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.
Section 1: Guidance for the Clinically Extremely Vulnerable
Do I still need to shield?
What tier/level of advice should I follow?
What if I can't wear a mask when I'm out?
For some people with respiratory conditions, wearing a face coverings can be difficult. The UK government has advised that people with respiratory conditions do not need to wear face coverings, so if you are finding it too hard, then you do not have to wear one. You can order a badge with the words “I can’t wear a mask. I have a lung condition” from our shop.
I'm clinically extremely vulnerable, is it safe for me to meet friends and family?
You should continue to maintain strict social distancing, wash your hands regularly and avoid touching your face. Try to keep the number of social interactions that you have low. The fewer social interactions you have, the lower your risk of catching COVID-19.
Avoid gatherings with large numbers of people, especially indoors, because it significantly increases the risk of viral transmission.
If the local restrictions in your area allow you to meet with others outside your household, your risk of catching COVID-19 is lower if you meet them outdoors. If you meet indoors, keep the area well ventilated with fresh air, for example by opening the window. You can also go out and exercise in an outdoor public place; further information on how you can keep fit and healthy is available. Continue to observe strict social distancing with anyone outside of your household or support bubble. The more you socially distance from others, including your own household, the less likely you are to catch COVID-19. You should always stay at least 2 metres away from other people visiting your home.
I'm clinically extremely vulnerable, should I go to work?
You are currently advised to work from home where possible. As a general principle, working from home reduces the chance of you being exposed to the virus. If you need support to work at home or in the workplace you can apply for Access to Work.
If you cannot work from home, you can still go to work in all tiers.
Your employer is required to take steps to reduce the risk of exposure to COVID-19 in the workplace and should be able to explain to you the measures they have put in place to keep you safe at work.
Consider how to get to and from work. If you need to use public transport, you must wear a face covering unless you are exempt. Consider travelling outside peak hours to reduce the number of people with whom you come into contact.
If you cannot make alternative arrangements, your employer may be able to furlough you under the Coronavirus Job Retention Scheme, which has been extended until the end of March 2021. You should have a conversation with your employer about whether this is possible.
How can I keep myself as safe as possible when using public transport?
If you need to travel, walk or cycle if you can. For longer journeys, or if you are unable to walk or cycle, try to minimise the number of people you come into close contact with. Travelling by car is likely to mean fewer social contacts than travelling by public transport. You should avoid sharing a car, especially with people outside of your immediate household or support bubble.
My workplace is not covid-secure. What should I do?
Where employers are not managing the risk of COVID-19, the Health and Safety Executive and local authorities will take action which can range from the provision of specific advice, issuing enforcement notices, stopping certain work practices until they are made safe and, where businesses fail to comply with enforcement notices, this could lead to prosecution.
If you have concerns about your health and safety at work you can raise them with your workplace union, the Health and Safety Executive or your local authority.
What is a support bubble?
If you live alone or you’re a single parent who lives alone with your children, you can meet with 1 other household without staying 2 metres away from them.
Section 2: Medication
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.
Immunosuppressant medication includes prednisolone and the following treatments:
Conventional immunosuppressant medications such as: azathioprine, leflunomide, methotrexate, mycophenolate (mycophenolate mofetil or mycophenolic acid), ciclosporin,cyclophosphamide, tacrolimus, sirolimus.
Biologic and targeted synthetic medications include: rituximab (within the last 12 months); or anti-TNF drugs (etanercept, adalimumab, infliximab, golimumab, certolizumab); tocilizumab; abatacept; belimumab; anakinra; secukinumab; Ixekizumab; ustekinumab; sarilumumab; canakinumab, apremilast, baracitinib, tofacitinib, or any biologic biosimilars.
Reference: The Leeds Hospital Teaching Trust.
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, 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.
Would being immunosuppressed help against coronavirus because the virus attacks the body through the immune system?
At the moment we do not know what medication might be effective to treat or prevent coronavirus. As it is a new virus, we have little data on how it affects the body.
Should I take Vitamin D?
Anyone with sarcoidosis should speak to their doctor before taking any supplements.
If you have sarcoidosis there is an increased chance you would experience side effects from taking vitamin D supplements. It is essential that you have your vitamin D level measured before you start any supplements, and that these levels are monitored whilst you remain on therapy (usually with a blood test two months after starting therapy).
Find more information on sarcoidosis and vitamin D here.
Section 3: Contracting Coronavirus
How can I prepare, in case I do contract coronavirus?
We advise that you ensure you have all your medical information to hand – either on your phone or printed and in a folder. This should include your medical history, contact details of your GP and specialists, and details of any medication you are taking.
What should I do if I contract coronavirus?
If you contract, or suspect you have contracted, the virus, you should follow NHS 111’s advice. This advice changes as the situation develops so please check the website for the most recent advice.
I'm worried about triaging. If I contract coronavirus and I’m hospitalised, should I inform the doctors about my sarcoidosis?
Yes. Doctors need to be aware and understand your condition and the medication you are on to look after you properly.
Many factors will be taken into consideration when triaging is necessary. Triaging will only happen when there are not enough beds – this is currently not the case. The NHS is well prepared to manage a predicted increase in demand.
Section 4: Support
What support is available?
You should continue to seek support from the NHS for your existing health conditions. You can access a range of NHS services from home, including ordering repeat prescriptions or contacting your health professional through an online consultation. To find out more visit Health at Home, or download the NHS App. If you have an urgent medical need, call NHS 111 or, for a medical emergency, dial 999.
Any carers or visitors who support you with your everyday needs can continue to visit. They should follow social distancing guidance where close or personal contact is not required.
You should continue to access support from local charities and organisations, as well as NHS Volunteer Responders. As well as helping with shopping and medicines delivery, NHS Volunteer Responders can help with a regular, friendly phone call, either with someone else who has previously been advised to shield or with different volunteers and transport to medical appointments. Call 0808 196 3646 between 8am and 8pm to arrange support or visit the NHS Volunteer Responders website.
Where can I get support relating to my sarcoidosis?
SarcoidosisUK run a Nurse Helpline offering advice and guidance on sarcoidosis. For more information and to sign up for a call please visit our Helpline webpage.
SarcoidosisUK operate a network of support groups across the UK. Given the current situation the groups are moving online. To find your local group, please visit our Support Group webpage.
SarcoidosisUK host a Facebook group offering peer support for anyone affected by sarcoidosis. You can request to join the Facebook group here.
Where can I get further information?
For the latest information from SarcoidosisUK, you can:
If your question is not answered by these FAQs, please submit it using the form below. If your query is urgent, please get in touch with SarcoidosisUK.
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