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: Shielding
Latest Shielding Information
The Government is currently advising that people who have been advised to shield should do so until the 30th June. This date may change.
People who have previously been advised to shield should continue to do so. Th guidance states: “Those in the clinically extremely vulnerable cohort will continue to be advised to shield themselves for some time yet.” The government anticipates being able to give more nuanced guidance to those shielding based on their risk factors as their understanding of coronavirus develops. You can read the full document here.
I have pulmonary sarcoidosis. Do I need to adopt the government’s advice on shielding?
Yes – anyone with active pulmonary sarcoidosis should be following the government’s shielding measures.
Anyone who is on immunosuppressant medication should also be shielding.
ਨੂੰ government is advising that anyone who is ‘extremely vulnerable’ follows shielding measures. People with sarcoidosis may be classed as extremely vulnerable under one or more of the following categories:
- Category 3 – “People with severe respiratory conditions”
- Category 4 – “People with rare diseases”
- Category 5 – “People on immunosuppression therapies sufficient to significantly increase risk of infection.”
ਨੂੰ ਬ੍ਰਿਟਿਸ਼ ਥੌਰੇਕ ਸੁਸਾਇਟੀ has reinforced this advice. They recommend that pulmonary sarcoidosis patients are included in “people with rare diseases” category 4 and should therefore follow shielding measures.
SarcoidosisUK appreciate that this is a very challenging time for sarcoidosis patients. See the ‘Support’ section further down this page for help with shielding measures.
Anyone who is concerned about their health and is not sure whether or not they should shield should speak with their GP or specialist for advice.
If I am shielding can I have contact with other people in my household?
ਨੂੰ government advice gives guidance on minimising time in shared spaces and managing your use of rooms like the kitchen. Ideally you should be using separate bathrooms and bedrooms but obviously this is not possible for everybody. If sitting in a room with other people, you should sit as far from them as possible. It is also a good idea to keep the room well ventilated.
My sarcoidosis is in remission. Should I be shielding?
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.
If your sarcoidosis is in remission then you should speak with your GP or specialist for advice.
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.
If you have not received a shielding letter but are worried about your health, ਸਰਕੋਡੋਸਿਸ. ਯੂ would advise shielding if at all possible. This will help you to keep yourself safe.
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.
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.
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.
You can find more details on shielding, social distancing and self-isolating here: https://www.gov.uk/coronavirus
If I am shielding can I go outside?
ਨੂੰ government advice states that people who are shielding should not leave their house. Your house includes your garden, balcony or any private outside space.
It is likely that shielding will be required for longer than initially expected. Therefore, if you do not have a balcony, garden or other outside space you may need to leave the house for fresh air and exercise. As long as you can walk outside safely without coming into contact with other people then doing so is not dangerous.
I have non-pulmonary sarcoidosis. Should I be shielding?
If you have active pulmonary sarcoidosis, cardiac sarcoidosis or neurosarcoidosis then you should be shielding.
If you have another form of sarcoidosis (for instance affecting your skin, eyes, bones, liver or kidneys) and you are taking medication for your sarcoidosis, you should also follow shielding measures.
If you have another form of sarcoidosis and you are not taking medication for your sarcoidosis, then you are not required to follow shielding measures. If you are concerned about your health, you should speak with your GP or specialist for advice.
If you have not received a shielding letter but are worried about your health, SarcoidosisUK would advise shielding if at all possible until you are advised that you do not need to shield. This will help you to keep yourself safe.
Section 2: Shielding Letters
Will I receive a letter telling me to shield?
Some people with sarcoidosis have been sent a letter identifying them as an extremely vulnerable person.
Sarcoidosis was originally not included in the list of conditions which required a shielding letter to be sent.
The British Thoracic Society has now advised that all patients with an Interstitial Lung Disease (ILD), which includes pulmonary sarcoidosis, should be sent a letter advising that they are at risk. They have published their guidance for primary and secondary care which you can share with your GP or consultant.
If you believe that you should have received a letter and have not received one, we would advise you to contact your GP or specialist.
The British Thoracic Society recognises that some people who do not need to shield will receive a letter telling them to shield This is because the focus was getting the letter to as many vulnerable people as possible as quickly as possible and it was difficult for clinics to segment patients in time.
If you have received a letter and do not think you should shield then you should contact your GP or consultant to discuss this. In the meantime, we would advise shielding until you are told otherwise.
I see multiple specialists - where will my shielding letter be sent from?
The coordination of sending shielding letters varies across different areas and hospitals. Therefore you may receive multiple letters e.g. one from your local NHS trust and one from your ILD clinic.
If you believe that you should have received a letter and have not received one, we would advise you to contact your GP or specialist.
My GP has told me that I don’t need a shielding letter, but I think I do. What should I do?
If you believe that you should have received a letter and have not received one, we would advise you to contact your local specialist.
If, after contacting your specialist, you still have not received a shielding letter but are worried about your health, ਸਰਕੋਡੋਸਿਸ. ਯੂ would advise shielding if at all possible. This will help you to keep yourself safe.
Section 3: 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.
I’m taking steroids (e.g. prednisolone). Does this count as an immunosuppressant medication?
Yes. Anyone taking prednisolone should adopt shielding measures.
Does hydroxychloroquine count as an immunosuppressant medication?
ਹਾਂ. Anyone taking hydroxychloroquine should adopt shielding measures.
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 and follow shielding measures 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.
I have sarcoidosis so want to work from home to keep myself safe. What should I say to my employer?
Anyone with sarcoidosis should be following shielding measures and not be leaving the house to go to work. If possible, they should work from home.
We have published a letter explaining our advice which you can show to your employer. The letter is available here.
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.
ਸਰਕੋਡੋਸਿਸ. ਯੂ have an Information for Employers leaflet which can help explain sarcoidosis and its symptoms to your employer.
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 4: 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 ਅਤੇ 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 5: Support
What support is available to people who are shielding?
We appreciate that shielding will be difficult for everyone, and particularly for those with young children or who require medical care. ਸਰਕੋਡੋਸਿਸ. ਯੂ recommend doing as much as you can to reduce your risk. Try to keep a balance between what is recommended by the government and what is practical, while making sure that you look after your mental health. You will notice that the government guidance says things like ‘aim to’ and ‘it is recommended’. This is because everyone knows how difficult it is to follow shielding measures exactly.
People who are extremely vulnerable to coronavirus and live in England can register for support from the government.
You may also be able to find support through a local voluntary group such as Covid 19 Mutual Aid UK.
Where can I get support relating to my sarcoidosis?
ਸਰਕੋਡੋਸਿਸ. ਯੂ 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 ਸਰਕੋਡੋਸਿਸ. ਯੂ, 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.
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