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PBC and Covid-19
From the PBC Foundation Medical Advisory Board, 22nd June 2020.
The last few weeks have been a worrying time for everyone and even more so for those with PBC. As the pandemic progresses, we are learning more about the virus, how to prevent spreading the virus, how to reduce the risk of getting the virus and what to do if you may have the virus.
The Government have developed policies, and these are developed by experts and, where possible evidence based. As the situation changes and knowledge increases, the advice is being modified.
Links for information include those below:
Department of Health and Social Care and Public Health England: (https://www.gov.uk/guidance/coronavirus-covid-19-information-for-the-public)
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.
Changes to rules on shielding:
In England, from 6th July, you can meet in groups of up to six people from outside your household outdoors and with social distancing and from 1st August, you will no longer need to shield. The advice will be that you can visit shops and places of worship, but you should continue to maintain rigorous social distancing.
In Scotland, you can take part in non-contact outdoor activities such as golf, fishing or outdoor swimming and you can meet one other household each day provided there are no more than eight people in the group and it takes place outdoors. This advice is until 31st July.
In Wales, you can now leave home to exercise or meet outside with people from another household. You should continue strictly to follow physical distancing continue to practice good hygiene using a hand sanitiser or handwashing with soap and water and avoid touching things touched by others.
In Northern Ireland, from 6th July, you are able to meet up to six people outside their home, as long as social distancing is strictly observed. If you are shielding alone, from 6th July you can also form a support bubble with one other household.
Please note that these guidelines may be modified and may be relaxed or tightened according to the pattern of infection, so please check the national guidelines for the current guidance.
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.
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.
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 and youth is no protector from death from the virus. 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 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
Latest advice on social distancing/isolation from the Government
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