its just worrying about finances. Its like being heavily penalised for something that is not of your making! The stomach pain is worrying me, i have stopped alcohol use etc. Guess i,ll just have to wait and see the specialists! x

  • Well, I wish I knew really why I am so exhausted. It's probably just the Sclero. Had a few longish hospital stays in the past 4 years and every time I come home 10 kg or so lighter and weak as a kitten. Gradually get a bit better but never the same as before. Right now I am bleeding internally, a result of the relentless effects of the stiffening of my organs I guess. Consequently I am Anaemic a lot of the time. Had a few blood transfusions and Iron infusions the last couple of years as well as colonoscopies, gastroscopies and even an enteroscopy. Such is life with these disorders.

  • I,m sorry to hear that. I am studying aromatherapy at the moment, and in Chinese medicine, autoimmune issues (as we already know) are often triggered by exposure to a pathogen. Interestingly, what they say is that the pathogen is still there in the body, so the immune system is still on overdrive.

    However, if we have an immune system which is always on overdrive, then it is like fighting the flu, but with little end in sight. Such fun!!

  • Hello. Could I ask whether you were ama positive before you had any of the liver issues. I ask because I have the ama antibody but do not have any other liver issues. My Gp etc therefore I don't think it's PBC. I know I don't feel well not I don't have typical symptoms instead I experience random electric shock like pain in my body and also get stiffness and swelling in my joints. I wondered if any of these were symptoms that you had with the other non liver autoimmune conditions that you have. Many thanks

  • Hi,

    I was AMA positive for 20 years prior to the last year. It wasn't that the doctors didnt feel that i might not develop PBC, they just did not want to do a thing about it, until my LFT's increased.I also had an elevation in Igm, which is a marker of PBC, so perhaps you should ask for this to be done? Sounds daft to me -why wait until there's damage? I haven't been well for a year, so this also ties in with some of the PBC issues, but it has been hard to define with the other stuff. What i can say, is that i am a very busy person, and i just can't do it all anymore!

    I have Osteoarthritis developing in most of my joints, so my joints are sore anyway! (I,m aged 47). Its the stomach pain, that's worrying me the most presently.

  • Hello MissusTee.

    I remember you back on here originally. I just thought perhaps you'd not posted or been non the site awhile. sorry to read that you are struggling at the moment.

    As far as I understand with PBC some of us acquire the itching, some of us don't regardless of how we are with the PBC. I am still itching if you remember me from that far back as a lot on this site associate me as 'the itcher'!

    I find these days I cannot eat large meals later in the day (evening meal) but I have put that down to being in my early 50s now. I know in the evening if I have felt I have been a bit greedy I can actually feel the food if I bend over at the waist. I think possibly with the PBC we can acquire weak stomach muscles. I can still do manual chores and activities but I now wonder if it is not a wise thing to do.

    I know the only thing I can suggest to perhaps ease the situation whilst you are waiting to see an hospital specialist is to perhaps try to eat little and often and note how that is making you feel.

    One thing that crosses my mind is that you haven't recently started taking any new medication(s) that are perhaps causing this.

  • Hi,

    Nice to hear from you again! I did read (somewhere!) that pain after eating with PBC can be because of certain foods, or because there is not enough bile secretion -as its going the wrong way -to digest fats. For me the morning is worse, so i,m really put off eating breakfast. But i think you're right, little and often is probably best -its just getting 'caught out' if you're eating out, at work etc, and i have to lie down when it happens until it passes.

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