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Coronoavirus may be particularly concerning for people affected by sarcoidosis. This information has been provided with the help of our Clinical Board member Dr Robina Coker, consultant in respiratory medicine at Hammersmith Hospital, London.

For all of our information on coronavirus, see our main coronavirus page.

Video Q & A

This video was recorded on 14th February 2020 and answers some questions put to us by sarcoidosis patients about coronavirus. You can read a transcript of the video below.

Government Advice

You can find the latest UK Government information ここに.



Henry: I’m Henry Shelford, chairperson of SarcoidosisUK. I’m here with Doctor Robina Coker, a SarcoidosisUK Clinical Board member and a respiratory consultant at Hammersmith Hospital. This video is a Q and A on Corona virus, or Covid19 as it’s now officially known, and in particular talking about how it relates to people with sarcoidosis. We keep hearing in the news that the people who are most at risk are those with underlying conditions or the very young or old. And sarcoidosis is an underlying condition and so we really care and are concerned about the potential impact. And personally I know that since my diagnosis I always go down harder with any lung infection. I have two young kids age one and two, and so I personally care very much about learning about this. And as a side note I live in China Town, which needs support right now. I’m thrilled – thank you so much for doing this. I think it’s really important.

Robina: Thank you for asking me.

Henry: Robina is a consultant in respiratory medicine, with a specialism in sarcoidosis here at Imperial College’s Hammersmith hospital. She is a doctor two times over so she is medical doctor and a PHD Doctor. The PHD was investigating the molecular mechanisms underlying the development of lung fibrosis so very important in sarcoidosis and other interstitial lung diseases. She did that at Natural Heart and Lung Institute in UCL. She’s also Clinical Director of the National Institute of Health Research in this region. She has a budget of 14 million into research and she’s published papers specifically on travelling with a lung disease. We honestly couldn’t have a more ideal person to ask these questions and we’re very grateful so thank you. Now before we go into the questions, and if you have questions, please post them as comments on the video and we will be going to them and we’ve had some sent in, I am going to do a quick overview of the statistics of Covid19. So as of right now, there are 64,447 confirmed cases and the World Health Organisation has designated it a global emergency but one that can be contained. The vast majority are in mainland China. There are only 218 cases outside it. They’re have been 1384 deaths with two outside China, one in the Philippines and one in Japan, and 7007 people have confirmed as recovered. The NHS in the UK has tested 2521 people of which nine have been positive and either have recovered or are in quarantine. We are currently 12th list of countries of Coronavirus, Japan is 203 with 174 of those on a single cruise ship, which you may know of. Singapore: 50, Thailand: 33, South Korea: 38, Taiwan, Malaysia, Germany, Vietnam with 16. Australia: 15 US: 14 France: 11, and then us at 9. There were two jumps in the numbers yesterday. A jump in the number of cases and a jump in the number of deaths and that was all in China in Hubei province due to a change in the diagnosis system. So it is not a change in the actual disease. Previously you needed a positive viral test but quantities of those tests are limited and the processes to do those tests are limited. So they’re now using a clinical test plus a CT scan and that’s caused a jump in the numbers. However, and this is very important, those new numbers don’t change the proportions of the disease. So the mortality rate is currently 2 percent and that’s of the confirmed cases versus the wider number of cases which obviously includes the unconfirmed. WHO and others are very keen to make sure that that part is said. WHO have study the data of 17,000 cases and have found 82 per cent developed mild symptoms, 15 per cent developed severe symptoms and 3 per cent became critically ill. And this is the point where I start asking you questions. So we’ve just talked about the symptoms. What are the symptoms of mild, severe, critical?

Robina: So the main symptoms seem to be a dry cough and a high fever. And not so much in the way of runny nose, sneezing and so on. So those are the things to look out for. Obviously they’re not specific. They could be mimicked by ordinary flu but it is specific that dry cough and high fever that people just need to be aware of.

Henry: Okay, which is quite different from a cold?

Robina: It is indeed, absolutely and you might at this stage, I think you would expect somebody to have had contact or possible contact with a known case or have returned perhaps from a country which is on the high-risk list. From the UK government there 9 countries on the high-risk list, including China.

Henry: Actually that segues beautifully into the next question. How is it transmitted?

Robina: Yeah, so it’s transmitted by inhalation of aerosol droplets.

Henry: Does that have to be off a cough or can it be off the breath of someone else?

Robina:  It could be that someone breathed all over you. Yes, absolutely. The feeling is that you need to be in quite close contact with somebody for at least 15 minutes to be at risk. So one to two meters and 15 minutes.

Henry: Is why the bus drivers taking the people from the plane they didn’t need masks?

Robina: That’s right. If you notice the passengers were kept well towards the back and they had a lot of Coaches. That as the rationale.

Henry: I thought it was also quite a good rationale in terms of conveying to people not to panic and not to overreact. I thought that might be part of why that decision to have extra coaches and no mask.

Robina: Yes, absolutely. yeah.

Henry: And so people breathing, but what about hands and touching stuff.

Robina: Yeah, so I don’t think we know exactly how long the virus can survive on hard surfaces but certainly minutes to hours I think is the answer. So I think you want to try and avoid contact with infected surfaces certainly and the advice at the moment is to be really meticulous about washing your hands. Most of us touch our faces or our eyes around 20 times an hour.

Henry: I’m now trying not to do it.

Robina: Yes, that is one of the main risks is that you touch an infected surface and then you touch your face or your eyes. We all do it all the time, so we need to be really meticulous about hand hygiene. We need to be washing our hands regularly and trying to avoid touching our faces when we’re out and about.

Henry: How does something like that help?

Robina: The alcohol gel, absolutely.

Henry: That was actually a question sent in it.

Robina: It’s a very good question. The advice is that washing with soap and water is the best. It is the most effective.

Henry: That’s partially because it removes the dirt that might have bacteria.

Robina: Absolutely, so where you possibly can you should wash with soap and water and wash your hands very thoroughly and dry them thoroughly. If you’re out and about and you have no other option then obviously you can use alcohol gel. And if your hands are visibly clean then it’s reasonable to use alcohol gel.

Henry: And alcohol gel will, obviously it sold as anti bacterial it will kill the virus.

Robina: Yes, it will be effective, but it’s not as effective as soap and water.

Henry: Okay, good know. Yeah and presumably then drying your hands, you should dry them well afterwards.

Robina: Yes, with an air dryer or hand towels.

Henry: Great. Now, that might be the answer but obviously we’ve had a lot of questions, ‘how do I keep myself and my family safe?’.

Robina: Yes well at the moment there has been very effective, contact tracing for the affected cases and I think we can see the success of that in that we can identify where each of the individuals who have tested positive in this country have caught the infection from. So at the moment, it’s not obviously widespread. Now that could change because we don’t know how many people are coming in to the country who may have been infected and haven’t yet developed symptoms or indeed may not develop symptoms but might pass it on. So obviously the concern is if this becomes more widespread, how do we try and prevent ourselves from catching it? So I think the first thing is really effective hand hygiene – so being aware of where you’ve been, washing your hands when you come off public transport or into the house. Certainly before eating as you’d usually do after going to the bathroom, but really being meticulous about that. I think the other thing is that if this becomes more widespread, we do need to think about perhaps minimising contact with crowds. That’s easier said than done and that’s sort of a lifestyle choice because you may really want to go to go to a football match. So I’m not saying you shouldn’t go out and enjoy yourself, but if this infection were to become more prevalent and more widespread, I think if you are really concerned about catching it you would want to avoid crowds. And of course that is the rational for the Chinese authorities limiting movement of people in Wuhan and other Chinese cities.

Henry: So at what point should someone be concerned and calling the NHS 111 number?

Robina: So I think if you have returned from one of those countries, nine countries, on the UK government’s high-risk list and if you were to develop a dry cough and a fever, then you should definitely call NHS 111. Of course it’s important to emphasize that that is the recommended advice, that you should self isolate and stay at home and not travel to A&E where it will be crowded full of other people who are ill and may be immunosuppressed. So you want to stay at home, ring 111 and take advice from there.

Henry: Okay, great. That actually answered the last pre-question from us which was what I should I do if I’m concerned. I think a part of that is call 111 and don’t do what I think someone just recently did which is what take Uber to the urgent care or the A&E clinic where there people who are ill who really need not to get at Covid19 and be exposed to multiple issues. It is to call 111 and follow their advice. So we’ve had some questions sent in which I’m about to about to grab and we’ll go through those and then we’ll go through the questions that have been posted by everyone. If you’ve got any questions, post them right now. You can see the I have the computer to look at them. Right, so these are these are our questions. So sent in by Susan, we’re starting with symptoms. ‘How do I differentiate between the effects of sarcoidosis, a flare up, and coronavirus?’

Robina: Yes well, obviously you’re not going to be able to do that absolutely specifically. I think it depends partly on how your sarcoidosis usually manifests itself when it flares. So if a dry cough is part of your symptoms when you flare, it’s going to be difficult, but it may well be that a high fever is not part of your symptoms when you flare. Now some people may be unfortunate and it may actually be that a high fever and dry cough is exactly how your sarcoidosis flares. I suspect that’s unusual. So I think the two together should just make you think could this be coronavirus?

Henry: Yeah. So hopefully you know yourself and if it feels very different.

Robina: Most people do know the symptoms that they get when they have a flare and it may well be that they’re quite distinct from the symptoms of Covid19.

Henry: Paul has sent a question in and it’s one our core questions as well I wanted to put in her and it is I think one of the things that worries people a lot is that we’re being consistently told that it’s a 2 per cent mortality rate but those particularly with underlying conditions and sarcoidosis would be one of those. We’re all at higher risk both of the disease and complications that might arise. So if you could talk to that?

Robina: I am not aware of any cases of patients with sarcoidosis developing Covid19 because we don’t have all the information as of yet but I think there are 2 reasons that people with sarcoidosis are more risk. First is if you already have pulmonary sarcoidosis then your lungs already have a degree of inflammation and possibly scarring or fibrosis and therefore they’re not, if you like, in the best shape to deal with a severe viral infection. That would be my first concern. Of course, some people with sarcoidosis don’t have lung involvement. It’s very common, but it’s not universal so that’s also something to think about. But the second aspect, of course, is for patients who are on medication, that medication per say dampens down the immune response, dampens down inflammation. And we know that people who are on immunosuppressant medication are more at risk of infection so I think those are two reasons. Yes, one does have to be concerned.

Henry: Okay. Really the only thing we can do is focus on prevention and making sure that attention is brought quickly if there’s an incident.

Robina: Yes, I mean there is no treatment at the moment. There may be more information about that in the future, but we don’t have anything at the moment so the emphasis is on prevention and you mentioned for instance that you have two young children at home and we know that children do spread infection quite rapidly and unknowingly.

Henry: So you’re saying I should ditch them?

Robina: No there’s nothing you can do about that but I do say to people if they’re having visiting grandchildren, for instance, that they might wish to, if those grandchildren are unwell, perhaps you know, say well, you know, granny or a grandpa is taking medications, which suppresses their immune system. Would you like to come next week instead? So sometimes it’s possible to avoid infected family members with any viral illness.

Henry: Fair enough, I know that with our kids were not taking them out to group play areas just to try and minimize that. That works very well with our next set of question is about precautions. So Helen wrote in and asked, should she wear a mask?

Robina: So the advice really is that masks are not effective and the reasons they’re not effective is that they’re not sufficiently tight fitting, there is no air filter and they don’t cover the eyes, which are also going to be exposed to any splashes or aerosol droplets.

Henry: So you can get a virus through your eyes?

Robina: Well splashes, through the mucus membranes and then you touch your eyes. They’re also quite difficult to wear for any length of time and they need to be changed frequently and then, of course they need to be binned appropriately and not just left lying around so the official advice is actually effective hand washing is much more effective than wearing a mask. The only thing that wearing a mask might do is stop you touching your face quite so much. It’s not felt to be an effective way of stopping infection.

Henry: And I thought one of the things we saw that was interesting a few days ago, was the Chinese doctors showing their faces, which have been dented by the mask which I think express the difference between a proper medical grade, for people treating people with Covid19, versus the ones we see people walking around in.

Robina: Yes, if you’re a member of staff or an NHS worker looking after patients, then you need to wear a proper fitting mask and that is fitted for you before you wear it.

Henry: We’ve got some questions from health professionals so we’ll come back to that, if we may. Hailey asked a question: does the alcohol gel work against the virus, and you said yes, but soap is better.

Robina: Yes.

Henry: We’ve had a few questions about the individual treatments. So with the different medication are some people more immunosuppressed?

Robina: I don’t think so not with the medications for sarcoidosis. I don’t think there’s any significant clinical significant difference in the amount of immunosuppression. The only exception I suppose is that steroids probably aren’t as effective immunosuppressants as some of the others like methotrexate, mycophenolate and azathioprine.

Henry: So those people slightly more at risk. That’s great because we actually had specific questions about those drugs so that’s great that you’ve answered that. And within a public space, Hazel said so beyond avoiding them if you feel like uncomfortable, are there any other precautions that you can take in a public space? So for instance taking public transport now as I expect to do, many of us do.

Robina: Well, washing your hands after you’ve left the public transport or after you’ve left the play area with the swings and the slides and so on, so that’s important. The other advice is to try and minimize the amount of hugging and kissing, which you may not be doing on the tube, but you might do in a public space with your friends and families. So that is the advice to try and reduce contact. It’s a difficult one because we’re social people and we like to mix and shake hands and hug and kiss, but that’s it.

Henry: So you continue to shake hands?

Robina: I am but I think if we if we saw a greater prevalence, we might just be a little bit more careful, which is, of course what’s already happened China.

Henry: And you’re still taking the tube? Is there anything that you at this moment of changed in your behaviour.

Robina: I’m more careful about hand washing after coming off the tube, I mean I usually do wash my hands, but I’m really thinking about it.

Henry: We had some questions from Lena and Paul, both working in healthcare, asking if there’s something they should do particularly as frontline healthcare professionals.

Robina: Yes, so I think the hand washing between patients is really important and I would emphasize the hand washing rather than using alcohol gel if possible. You might want not to shake your patients’ hands. Again I think this is if the infection becomes more prevalent. At the moment, it’s fine. Yes, it’s essentially the contacts of people who we know are contacts and so on and so forth. But if it became more prevalent, you might invite your patients to come in or see your patients and not shake hands with them. We could wear gloves and then dispose of the those.

Henry: The gloves It is important because there can be a tendency for people to wear gloves and then think, right my hands are clean, because they’re in gloves whilst forgetting obviously that the gloves have got dirty and need of replacing very frequently.

Robina: Yes, they do. They should be replaced between each patient if you’re going to wear gloves. They need to be taken off and disposed of appropriately in the right bin and you should think about using alcohol gel or washing your hands again in between before you put the next pair on.

Henry: Lina asked, she’s on methotrexate, should she be particularity concerned?

Robina: Well that’s very difficult because we don’t have any guidance for health professionals on immunosuppressants.

Henry: Yes, I think that’s why we’re getting questions.

Robina: It’s a very good question. I mean I think at the moment unless you’re working in a practice where there’s known to be an affected individual you should be safe. But if the disease does become more prevalent, I think it’s more of a concern and then I think you would want to be even more cautious and even more careful about handwashing, gloves, aprons and minimizing social contact with patients, such as shaking hands and so.

Henry: Now talking about interacting in hospitals and patients. We have a couple of questions on visiting hospitals. So Amanda asked she should be concerned about going to hospitals where people are being screened and treated?

Robina: No because those hospitals have very clear measures in place to isolate the infected individuals and keep the rest of the hospital population safe. So there’s no need for concern.

Henry: And Rob asked quite a complex question that he’s on azathioprine, prednisolone and hydroxychloroquine. Should he be concerned for himself or his son is being screened for cystic fibrosis?

Robina: Well, obviously Rob you’re on a lot of medication and we’ve talked about this – you will be more at risk from infection so there’s those prevention precautions are particularly important and they would be important for your son if your son does indeed test positive for cystic fibrosis.

Henry: On that point of prevention, Betsy asked will pneumonia vaccinations give me a little extra cover in terms of the complications that might happen.

Robina: I’m not aware that there’s going to be any protection. I have to confess here as we’ve said before I’m not an infections specialist and I’m not a public health specialist, but I’m not aware that there is any vaccination that is effective.

Henry: I think she’s asking when you become very ill, sometimes it’s something else that gets you right, so could this help reduce the number of something elses.

Robina: I don’t think we know the answer.

Henry: I think the charity’s position is that vaccines are good.

Robina: Yes, and when we get a vaccine it will be great but we’re not going to get a vaccine for a while.

Henry: But we do advise people every year do the flu vaccine.

Robina: Absolutely.

Henry: And other vaccinations are very sensible. I personally had pneumonia one in the past, have you?

Robina: No.

Henry: I’d recommend it. Although I think it’s advised particularly for people who hit a certain age. This I think is a question people will be thinking about, very hard, particularly after what we’ve just been talking about immunosuppression. Both Tony and Barbara asked, I’m taking immunosuppressants, should I stop taking them for a period or request a change in medication until this period has passed.

Robina: It’s a very good question. I would say certainly do not stop taking anything without consulting your sarcoidosis health professional. I think we should all as health professionals looking after patients with sarcoidosis be always reviewing immunosuppression at every visit and thinking in every individual, regardless of what whether there’s Covid19 or anything else around, what is the risk/benefit ratio of continuing with the medication? Do we need to continue at this dose? Could we reduce the dose? So I think it’s good practice clinically to always be reviewing the doses and whether that medication is needed but I don’t think you should stop specifically because there is a new infection that’s been identified. I think it’s perfectly reasonable to discuss it with your health care practitioner, but it all depends on the indications for that treatment in the first place, and I would say that if your sarcoidosis is severe enough to need that treatment, then you probably do need it. But again it’s a discussion to have on a case by case basis with your physician, but certainly I would not recommend anyone to just stop or cut down their medication without discussing that with a health care professional because they will have access to all their results, physiological results, radiology and blood tests and they will be able to discuss your symptoms.

Henry: Okay great. It will be difficult for people to talk to their consultants in a short period, appointments tend to be a bit away, with a big gap, so I think the core of your advice is that the sarcoidosis is the important thing.

Robina: It is. I mean, if you thought it was severe enough for you to need additional immunosuppression then I would suggest you still need it.

Henry: And there are also very important elements about not changing your drug dose.

Robina: Yes, without medical advice.

Henry: Particularly stopping very quickly can be very detrimental.

Robina: Yes, you wouldn’t advise that. And of course, if people can’t get gold of their consultants, there may be an ILD Nurse who can help as well.

Henry: Okay. That was good advice

Henry: Our last of the questions sent in earlier: I’m planning to travel to internationally to a country that has been affected and I don’t know what that means because we obviously are one of those but we’re quite low on the list comparatively and I think comparative to China everyone is very low on the list. You know you’re looking at over 60,000 verses just north of 200 people. There’s just a huge quantity of difference. Should I should I travel and if I do what precautions should take?

Robina: I think that’s a very good question. It’s difficult because I didn’t think anybody can make that decision for you. You have to think about your own circumstances. Are you at increased risk of infection or are you taking immunosuppressant medication? Where are you going? How long you are you going to be there for? What is the purpose of your visit? How important is it that you go now? If it’s just for holiday, would you be happy deferring that holiday? Again, It’s going to depend on your travel agent, you airline, whether there’s any flexibility in the arrangements. I’m not aware that insurance companies will reimburse at the moment for travel to China and other countries. That’s going to have to be considered and so I didn’t think I could give generic advice, but I think it just depends on how concerned you are about it. Nobody can make that decision for you, but you might want to explore those options.

Henry: And in terms of insurance it’ll depend on your individual insurance. Normally, it depends what the FCO’s travel advice is, which at the moment is currently don’t travel to China and be careful in other countries.

Robina: So if it’s China, it’s much clearer. I think it’s not as clear for the other countries.

Henry: Would you go to China right now?

Robina: No, I wouldn’t, but I’d love to go to China sometime.

Henry: I enjoy travelling there. I’m on to the Facebook questions now so Suzanna has asked: I’ve heard that hydroxychloroquine is protective against the Covid19 virus to some extent, is this true?

Robina: Well, that’s very interesting. I haven’t seen that data, so I honestly didn’t think I can answer that question. I’m interested to see where that data comes from.

Henry: We’ve got a lot of people talking about how pleased they were putting this on and we had a question about what level of mask but I think we don’t…

Robina: We’re not recommending masks.

Henry: Yeah. Actually, I think that’s all. I think we did a good job of asking all the questions that we were asked of. What we will do is any questions that we’ve missed or that come in later, we’ll drop Robina a line and answer those. Thank you very much everyone for joining us. Thank you so much for doing this.

Robina: Thank you for inviting me.

Henry: I think it’s been very important, I think it’s helped a lot of people to understand.

Robina: Well I hope so because it’s obviously an anxious time, inevitably.

Henry: Yeah so thank you everyone. Thank you everyone for your support of SarcoidosisUK and thank you for your support. Thank you for being a part of the clinical board. We can only do this with everyone’s support. If you’ve got any more questions, let us know and we’ll ask

Robina. I hope you found this helpful. We are going to be doing more videos on different aspects so do follow our social media and sign up for our newsletters. Yeah, thank you very much for joining us.