The first day of AGW held a liver focus.  PSC was discussed specifically in small sections, however, it was interesting listening to some broader elements of liver health also.  I will try to present below some of the lessons in the context of PSC – remembering this day was A LOT to unpack and very medically focussed. These are simply some of my interpreted  take aways. 

The first presentation was on the emerging new liver crisis of Non Alcoholic Fatty Liver Disease (NAFLD) and Non Alcoholic Steoatohepatitis (NASH). These are relevant to our PSC community as they can still occur in a liver affected by PSC, and further complicate or progress liver damage.  For more information on the basics of the diseases please go to NASH vs NAFLD: What You Need to Know – Fatty Liver Disease . At around 28%  here in Australia we have close to the highest rates worldwide. These high rates mean there is a lot of research going into theses diseases. Data from the US indicates that NASH is the most common cause of liver transplant. While the causes of NAFLD and NASH are not fully clear, nor is it clear why some people develop one over the other, treatment in part is certainly aiming for a healthy weight and healthy diet to reduce the fatty deposits in the liver.  A variety of medications are being researched to change and even reverse liver damage.

The second liver session definitely took a rather sombre tone – looking at how liver cirrhosis is a complicating factor for hospital admissions of any cause. This did not look at PSC, but rather the general population with cirrhosis, which is predominantly those with alcoholic liver disease, followed by NASH, so we need to be cautious in interpreting this information for our PSC community.   That said, those with PSC would unfortunately not be immune to the development of Acute on Chronic Liver failure – a condition where someone with stable cirrhosis can develop a sudden onset of severe decompensated liver failure. Not surprisingly those with higher MELD and higher liver fibrosis scores were more at risk of this. With a simple algorithm identified for risk factors, this is leading doctors to better preventions and treatments even before liver transplant.

A lot of work is being done on the use of non invasive liver tests and how they can help predict disease course and be used to best treat disease. To date there is no single test to give us all the information we need, however, better understanding of how they can work together is emerging.  There was a large range of algorithms, biomarkers and tests that have been developed, generally in association to specific disease causes.  The Enhanced Liver Fibrosis Score (ELF), fibroscan score and MR elastography are all tools to help doctors understand the health of a liver and form some predictions about disease course, but need to be interpreted within the context of the disease itself and multiple other components. 

An interesting presentation on the experience of a number of patients at Melbourne’s Alfred Hospital talked about the impact that IV albumin had on patients requiring regular diuretics, large volume paracentesis (LVP)  and hospitalisation.  Although only a small number of patients were included in this series, it was still interesting that the total number of hospital admissions and total number of LPS’s needed significantly dropped for the patients receiving regular (it wasn’t stated in the report how often or the volumes) IV albumin as an outpatient.

A couple of other things touched on briefly was the low follow up on bone density management, something that all with PSC should be aware of and discussing your doctors to determine the required frequency of having DEXA scans, and the management for wherever your bone density is sitting currently.  Along with this was the fact that few people with low Vit D are actually on a replacement.  The best form of replacement for you is best discussed with your doctors, but can range to increasing some sunshine (of course, being conscious of sun exposure risks) , to various oral supplements, through to IM injections.

For us the key presentation for this session was on PSC…so I am going to write that up as a separate blog….stay tuned!

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