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: Staying Safe After Shielding
Do I still need to shield?
Shielding was paused on 1 August 2020. This means:
- you can go to work as long as the workplace is covid-secure, but should carry on working from home wherever possible
- you can go outside as much as you like but you should still try to keep your overall social interactions low
- you can visit businesses, such as supermarkets, pubs and shops, while keeping 2 metres away from others wherever possible or 1 metre, plus other precautions
- you should continue to wash your hands carefully and more frequently than usual and that you maintain thorough cleaning of frequently touched areas in your home and/or workspace
- you will no longer receive free food parcels, medicine deliveries and basic care from the National Shielding Service
For practical tips on staying safe, see the guidance on how to stay safe outside your home.
If you are able to and still wish to, you can choose to continue to shield.
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.
Is it safe for me to meet friends and family?
You can now meet other people and go out to places like shops and restaurants. Outdoor activities are generally considered lower risk than indoor activities. You can also have visitors in your home, but you should still try to keep your overall social interactions low. Try to prioritise who you meet, how long you spend with them and how safe you feel about their likelihood of contamination. Where possible, use different bathrooms or disinfect afterwards. Try to stay at least 2 metres away from anyone you do not live with (or anyone not in your support bubble).
How can I keep myself as safe as possible at work?
On 28 July, SarcoidosisUK filmed a Q&A video about returning to work after shielding with Clinical Board member Dr Robina Coker, consultant in respiratory medicine at Hammersmith Hospital, London. You can watch the video here.
How can I keep myself as safe as possible when using public transport?
If you need to use public transport:
- Avoid peak travel times
- Wear a clean mask for each journey
- Put your mask on at home and remove it by the ear loops.
- Wash your hands thoroughly before and after putting your mask on or taking it off.
- Sit far apart from others and reduce contact with surfaces as much as possible.
My workplace is not covid-secure. What should I do?
If you cannot work from home and are concerned about having to go to work, talk to your employer. Employers should make sure suitable arrangements are in place so you can go to work. For example, you may be able to take up an alternative role or change your working patterns temporarily.
Employers, business owners and organisations have a duty to assess and manage risks to your safety in the workplace and on their premises. The government has issued guidance for employers and businesses on coronavirus. This includes guidance on how to make adjustments to help you maintain social distancing.
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
You may wish to show your employer the SarcoidosisUK Information for Employers Leaflet.
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.
Will I have to shield again?
You could be advised to shield again if there is an increase in the transmission of COVID-19 in the community.
If you’re clinically extremely vulnerable and live in an area where additional public health measures require you to resume shielding, the government will write to you and advise you to stay at home and shield.
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?
Free food parcels are no longer available but you can still get the following support:
- local volunteer support by contacting your local authority
- prescriptions, essential items and food you buy delivered by NHS Volunteer Responders
- priority slots for supermarket deliveries (if you previously registered for free food parcels)
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.
This information is subject to our disclaimer.
Suggest a Question
Related content from SarcoidosisUK:
Sarcoidosis and Fatigue
Do you experience fatigue? Find symptoms, treatment and more information about sarcoidosis and fatigue.
Do you want to find a consultant? Use our directory to find a sarcoidosis specialist or clinic near you.
How can we support you? Find more information on our Nurse Helpline, Support Groups and Online Support.