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.
SarcoidosisUK Vacccine Statement
In all groups, regardless of immune status, immunity is not conferred until 7 days after the booster shot.
2) A second dose of the Pfizer BioNtech vaccine should not be given to those who have experienced anaphylaxis to the first dose of Pfizer BioNtech vaccination.
Section 1: 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 2: Contracting Coronavirus
Should I continue to take precautions now that restrictions have been lifted?
We know that there are some mixed feelings amongst sarcoidosis patients and other immunosuppressed groups with regards to how they can keep themselves safe now that all restrictions have been lifted in England.
Though a return to normality is needed by many after such a turbulent year and a half, SarcoidosisUK recognises that those in the clinically extremely vulnerable group may not have the same level of protection from the vaccine as others. The team at SarcoidosisUK will therefore be continuing to wear face masks on public transport, in hospitals, GP surgeries, chemists and supermarkets so that those who remain extremely vulnerable to COVID-19 can get to their health appointments and access their medicines safely.
We urge others to do the same and act with caution, and to bear in mind that the person standing next to you might not have the same level of protection as yourself.
SarcoidosisUK will lobby for the government to amend the restrictions and require masks in these places, in an effort to protect those most vulnerable. We will continue to be a quality source of information and support in this next step, and will ensure that sarcoidosis voices are heard.
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 3: 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.
This information is subject to our disclaimer.
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