Having been diagnosed with AIH last April, (aged 71 and in previous good health) I have been on cortisone and azathropine which worked well and is gradually being reduced to a target of 5mg a day (on 10mg at the moment). But since I went down to the 10mg dose, I have been feeling very fatigued again especially in the mornings when I can hardly drag myself out of bed. I am eating and sleeping well, my reads are all going in the right direction and my doctor has prescribed Vitamin B12 to help with the general feeling of malaise.
Once I am up and about and doing things, I do tend to feel a bit more lively but I wonder if anyone else has had this problem and if there is a simple solution.
Gertrude
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gertrudestein
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Fatigue is a very common symptoms with liver disease and AIH - it's not known whether it is the condition itself or the meds that cause it. This is a copy (lengthy) of a file produced following one of the expert sessions hosted by AIH UK regarding Fatigue in AIH & is one of the documents available on the AIH Facebook page.
Fatigue in autoimmune hepatitis: the dark side of the moon
Autoimmune hepatitis is an important condition which can cause damage to the liver if not treated, or if treated ineffectively. As the first liver disease for which there was effective treatment focus quite naturally remains on treatment of the disease to prevent progression of the disease, and risk of death or need for transplant. It is becoming increasingly clear, however, that, as is the case with a number of other inflammatory conditions including the other autoimmune liver disease primary biliary cirrhosis(PBC), systemic symptoms are an important additional factor in the disease, and that these can impact significantly on patients’ lives.
In many cases, these symptoms, the most important of which is fatigue, can be the major problem that patients experience. In recent years there has been a move towards a more “holistic” approach to thinking about diseases such AIH and, in particular, the way we approach the treatment of systemic symptoms such as fatigue. There is still, however, a long way to go with a lack of awareness of the importance of such symptoms amongst many doctors, who can tend to focus on disease control to the exclusion of other factors that may be important to patients. As a long term condition it is important that the doctors caring for patients with AIH adopt an approach that will help patients to live their lives to the full. Research in to symptoms in AIH is in its infancy but will be propelled by new funding initiatives such as the UK-‐AIH project funded by the National Institute for Health Research (NIHR) in the UK. This national study is the first to include a systematic study of fatigue in AIH and the factors that may be associated with it.
At present there is no specific therapy for fatigue in AIH, however, important steps can be taken to mitigate it. There are a number of questions about fatigue which we are frequently asked in the clinic.
1. What causes fatigue in AIH? Is it the disease itself? The medication? or both? Evidence in other conditions such as PBC suggests that the disease itself is associated with fatigue, probably through the actions of cytokines (the chemicals the immune system uses to communicate with itself) directly on the brain. It is possible, however, that treatment contributes to fatigue given the systemic side-‐effects that we see with steroid therapy, and the potential for azathioprine to cause anaemia. It is well established, however, that poorly controlled or aggressive AIH is the most symptomatic type of all, and treatment should never be compromised because of concern about potential fatigue side-‐effects (the effect of untreated disease would be worse). One of the goals of the UK-‐AIH project is to develop new approached to therapy which will avoid drugs such as steroids and azathioprine.
2. Why isn’t everyone affected? This is a fascinating question and one that reaches well beyond just AIH. Why do some people with narrowing of their coronary arteries get significant angina and others none at all? In AIH it is likely that true extent of disease activity contributes to individual variation and response, as do, probably, genetic factors determining susceptibility to symptoms (there is evidence that pain susceptibility has a genetic component explaining individual variation). Work in PBC suggests, however, that people can adapt to fatigue and it may be that individuals’ actions in terms of their lifestyle help mitigate the impact of fatigue. The group of people that lack fatigue in AIH are, of course, as important in the study of fatigue in the condition as people who experience fatigue as understanding the difference between the groups will be fundamental to our understanding.
3. What can people do to help themselves? There are several steps that people can take to mitigate the effects of fatigue in AIH. The first and most important is to take the most effective treatment for their condition (as outlined above poorly controlled AIH is the worst in terms of symptoms). Coping strategies are essential given that AIH a long term condition and that people will need, in the absence of a single effective therapy which is the case at present, to adapt their disease and live with it. Pacing yourself is essential, learning to listen to your body and to accept that there will be both good days and bad days is key. Interacting with employers so that they understand the variable nature of the condition (and the fact that people can be severely affected whilst appearing physically normal) is equally important. Understanding employers will be flexible in terms of working patterns. People are normally worse towards the end of the day in terms of fatigue and so adaptation of working patterns in this regard can also be helpful. Work in PBC suggests that, paradoxically given the struggle that people sometimes have with it, exercise is helpful for fatigue and patients with fatigue and AIH should think about a progressive increase in their physical activity levels. Evidence from PBC also suggests that social isolation is important in terms of the degree to which fatigue impacts on people’s lives. Although it sometimes feels difficult because of lack of energy working and keeping up with social circles is really important to living a high quality life.
4. Are there any specific therapies? Sadly not at present, however the emerging strands of research will lead to new therapeutic approaches as is the case in other conditions.
Fatigue in AIH is the dark side of the moon. Liver biochemical abnormality and liver damage responding to steroids is the facet of the disease that everyone sees. Fatigue is the invisible part of the disease which you know is there, but which can so easily be ignored. Awareness that fatigue exists and impacts on the lives of patients is the first step towards effective therapy and national programmes such as UK-‐AIH represent a very real opportunity for us to begin to understand this condition. Once people got to see the dark side of the moon it wasn’t nearly as mysterious as they had originally thought.
The above information was kindly provided by Professor David Jones, Dean of Research and Innovation, Liver Research Group, Newcastle University and Consultant Hepatologist at Freeman Hospital, Newcastle uponTyne, UK.
Thank you AyrshireK for that thorough exposition of the causes and remedies of fatigue in AIH. Any idea of when this report was written and if any progress has been made with their research since?
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