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PBC and Covid-19
From the PBC Foundation Medical Advisory Board, 15th October 2020
As the Covid pandemic continues to affect us all, the guidance is changing.
Links for information include those below:
Department of Health and Social Care and Public Health England:
Health Protection Scotland
Welsh Government: (https://gov.wales/coronavirus-covid-19)
Northern Ireland: (https://www.health-ni.gov.uk/coronavirus)
THE PBC FOUNDATION STRONGLY URGES ALL PEOPLE WITH PBC AND THEIR FAMILIES TO FOLLOW THE NATIONAL GUIDELINES
Guidelines vary between the four UK nations so please check those which apply to you.
Comments from the PBC Foundation
There is a great spectrum of disease amongst people with PBC: most will have early disease and the liver is functioning normally. Others will have advanced fibrosis, and some may have cirrhosis. Others will have had a transplant which may be associated with recurrence of PBC in the graft. Some will be taking immunosuppressive medication (such as prednisolone, azathioprine, mycophenolate, cyclosporine or tacrolimus). Some will have also other conditions such as diabetes or lung disease. There is some evidence that the outcome of Covid infection in those with advanced cirrhosis from any cause is worse than in those without cirrhosis. Advanced cirrhosis is characterised by jaundice, ascites or other signs or symptoms of decompensation. There is less strong evidence that those who are post-transplant may have worse outcomes when infected.
Maintaining good mental health remains a key issue. This is important for all but those with PBC have additional stresses and we strongly advise members not to ignore their mental health as well as physical health.
The Scottish Government have provided some clarification about the risks to people with liver disease (see reference at end of the note). This states:
“The following provides practical guidance on whether you might be in the high-risk group or not. The risk to an individual will also take account of other factors such as age and other health conditions.
1) High Risk: If you are either on immunosuppressants or you have severe scarring (cirrhosis). You are likely to be in this group if you usually see your liver specialist about once a year or more (and usually you would have been offered a flu jab).
2) Normal Risk: If you have a liver condition but no or very little inflammation and no or very little scarring and you are not on immunosuppressant medication and you are younger than 60 years old. You are likely to be in this group if you usually see your liver specialist less than once a year.”
In England, the NHS includes those with an organ transplant at high risk (extremely vulnerable) and those with liver disease at moderate risk (clinically vulnerable).
Reducing the risk of becoming infected: people with PBC are at no greater risk of getting infected and so should follow the national guidance. Social distancing and isolation, hand-washing and use of tissues for sneezes are the key elements here. Hospital and GP visits are discussed below. We also encourage people to use the country-relevant contact tracing app (available through Apple and Android stores).
Reducing the severity of complications if infected: there is a great variation in the response to the virus. Some risk factors are well defined, such as age, diabetes, obesity, lung disease and ethnicity. Everyone can be affected. There is a great deal of work going on to look at the impact of immunosuppression. Lessons from similar viruses suggests that the impact of many immunosuppressive agents may be relatively small and even sometimes beneficial so please remember this if you are taking immunosuppressive agents. Most clinicians believe that in non-advanced PBC, the immune system responds pretty well to infections, so again, do not worry unduly.
Ongoing medical care: this is a source of worry for people with PBC. Hospitals and GP surgeries are being bombarded by people and have made a few changes. Clinical appointments are being reviewed and many are being postponed or conducted by telephone or video link. Procedures such as endoscopy and ultrasound are reviewed on an individual basis. The benefits from the procedure have to be balanced against the risks entailed in coming to hospital and possibly being exposed to the virus. Hospital resources are being stretched so if a procedure or clinic visit can be safely postponed, it will be. As the number of new cases falls, hospitals are starting to re-arrange procedures such as ultrasound and endoscopy; this is done on an individual risk basis. Hospitals and GP surgeries are moving towards the new normal.
Do not change your medication without discussing with your doctor or nurse. If you are worried, give them a call.
Do ensure you do not run out of medication and contact your doctor or nurse in plenty of time to ensure you will not run out. Getting your medication may take longer than normal.
People with PBC can usually safely take paracetamol up to 6 tablets (3gm total) each day; non-steroidal anti-inflammatories such as Ibuprofen are usually best avoided. If you are taking paracetamol for pain and the pain persists or is associated with other, new symptoms, do seek medical advice
If you have any questions, do contact the Foundation: we can give you support and a listening ear. We can give medical information but cannot give medical advice.
Do stay safe and follow national guidance.
Other sites you may find of use include:
Current advice from the NHS
Latest news from Public Health England (PHE)
Latest news from the Government
Coronavirus Q&A from the World Health Organisation
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