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 / Staying Safe After Shielding
Do I still need 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.
I'm clinically extremely vulnerable, is it safe for me to meet friends and family?
The advice for socialising for the clinically extremely vulnerable differs based on the local COVID alert level in your area. Click čia to find out what the COVID alert level is in your area.
The general advice for socialising is:
- Continue to observe strict social distancing with anyone outside of your household or support bubble, wash your hands regularly and avoid touching your face. The more you socially distance from others, the less likely you are to catch COVID-19. You do not need to maintain social distancing within your home with members of your household but should stay at least 2 metres away from other people visiting your home.
- Keep the number of social interactions that you have low.
- If the rules 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.
- Try to reduce the amount of time you spend in settings where you are unable to maintain social distancing, or where other people’s activities may reduce the likelihood of individuals maintaining social distancing.
I'm clinically extremely vulnerable, how can I keep myself as safe as possible at work?
The advice for work for the clinically extremely vulnerable differs based on the local COVID alert level in your area. Click čia to find out what the COVID alert level is in your area.
The general advice for work is:
- Everyone is currently advised to work from home where possible.
- If you cannot work from home, you can still go to work. However, if you live or work in an area where formal shielding advice has been put in place, and you have received a new shielding notification informing you of this, you are advised not to go to work.
- 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.
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 čia.
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 Informacija darbdavių informaciniam lapeliui.
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?
In the future, the government will only reintroduce formal shielding advice in the very worst affected local areas and for a limited period of time. The government will write to you to inform you if you are advised to shield. You do not need to follow formal shielding advice again unless you receive a new shielding notification advising you to do so.
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 ir 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?
SarkoidozėUK 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 SarkoidozėUK, 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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