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This page contains FAQ about Covid-19, from a sarcoidosis patient perspective. The information is updated regularly when new guidance is published by the NHS, Public Health England and the UK Government. If you think there is a question missing, please fill in the form at the bottom of the page. 

I have sarcoidosis. Do I need to adopt the government’s advice on shielding?

Yes. Our advice is that anyone who has sarcoidosis affecting their lungs and/or is taking immunosuppressant medication, follows shielding measures with immediate effect.

The government is advising that anyone who is ‘extremely vulnerable’ follows shielding measures. This includes people with severe respiratory conditions and people on immunosuppressant medication. 

Shielding means staying at home and avoiding any face to face contact.

We appreciate that shielding will be difficult for some people but recommend doing as much as you can to reduce your risk. This is a challenging time and people will need to find a balance between what risk they are wiling to take and how compromised their health is.

See official UK government advice on shielding for extremely vulnerable people. 

What is the difference between shielding, self-isolating and social distancing?

Shielding is the advice for vulnerable people to stop physical contact with other people to protect themselves from contracting the virus.

Self-isolating is the advice for people who have coronavirus or think they have coronavirus because of symptoms such as a persistent cough and/or fever. This is to prevent them from spreading the virus.

Social distancing is the advice for everyone. This means reducing contact with people as much as possible to try and keep the whole population safe.

The government has said that they are sending letters to people who are vulnerable. Will I get one because of my sarcoidosis?

We don’t yet know if people with sarcoidosis will be sent a letter from the NHS advising them to start shielding.

However, we believe sarcoidosis which seriously affects the lungs and means you are taking immunosuppressant medication means that you should start shielding.

If you believe that you should have received a letter and have not received it by the 29th March, we would advise you to contact your GP.

My sarcoidosis is in remission. Do I need to adopt social distancing

If you are in remission it means that sarcoidosis is dormant but may come back. It is important to note that remission is not the same as cured or full recovery. Some people in remission will never have another problem with sarcoidosis. However, others will suffer flare ups from time to time.

Assuming that you are not taking immunosuppressant medication, you are not as at risk as someone with chronic sarcoidosis. However, sarcoidosis may have caused long-lasting damage to your lungs or other organs which makes you more at risk from coronavirus. Therefore, we would still highly recommend being cautious and taking appropriate precautions to reduce your risk. 

What is immunosuppressive medication?

Immunosuppressive drugs are a class of drugs that suppress, or reduce, the strength of the body’s immune system. Some immunosuppressive drugs are used to treat autoimmune disorders such as sarcoidosis. This helps to reduce the impact of the symptoms of sarcoidosis.  

Types of immunosuppressive medication commonly used for sarcoidosis include prednisone (Deltasone, Orasone), mycophenolate (CellCeptMyfortic), azathioprine (Azasan, Imuran), infliximab (Remicade) and sirolimus (Rapamune) 

Should I stop taking my immunosuppressant medication to reduce my risk of catching coronavirus?

No. Do not change your medication without consulting your doctor. Although taking immunosuppressant medication can make your more at risk of catching an infection, if you have been given medication to manage your sarcoidosis it is important you continue to take that medication to ensure you are as healthy as possible. 

I have sarcoidosis so want to work from home to keep myself safe. What should I say to my employer?

SarcoidosisUK believe that people with sarcodisis can be classed as vulnerable under the Government’s guidance on social distancing for vulnerable adults. You should explain to your employer that the list provided by the government is not an exhaustive list and that, as someone with sarcoidosis, you would be advised to get the flu jab on medical grounds.

The government advice for employers states that “employees from defined vulnerable groups should be strongly advised and supported to stay at home and work from there if possible”.

You can see the full guidance here.

SarcoidosisUK have an Information for Employers leaflet which can help explain sarcoidosis and its symptoms to your employer.

We have also published a letter explaining our advice which you can show to your employer. The letter is available here.

Where can I get further information?

For the latest information from SarcoidosisUK, you can: 

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For the latest information from the NHS see here. 

For the latest information from the Government see here. 

For the latest guidance on social distancing for vulnerable adults see here. 

This information is subject to our disclaimer.

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