Hello all. I just wanted to share my experience and ask if there is anyone out there with a similar profile? In the 1990s I had a lot of symptoms which are typical of autoimmune disease. I finally got a test which revealed primary immune deficiency, and then pushed to get seen by a rheumatologist. Further tests showed a low level of lupus antibodies and quite a high level of AMA M2. The rheumatologist said that I had 'the PBC antibody' - he meant the AMA M2 which was detected at quite a high level. I was told at that point by a doc at a well known London hospital that I probably had 5 years before needing a transplant! - even though my liver function tests were normal. I believed him because I had terrible physical exhaustion. 26 years later, I've had a fibroscan and my liver is still within the normal range - there's no stiffness, no fibrosis. My liver function tests are normal still. They always have been. However, ever since I had a truly awful flu like illness in my twenties, I have had no physical stamina at all. After I first got ill, I literally spent 18 months in bed. Prior to the viral illness I was a county-level swimmer and tennis player. I did get partly better after a few years but was still always physically wrecked, very easily, it was like being sent into old age in my 20s.
I've never had any explanation and it's been very hard to survive. I had COVID last year followed by whooping cough and bouts of pneumonia and now I'm back almost where I was when I first got ill. I see a London hospital which refuses to accept that the fatigue is related in any way to the AMA M2 antibody. They just ignore my physical state completely. I suppose at least we have a term for this now - medical gaslighting - but that doesn't help a lot.
Any insights please, or similar experience? I do get mild lupus symptoms from time to time, but they are minor and quite infrequent. The physical incapacity never goes away though.
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What a journey for you! first of all, thanks for sharing all of it with us. Doctors who give patients a 'time line' until they die should quit practicing in my opinion. You have a + AMA, normal liver enzymes, and fatigue.... how often have you had your liver enzymes repeated? I had a transplant surgeon tell me once that people with + AMA and normal enzymes will eventually get a rise in enzymes. She felt those folks should be on Urso just due to the + AMA. Have you spoken with them about just taking Urso? Some find the fatigue is helped by it.
Hi thanks for responding. They have refused to prescribe URSO or anything else. At my last hospital appointment, I told the liver doctor that I had crushing exhaustion, had had to stop working as a result and had almost no money left. I explained how I had a 1.5 hour drive to work, and had fallen asleep at the wheel at 7.30am on a dual carriageway, where everyone drives nose-to-tail at 70mph. By the time desperate horn-blaring drivers behind and alongside me managed to wake me - lorry sounded an airhorn - I had slowed to around 20mph and was very close to causing a pile up. This doctor then wrote a letter to my GP which says 'She says she is well. She denies any symptoms of liver disease'. It occurs to me that they just make up the letters at the end of the day, having failed to listen to anything you have said or to take any notes. They still get paid whatever happens to you, so why bother. Thank you for your good wishes.
That is just crazy..he is totally ignoring you and your symptoms. No other doctor is an option to for to see? This is almost negligent on his part by his 'note' about you being 'well'. Urso couldn't hurt a thing... Where is the hepatologist located that you could see? I would hope that would make a difference for you.
Docs who simply ignore any physical symptoms like your fatigue... ugh!!! If it was them it would be a whole different thought process. I do know from my own experience how consuming that fatigue can be. Do you see an endocrinologist for the Lupus? I would think the fatigue is made worse by that. Have you brought up the thought of just taking the Urso?
I just wanted to send you support and can relate to quite a bit of what you wrote. You have been through so much. I developed fibromyalgia at the age of 13 after a viral illness that could have been Epstein Barr but was never definitively confirmed. I had a lot of pain and fatigue from that age but it is a stigmatised condition in the medical profession and I’ve had some upsetting encounters with doctors from a teenager onwards, including the medical gaslighting you describe.
I was diagnosed with PBC from positive AMAs in 2020 aged 45. I suspect I’d had it a few years. My liver readings were elevated and I started Urso but I was a non-responder. In the latter half of 2022 my liver readings normalised thanks to a naturopath who did advanced microbiome testing and prescribed supplements based on the results. It also improved my fatigue and cognitive issues. However, while the liver readings remained normal the fatigue and cognitive issues came back. So I can relate to what you say about the presence of fatigue even with normal liver readings. My liver specialist started me on Ocaliva and that has really helped the fatigue and cognitive issues and that has been the case for a year now. So it’s possible with the right treatment those issues could improve for you too. I agree with Donna that it may be worth trying Urso which could help the fatigue. And failing that there may be other options. I wonder if you could try a liver specialist who shows a willingness to hear you about the fatigue?
I hope you can find some good support. I have found, time and time again, I’ve had to do my own research and seek out people who seem like they will be helpful and persevere until I find them. I know that can be so exhausting though when already struggling with fatigue and for such a long time too. Take good care 🙏
I also went from being extremely active to unable to leave the house after a serious flu like infection in 2016. It was 8 months before I could venture as far as the bench 50m from our front door without worrying I wouldn’t be able to get home again and I couldn’t speak more then 3 words without my voice disappearing. MERS was mentioned (we lived in Middle East) but I was never actually tested. I struggled with extreme tiredness for 6 years before 2 years ago my LFTs went up and last year I was finally diagnosed with PBC.
I still have bouts of extreme fatigue. Even on good days I can do less than I would expect of someone of my age and general health. I do think some doctors dismiss extreme exhaustion because It’s a very difficult thing to explain and has no symptoms you can quantify or demonstrate. My voice has never returned to normal and sometimes fails completely.
Occasionally I get up after 8 hours of sleep and 5 minutes later I am completely wiped out from putting on jeans and a t shirt and have to sit down for half an hour to recover. When I eventually make it downstairs there is no way I will even attempt to get up there again until night.
I have found that my eating habits impact the frequency of my bad days. Processed food has a serious effect on my energy levels and the cleaner I eat the further apart my off days seem to be, so I really try to eat well and do what I can when I can. Unfortunately, when I am struggling, the last thing I want to do is cook from scratch so I keep soups and smoothies in the freezer that I can pull out and shove in the microwave or blender when I need to so I don’t resort to junk and compound the problem!
You are not alone in this and I think it’s trial and error to see if you can find things that give you relief as much as possible. I change my days to match my energy, because my energy often won’t let me plan my days .
Dear Flid, I relate to what you describe. Before Ocaliva I was having to lie down for 7-8 hours in the day. I could only just get up to make a very simple dinner. I frequently could not do my dishes which would sit there for 3 days. I’d had fatigue for years from fibromyalgia, but with PBC it was different and I’d feel very ill and almost like I had a neurological infection with my brain feeling inflamed is the best way I can describe it. I feel the fatigue issues need so much more research and understanding. I’m similar with food, the healthier the better. I feel for you and hope you can get some helpful support xx
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+ AMA; Slightly elevated ALT
Positive AMA M2
AMA blood work question
Do I have PBC
Liver Biopsy Negative can it still be PBC?
