I haven't been on here for a while as nothing has progressed with my liver investigations other than the Consultant deciding not to put me on steroids( autoimmune is the thinking) as my LFT's have been reducing spontaneously. I did find this a bit frustrating but realise I shouldn't complain as it is a positive. I think it's more that I have early chirrosis and no idea why.
However, I have been having aches and pains and back in May my hands were very sore and have remained swollen and painful ever since, I also have had sore arms and shoulders and been struggling to lift anything heavy and when I drive it takes a while to 'unravel' from the stiffness I experience from sitting still.I went to an Osteopath who thought the shoulders and arms were a mechanical problem but couldn't explain the hands. When I queried this with the consultants they told me it isn't the liver causing it which is why I went to an Osteopath. I then decided to go to my GP again as had been before to be tested for rheumatism and arthritis both of which were negative but I know what I'm feeling isn't right.
My GP thinks it could be polymyalgia rheumatica and I must say having read up on the condition it fits my symptoms. I went for an xray on my shoulders and more blood tests yesterday so hopefully will find out soon.
This is an autoimmune disease and I now wonder if I have had it for some time and it is this that has caused the scarring on my liver and the consultants should maybe have listened closer to what I was saying about aches and pains.
Hope you are all as well as can be x
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Teatotal
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Hi Teatotal. I am on Steroids for PMR - Prednisolone. I also have Liver Disease. I have had PMR since about September last year when I could not walk without pain and it does affect my shoulders and arms.
PMR is an autoimmune disease but I do not think it affects the liver.
The scarring of your liver is caused by Fibrosis or Cirrhosis as far as I am aware. My liver has been scarred for over forty years,
Fibrosis is scarring of the liver. As more and more of the liver becomes scarred the level of fibrosis can be said to have increased and is measured in several stages. Cirrhosis is just the final stage of fibrosis when almost the entire liver is made up of scar tissue.
So both the stages of fibrosis fibrosis and cirrhosis describe the level of scarring - they are not causes of the scarring.
Scarring of the liver is caused by prolonged inflammation (this inflammation is actually called hepatitis regardless of what causes it). The causes of inflammation (hepatitis) range from alcohol to fatty liver to viruses (often called Hepatitis viruses because they give you hepatitis) and auto-immune causes - as well as others.
Teetotal,
Sorry to hear of your issues. Just out of interest, where are you being treated? Also I'm going to go back and look at your previous posts but I'm not clear - do you have clearly diagnosed AIH or have they not come to that conclusion firmly yet?
I am being treated at Calderdale Royal in Halifax.
There is no clear diagnosis in fact the last letter from my consultation clearly states not diagnostic of AIH. It seems to be that I score a bit on the scale for that but not conclusive, my interpretation
My ALT was 884 when it was discovered and last reading was down to 232 without any treatment, so I am now on 2 weekly bloods through to my next appointment in September when once again we will sit down and discuss what next.
You are right Mister X the scarring is caused by inflammation . When I was first diagnosed in 1991 I was told I had Cirrhosis. I have sine been diagnosed with Fibrosis. I am thinking they moved the goal posts.
I know the scarring is chirrosis but so far, after 6 months of investigation there is no diagnosis as to what caused it in the first place , so far it is a non diagnosis affair though they were leaning towards autoimmune hepatitis which is why I wonder if I have had PMR (although that isn't confirmed yet either) for some time and this has what has attacked my liver.
I had a biopsy and this didn't give a diagnosis either other than the amount of scarring.
My aches and pains do seem to be on the way out as it happens as my hand and arms are less painful than they have been,
HI Teatotal, yes I do know the cause of my scarring, unfortunately. In 1973 I had a baby, left too long in labour,baby yanked out. Lots of stitches. One week later had haemmorhage. Lost about 14 pints. Afterwards I was not well, doctor thought 'it was all in mind.'Long story so I cut it short. In 1991 'Give Blood' people came to my works. I innocently gave blood. 'Thanks but no thanks' they said in a letter about one week later. I had Hepatitis C. My GP actually apologised to me. He explained the docs did not know about HCV before 1991. I had been given bad blood in 1973. About 2 years ago I had Liver C (rare Lymphoma) had operation etc. All because I have Hep C because of blood transfusion with bad blood. That is the cause of my scarring.
I have to tell you that I have never had problems with LFT results and yet I have liver disease. Glad you are feeling better.
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