LUK Covid-19 Briefing
I have just updated three of the important articles on our website;
I share the views of many charities who are saying that the measures announced this week do not go far enough to support and protect people within our community who are most at risk from coronavirus.
The next few weeks and months may be very challenging for some as we experience increasing cases across most of the UK and decreasing support. The Coronavirus Job Retention (furlough) Scheme will end on 31st October. The Job Support Scheme that will replace it is only for “viable” jobs, so to be eligible someone must continue to work at least 33% of their normal hours. Unfortunately, it seems likely that this will put some people in a very difficult position where they have to choose between their income and their health – a situation which is deeply troubling.
I will continue to keep you updated as the situation develops in the coming weeks and months.
Coronavirus Resembles Acute SLE Flare
In severe cases of COVID-19, an exuberant activation of immune cells resembles that seen in acute flares of Systemic Lupus Erythematosus.
Full report here: https://t.co/7OOTnL3Sg5#lupusawarenessmonth #lupusawareness #Lupus #lupustrust #COVID19 pic.twitter.com/HFHyORa4wf
— Lupus Trust (@lupustrust) October 14, 2020
Cambridge spin-out DIOSynVax has received £1.9million
to take a DNA vaccine against the #coronavirus to clinical trials 26/08/2020
Cambridge spin-out DIOSynVax has received £1.9million from @innovateuk to take a DNA vaccine against the #coronavirus to clinical trials: https://t.co/kHMRMcEmIq@UKRI_News @southamptonCRF #COVID19 #vaccine
— Cambridge University (@Cambridge_Uni) August 26, 2020
Latest Covid-19 Update 11/08/2020
We’ve just published an update to our information and guidance about #lupus and #COVID_19 to account for the pausing of #shielding in England, Scotland and Northern Ireland. https://t.co/2bsB7cQFmc pic.twitter.com/bnZQAk6Bf7
— LUPUSUK (@LUPUSUK) August 11, 2020
Lupus UK resources 11/08/2020
We have a range of other resources worth checking out too;
Returning to work:https://t.co/GEClZYaCvr
Looking after your well-being:https://t.co/PLexa1tdI0
LUPUS UK COVID-19 Emergency Assistance Fund:https://t.co/EgcquO9A2V pic.twitter.com/X4Uut9mn1l
— LUPUSUK (@LUPUSUK) August 11, 2020
Coronavirus Update 23/06/20
I have just published a lot of updates to our article about available support for people affected by COVID-19 – https://www.lupusuk.org.uk/coronavirus-support/
This article was originally published on 25th March and a LOT has changed since then.
Please help us to share this with our members and people affected by lupus in local areas.
I have just published updates to our article at https://www.lupusuk.org.uk/covid19-hydroxychloroquine/
The highlight of this update is that RAIRDA received a response from the Chief Pharmaceutical Officer for England, Dr Keith Ridge CBE. You can read the response in full HERE. We are pleased to see that precautions are being taken to prevent further shortages:
“NHS England and NHS Improvement are working closely with the Department for Health and Social Care, industry and others in the supply chain to help ensure patients can access the medicines they need, including hydroxychloroquine, and precautions are in place to reduce the likelihood of any shortage…I am working closely with pharmacists and GPs to support this message and restrict prescriptions and supply to those with current clinical need for licensed indications or as part of a clinical trial.”
We have also seen further reports indicating that hydroxychloroquine is not effective to prevent or treat COVID-19;
• On 21st April Associated Press published a report on findings from a USA study involving 368 patients which indicated hydroxychloroquine did not aid recovery from the virus and may have done more harm than good. The findings so far are not rigorous and so we are awaiting results from the large, controlled trials underway across the world.
• On the 24th April the European League against Rheumatism (EULAR) published a press release regarding a study examining COVID-19 in people with SLE. EULAR Past-President Professor Johannes W. Bijlsma commented, “Our preliminary conclusion, based on the observation that most of the SLE patients in this study received long-term treatment with hydroxychloroquine, having blood concentrations of the drug within therapeutic range, is that hydroxychloroquine does not seem to prevent COVID-19, at least its severe forms, in patients with SLE.”
I will keep you updated about any further developments.
Starting next week we’ll be temporarily changing the LUPUS UK office and helpline opening hours to keep our staff safe (and allow Chris to finally go into his planned semi-retirement). pic.twitter.com/ry4jiOE0ri
— LUPUSUK (@LUPUSUK) April 17, 2020
We’ve just published an update to our information and guidance about #lupus & #coronavirus (#COVID_19).
We hope that this update will help to make the recommendations clearer and more easy to understand. We’ll continue to update this article regularly.https://t.co/wh9n7sBwvu pic.twitter.com/fcUYH5aoZT
— LUPUSUK (@LUPUSUK) April 9, 2020
Coronavirus COVID 19 risk advice for patients on immunosuppressants_V2_A4_0#LUPUS & #CORONAVIRUS (#COVID_19) GUIDANCE UPDATED: We’ve just published a significant re-write to our info and guidance. Please read the full article carefully.
— LUPUSUK (@LUPUSUK) March 25, 2020
— LUPUSUK (@LUPUSUK) March 24, 2020
20th March 2020
Lupus Coronavirus COVID-19 20Mar2020 Briefing.
18th March 2020 12:00
I hope you are all keeping well and staying as relaxed as possible during this stressful time. I have a few updates for you from National Office.
LUPUS UK Guidance Update
We have a further update for the website guidance ready for publication. I’ve just been informed by our webhosts that our website should be able to handle the increased traffic now and they are on-hand to assist. Expect the update to go live in the next hour. I will email you with the link and a pdf copy of the updated guidance when it goes live.
National Office Staffing
To protect our team, most of our staff will be working from home for the foreseeable future. We’ve got most people set up and we’re working through one or two teething issues. Chris and myself are in the office at the moment taking calls – the phones have been ringing almost constantly with people seeking guidance. Due to the current changes and significant number of enquiries we’re receiving, we may be a bit slower than usual in assisting you and we’re having to prioritise tasks carefully. We’re really grateful for your patience and the whole team is working as hard as it can to help.
The majority of enquiries we are receiving are from people with lupus who are struggling with unsympathetic employers who are not adequately protecting their health and wellbeing. We are working on additional guidance and information about this. If you are receiving questions about this, here are a couple of helpful pointers;
1. ACAS Guidance
ACAS have an excellent article with guidance for employers and employees which is being updated regularly. A link is included in our website article under ‘further reading’ – https://www.acas.org.uk/coronavirus. One of the most relevant sections at the moment is under ‘Vulnerable People’:
Employers need to be especially careful and take extra steps for anyone in their workforce who is at increased risk from coronavirus.
They include, but are not limited to, those who:
• have a long-term health condition, for example asthma, diabetes or heart disease, or a weakened immune system as the result of medicines such as steroid tablets or chemotherapy
• are pregnant
• are aged 70 or over
• care for someone with a health condition that might put them at a greater risk
2. Government guidance not mentioning ‘lupus or SLE’
Many people have said their employers won’t allow them to take extra precautions because ‘lupus’ is not a listed condition in the guidance at https://www.gov.uk/government/publications/covid-19-guidance-on-social-distancing-and-for-vulnerable-people/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults. This is the same list used by the NHS for the annual influenza vaccination campaign, with the exception that it doesn’t state it is not an exhaustive list. Just because lupus and many other conditions are not included on this list does not mean that they are not ‘serious health conditions’. I’m going to be in contact with our friends at RAIRDA to see whether we can produce a joint statement and encourage amendment to this wording. It is currently insufficient and people with rare conditions are falling through the cracks.
17th March 2020
The UK has now advised against all “non-essential” travel and contact with others and recommended people with significant health conditions (including lupus) to self-isolate for a period of 12 weeks.
If you are in crisis as a result of these new measures, please contact LUPUS UK by calling 01708 731251 or emailing email@example.com.
The following article has been updated to reflect the changing guidance. The situation is likely to change further over the coming days and weeks. Please check back here regularly for the latest updates as guidance will change.
What is coronavirus (COVID-19)?
A coronavirus is a type of virus. As a group, coronaviruses are common across the world. Typical symptoms of coronavirus include fever and a cough that may progress to a severe pneumonia causing shortness of breath and breathing difficulties.
Novel coronavirus (COVID-19) is a new strain of coronavirus first identified in Wuhan City, China.
How is it spread?
It is a new strain of virus, so it is not yet known exactly how this coronavirus spreads from person to person. Similar viruses are spread in cough droplets. It’s very unlikely it can be spread through things like packages or food. Viruses like coronavirus cannot live outside the body for very long.
What is the risk of coronavirus in the UK?
The UK Chief Medical Officers have raised the risk to the UK to high. You can read an up-to-date report of risk HERE.
What are the signs and symptoms of coronavirus?
– a cough (in many cases this has been reported as dry and persistent)
– a high temperature
– shortness of breath
But these symptoms do not necessarily mean you have the illness.
The symptoms are similar to other illnesses that are much more common, such as cold and flu.
Generally, coronavirus can cause more severe symptoms, such as pneumonia, in people with weakened immune systems, older people, and those with long-term health conditions.
Does my lupus place me in the ‘high-risk’ group for coronavirus?
Data collected so far suggests that people of all ages are at risk of contracting the virus. However, as with most respiratory illnesses, it is likely to be the young, old, and those with chronic health conditions or weakened immune systems who are most at risk once infected.
Lupus is a chronic health condition and many people living with the condition are likely to have a weakened immune system, most commonly as a result of immunosuppressive medication they are required to take. This means that many people with a diagnosis of lupus would be considered as ‘high-risk’ if they contracted the virus.
Which lupus treatments are immunosuppressive?
Many medications used in the treatment of lupus help to control lupus activity by dampening down the immune system. The following medications weaken your body’s immune response to infections:
- High-dose oral steroids (20mg or more daily) [Prednisolone]
- azathioprine [Imuran]
- mycophenolate mofetil (MMF) [CellCept]
- cyclophosphamide [Cytoxan]
- rituximab [Rituxan]
- belimumab [Benlysta]
What about hydroxychloroquine?
Unlike the medications listed above, hydroxychloroquine is known as an immunomodulatory drug and is unlikely to limit your body’s response to infection.
Scientists are currently investigating whether hydroxychloroquine may also offer some protective benefit against the coronavirus (COVID-19). Early studies in China have indicated that chloroquine (a similar anti-malarial historically used to treat lupus) has aided the recovery of patients infected with the virus. It is believed that the activity of hydroxychloroquine on viruses is probably the same as that of chloroquine since the mechanism of action of the two molecules is identical.
What precautions can I take to reduce my risk of contracting the virus?
There are some things that you can do to reduce your risk of catching viruses:
– Wash your hands with soap and water for 20 seconds. Use hand sanitiser gel (with at least 60 percent alcohol) if soap and water are not available. It is especially important to wash your hands more often.
1) when you get to work or arrive home
2) after you blow your nose, cough or sneeze
3) before you eat or handle food
– Try to avoid close contact with people who are unwell
– Do not touch your eyes, nose or mouth if your hands are not clean
Should I wear a face mask?
The British Lung Foundation says: “We do not recommend using a face mask to protect yourself as there isn’t enough evidence to show how effective they are. Also, for people living with a lung condition wearing a face mask can make breathing more difficult.”
Should I stop taking my lupus medication(s)?
It is advised that you DO NOT make any changes to your prescribed lupus medications in an attempt to reduce your risk of contracting the virus. It is important to remember that if your lupus becomes active then this may also increase your risk of picking up infection. If you are concerned that you have developed symptoms of the coronavirus then please take advice from your rheumatologist regarding what medication is safe to continue.
Should I still attend medical appointments?
If you have a scheduled medical appointment then it is important that you contact your hospital to check whether you should still attend.
The British Society for Rheumatology has advised clinicians to consider the feasibility of providing remote consultations and implement this where appropriate to reduce the need for patients to attend face-to-face appointments. This includes telephone clinics where your doctor or nurse specialist may call you rather than see you in the hospital clinic. Different hospitals are drawing up separate plans so it is important that you check what your local rheumatology department are doing before travelling to your appointment.
Do I need to stay home from work/school and avoid public places?
UK officials have announced that people aged over-70 or with significant health conditions (including lupus) should self-isolate for a period of 12 weeks. It is therefore advised to stay home from work/school and avoid public places. It is not necessary to stay permanently within the home during this period (i.e. you can go for a walk) but it is recommended that you avoid contact with others.
Do I need to avoid public places?
Following the emergency Cobra meeting on Friday 12th March 2020 additional measures on delaying the spread of the virus were announced.
It has been recommended that older people and those with pre-existing health conditions (including lupus) should not go on cruises.
UK officials announced that it is currently premature to advise people with underlying health conditions to take further preventative actions such as staying away from work, school and other public places. This guidance may change as the situation develops.
You only need to stay away from public places (self-isolate) if you have symptoms of coronavirus (COVID-19) infection, however mild, or have been advised to by the 111 online coronavirus service or a medical professional.
I have a holiday booked, should I still go?
UK officials have announced that people aged over-70 or with significant health conditions (including lupus) should self-isolate for a period of 12 weeks. If you have a holiday booked during this time, it would be recommended not to travel.
If you are planning on travelling overseas, it is important to be aware that some countries are currently a higher risk for the virus than others. You can get the most up-to-date advice for overseas travel HERE.
It is important to bear in mind that the situation is changing rapidly and you could be subject to delays in your return journey. For this reason it is essential that you take additional supplies of your medication away with you. Further advice about taking medication on holiday can be found in our article HERE.
What do I do if I suspect I have symptoms of coronavirus?
NHS 111 has an online coronavirus service that can tell you if you need medical help and advise you what to do.
Use this service if:
– You think you might have coronavirus
– You’ve recently been to a country or area with a high risk of coronavirus
– You’ve been in close contact with someone with coronavirus
Getting help in Scotland, Wales or Northern Ireland
– Scotland: call your GP surgery or call 111 if your surgery is not open
– Wales: call 111 (if available in your area) or call 0845 46 47
– Northern Ireland: call 0300 200 7885
DO NOT go to a GP surgery, pharmacy or hospital. Call 111 if you need to speak to someone.
Also DO NOT make any changes to your prescribed lupus medications unless directed to do so by your lupus consultant.
If you have a new continuous cough OR a high temperature (37.8 degrees or higher), you should stay at home and self-isolate (see below) for at least 7 days from when your symptoms started.
If you or someone you live with presents with symptoms of the virus the entire household should self-isolate for at least 14 days.
If you are confirmed to have contracted coronavirus (COVID-19), you may be advised by your consultant to temporarily stop immunosuppressive medications until the infection has cleared. This should only be done in consultation with your rheumatology team.
You may also be advised to withdraw from anti-inflammatory medications (steroids and non-steroidal anti-inflammatories such as ibuprofen and naproxen) if you are confirmed to have contracted coronavirus (COVID-19) as they could increase the risk of complications from the virus. It is very important that you DO NOT stop your steroid dose suddenly. A reduction in oral steroids should always be under your doctor’s supervision.
How to self-isolate if you’re asked to
If there’s a chance you could have coronavirus, you may be asked to stay away from other people (self-isolate).
This means you should:
– Stay at home
– Not go to work, school or public places
– Not use public transport or taxis
– Ask friends, family members or delivery services to do errands for you
– Let your doctor or nurse specialist know if you are worried that you may run out of medication if self-isolating
– Try to avoid visitors to your home – it’s OK for friends, family or delivery drivers to drop off food
You may need to do this for up to 14 days to help reduce the possible spread of infection.
Read more coronavirus self-isolation advice HERE.
Mind have produced some excellent resources to help you look after your mental wellbeing if you do need to self-isolate. You can access this HERE.
Treatment for coronavirus
There is currently no specific treatment for coronavirus.
Antibiotics do not help, as they do not work against viruses. However, in some cases people can catch a bacterial chest infection along with the virus. If this is the case your doctor will recommend whether you need antibiotics for this.
Treatment aims to relieve the symptoms while your body fights the illness.
You’ll need to stay in isolation away from other people until you’ve recovered and are no longer a risk of infection.
Is there a vaccine for coronavirus?
At present, because this virus is so new and different it does not have a vaccine and needs its own to be developed. Researchers are trying to develop a vaccine and the World Health Organisation is supporting their efforts.
Vaccines against pneumonia do not provide protection against the coronavirus but they are still highly recommended to protect your health from other respiratory illnesses.
I need to talk to someone
LUPUS UK has services available for you to speak to someone else for support and non-medical advice;
We have trained volunteers, called Contacts, who either have lupus themselves or have a family member with the disease. You can chat with our Contacts over the telephone. They are not medically trained but are there to offer both emotional and general support and signpost you to someone who can advise you. The telephone service is confidential, and you can disclose as much as you wish. The support service is free apart from the cost of the call.
To request details of your local contact CLICK HERE
HealthUnlocked Online Forum
The community is available for free to anybody affected by lupus to get information, support and advice from other people who are similarly affected. We welcome people with any form of lupus (SLE, discoid lupus, drug-induced lupus, cutaneous lupus etc.) as well as those with associated conditions such as mixed connective tissue disease (MCTD) and undifferentiated connective tissue disease (UCTD).
The community discusses a wide range of topics including; diagnosis, symptoms, medical appointments, medications and support available.
To join the forum CLICK HERE
If you are in crisis, please call us on 01708 731251 or contact us by email at firstname.lastname@example.org
If you have more questions about the coronavirus, try reading:
NHS: answers to common questions about coronavirus
We are extremely grateful to Dr Chris Wincup (Senior Clinical Research Fellow at University College London) for his assistance in the production of this article.
Read the full thread below for more details on our social distancing advice.
— Department of Health and Social Care (@DHSCgovuk) March 16, 2020
This article will be updated as new information and guidance becomes available.
We’ve seen a lot of posts about #coronavirus (COVID-19) #anxiety, and we think they are super helpful, so we have created our own!
Please share this post and check on your loved ones through calls, text and social media. #LUPUSUK pic.twitter.com/vH11ijlifs
— LUPUSUK (@LUPUSUK) March 17, 2020
❗Important information for #patients with #autoimmune diseases, #lupus, etc.: DO NOT STOP #cortisone without medical advice ⛔ because you have heard of potentially more severe #COVIDー19 infection ❎: you would be exposed to a risk of flare and other severe complications🔻 pic.twitter.com/s2KUlS76Zg
— Laurent ARNAUD (@Lupusreference) March 15, 2020