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COVID-19 (Coronavirus) and PBC
From the PBC Foundation Medical Advisory Board, 25th March 2020.
Over the last few weeks, our helpline has received many calls from people with PBC worried about Coronavirus.
Get information from reliable sources
There are many sources of reports, wireless, television, social media, press and so on. Some of the information is inaccurate, some is alarmist and sensational and some is just wrong. There are several reliable sources of information and these include:
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)
Remember the situation is changing, so keep up to date, using the sensible websites. Remember too that the situation varies around the world, so those living outside the UK, should refer to the local guidance.
COVID-19 and PBC
The spectrum of illness associated with Covid-19 varies from an asymptomatic infection to severe illness. Having PBC probably does not increase your risk of getting Covid-19 but may make any infection much more serious if you do get it. Although PBC is an orphan disease, the Medical Advisory Board does not consider this a rare disease, as indicated by the guidance but is included in the category of liver diseases. Following a review of available evidence and after discussion, the Medical Advisory Board advises that
• If you have PBC without significant scarring of the liver (and no other high-risk medical or other conditions), your risk of becoming severely unwell from Covid-19 is probably no higher than that of other people. It is difficult to be certain of this, however, so you should continue to take care to avoid getting the infection in the first place
• If you have PBC with significant scarring of the liver, your risk of becoming severely unwell from Covid-19 is likely to be higher than that of other people. It is difficult to be certain of this - but you are well advised to take extra precautions and consider self-isolating
• If you do not know whether you are at risk of becoming severely unwell from Covid-19, it is best to consult your GP or liver doctor.
Public Health England have extended the list of people who are considered vulnerable and are advising those who are at increased risk of severe illness from coronavirus (COVID-19) to be particularly stringent in following social distancing measures.
This group includes those who are:
aged 70 or older (regardless of medical conditions)
aged under 70 with an underlying health condition listed below (i.e. anyone instructed to get a flu jab as an adult each year on medical grounds):
chronic (long-term) respiratory diseases, such as asthma, chronic obstructive pulmonary disease (COPD), emphysema or bronchitis
chronic heart disease, such as heart failure
chronic kidney disease
chronic liver disease, such as hepatitis
chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), a learning disability or cerebral palsy
problems with your spleen – for example, sickle cell disease or if you have had your spleen removed
a weakened immune system as the result of conditions such as HIV and AIDS, or medicines such as steroid tablets or chemotherapy
being seriously overweight (a body mass index (BMI) of 40 or above)
those who are pregnant
Note: there are some clinical conditions which put people at even higher risk of severe illness from COVID-19. Many practices will have been in contact with those at greater risk and given general advice. For now, you should rigorously follow the social distancing advice in full, outlined below.
People falling into this group are those who may be at higher risk include those who
have had an organ transplant
are having certain types of cancer treatment
have blood or bone marrow cancer, such as leukaemia
have a severe lung condition, such as cystic fibrosis or severe asthma
have a condition that makes you much more likely to get infections
are taking medicine that weakens your immune system
are pregnant and have a serious heart condition
If you're at high risk, you will be contacted by the NHS by Sunday 29 March 2020. Do not contact your GP or healthcare team at this stage – wait to be contacted.
If you're at high risk of getting seriously ill from coronavirus, there are extra things you should do to avoid catching it. These include:
not leaving your home – you should not go out to do shopping, pick up medicine or exercise
stay at least 2 metres (3 steps) away from other people in your home as much as possible
Ask friends, family or neighbours to pick up shopping and medicines for you. They should leave them outside your door. If you need help getting deliveries of essential supplies like food, you can register to get coronavirus support.
Hospital visits: the NHS is under much greater pressure than normal and Covid-19 causes extra pressure. As predicted, the pandemic is affecting more people in the UK and already most if not all hospitals are recommending that routine check-ups be postponed for those who are well and stable. Some are arranging video conferencing to conduct out-patient appointment. This is an evolving situation, so before your appointment, so you should check the latest advice from the NHS (see https://www.nhs.uk/conditions/coronavirus-covid-19/) or your own hospital. As always, use your common sense – if you are uncertain what to do, check with your doctor or specialist nurse.
Medication: many people with PBC will be taking medication, including immunosuppressive agents. We are not entirely sure how immunosuppression may affect either the risk of getting Covid-19 or the severity of illness if you do contract the infection. As always with medication, you have to balance the benefits of immunosuppression with the risks and consequences. In general, the dose of immunosuppression is adjusted to be at the lowest level that will control the condition or, in the case of liver transplants, protect the organ from being rejected. If you lower the immunosuppression so that you get rejection, that will increase your risk: so a sensible balance must be adopted. Our advice is that, if you are worried, you discuss your medication with you doctor or nurse before making any changes. There is no need to change your dose of Urso.
If you become unwell
Symptoms of COVID-19 are not specific but include cough, fever and shortness of breath. If you get any of these symptoms, you may have the virus but there are many other causes for one or more of these symptoms. Do not go to the surgery or hospital unless specifically advised.
The advice of 16th March recommends that
If you have symptoms
Stay at home for 7 days if you have either:
a high temperature
a new continuous cough (this means coughing a lot for more than an hour, or 3 or more coughing episodes in 24 hours (if you usually have a cough, it may be worse than usual))
This will help to protect others in your community while you are infectious.
Do not go to a GP surgery, pharmacy or hospital.
You do not need to contact NHS 111 to tell them you’re staying at home.
The NHS will not be testing people who are self-isolating with mild symptoms.
How long to stay at home:
if you have symptoms, stay at home for 7 days
if you live with other people, they should stay at home for 14 days from the day the first person got symptoms
If you live with someone who is 70 or over, has a long-term condition, is pregnant or has a weakened immune system, try to find somewhere else for them to stay for 14 days.
If you have to stay at home together, try to keep away from each other as much as possible.
Use the NHS 111 online coronavirus service if:
you feel you cannot cope with your symptoms at home
your condition gets worse
your symptoms do not get better after 7 days
You should do this on line at https://111.nhs.uk/covid-19/; only call 111 if you cannot get help on line.
Everyone must follow the current guidelines:
Everyone must stay at home to help stop the spread of coronavirus.
You should only leave the house for 1 of 4 reasons:
shopping for basic necessities, for example food and medicine, which must be as infrequent as possible
one form of exercise a day, for example a run, walk, or cycle – alone or with members of your household
any medical need, or to provide care or to help a vulnerable person
travelling to and from work, but only where this absolutely cannot be done from home
These 4 reasons are exceptions – even when doing these activities, you should be minimising time spent outside of the home and ensuring you are 2 metres apart from anyone outside of your household.
wash your hands with soap and water often – do this for at least 20 seconds
use hand sanitiser gel if soap and water are not available
wash your hands as soon as you get back home
cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze
put used tissues in the bin immediately and wash your hands afterwards
Do not touch your eyes, nose or mouth if your hands are not clean
PBC Foundation meetings
The PBC Foundation postponed all the various meetings and conferences that are due to take place in the next three months. While we regret the impact, the health and welfare of participants is the priority.
Do remember that the situation is changing day by day and advice is changing too. While the information given above is correct for the date given, check the NHS and Government links given above for the latest 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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