020 3389 7221 info@sarcoidosisuk.org
Select Page

CORONAVIRUS – VIDEO EIGHT

Watch our latest live Q&A video with SarcoidosisUK Clinical Board member Dr Robina Coker, consultant in respiratory medicine at Hammersmith Hospital, London. 

To watch our other coronavirus Q&A videos, see our main coronavirus page.

Video Q & A

This video was recorded on 10th November 2020 and answers some questions put to us by sarcoidosis patients about lockdown, shielding and vaccines.

 

Government Advice

You can find the latest UK Government information here.

Transcript

Charlene: Good afternoon everyone. Thank you so much for joining another one of our live Q&A sessions. Today I’m going to be joined by Dr Robina Coker and she is going to be answering all of your questions around covid, lockdown and shielding. We’ve had a lot of questions sent in so we will be going through those and if you would like anything more answered during the live stream then leave a comment in the comment section below. We’ll be sifting through those and trying to get through as many as we can. Firstly, I’d like to start off by just introducing myself. I am Charlene Pink, the Marketing and Fundraising Executive for SarcoidosisUK. I’ve been fortunate enough to be with the charity for around 2 months now and I’m thoroughly enjoying the role so far. It’s great to be part of the sarcoidosis community and I’m really excited to be looking at ways that we can support you all and raise more funds for sarcoidosis. On that note, I’d like to start off by just saying that at the moment obviously because of covid, the entire charity sector has been struggling and we are experiencing the same unfortunately. We can’t host any of our usual events so we’re having to look for other means to be getting funds in at the moment to continue doing our vital work and one of the main ways we can do that is by you personal donations so if you’re watching this video and you are able to contribute in any way, we would thoroughly appreciate it. The link will be down below in the comments to direct you to our webpage where you can donate to SarcoidosisUK. Any amount will be really truly appreciated and it would mean that we can continue doing our vital work, which is around researching sarcoidosis, raising awareness through Q&As like these and supporting those living with the condition. So that’s a little introduction from me, thank you very much, it would be thoroughly appreciated. Without further ado I’d like to introduce Dr Robina Coker. Thank you so much for joining us Dr Coker, how are you?

 

Robina: I’m very well thank you Charlene, thank you for inviting me.

 

Charlene: Thank you for having us, we’re absolutely privileged to be able to have you here today with us. Just a little introduction on Robina. She really is the best person we could be speaking to today about the new covid shielding measures. She is a consultant in respiratory medicine at Hammersmith Hospital and Dr Coker has run the sarcoidosis service at Hammersmith Hospital since 1999. It’s actually one of the largest groups of sarcoidosis patients in the country, so very impressive with that. In addition to her work as consultant and honorary senior lecturer in respiratory medicine, she has been clinical director of the NIHR Clinical Research Network in North West London since is was establish in April 2014 so as I said we’re extremely grateful to have her join us today and really is truly the best person to be answering these questions so thank you Robina.

 

Robina: Thank you Charlene.

 

Charlene: So without further ado, as I said we’re going to be going through the questions that have been sent in already and then going on to some of the questions that have been sent through during the live stream so do comment them down below if you’d like anything answered. We’ll start off obviously by just discussing the new measures that have come into place. As everyone knows we’re in a national lockdown but in addition to that, on Wednesday evening, the government did announce that vulnerable people have gone back into shielding, so that’s the latest update and we’ve had lots of questions around that and everyone would like some clarity because I think there’s been some confusion  for people with sarcoidosis whether they’re included in that and whether they should be shielding or not. So from your point of view Robina, from your understanding, people with sarcoidosis, are they all going to be included in these shielding measures?

 

Robina: No, my understanding is that people who are immunosuppressed, who are taking medication to supress their immune system, which will include some but not all sarcoidosis patients, and patients with severe lung disease or cardiac disease would be classed as clinically extremely vulnerable and would be advised to follow additional measures above those that the rest of us have been asked to follow, so the “hands, face space” that we’ve all become very familiar with. As you know I’m sure, sarcoidosis is such a variable condition, it can affect so many different parts of the body that it’s really very difficult to say there’s a one size fits all approach. The new government advice does allow for clinician discretion in deciding whether somebody is clinically extremely vulnerable and I would encourage anyone who is concerned about that or confused to have a chat with their specialists because they’re the best placed person to advise on whether they fall into that clinically extremely vulnerable group.

 

Charlene: Of course yes thank you. So as you said, sarcoidosis can affect people in different ways, which kind of leads nicely onto another question. Some people have been saying that they have received letters and then others haven’t. Is that down to the fact that some people may be on that vulnerable list if their sarcoidosis affects their lungs for example because they would be more severely impacted if they were to catch covid.

 

Robina: Yes I think that’s correct and it will depend probably on the state of their records back in February/March of this year. Not everybody’s records will have been updated so there may have been some changes in conditions since then so yes absolutely. I think if you’ve had a letter and you’re not sure whether it still applies to you then absolutely contact your specialist. If you haven’t had a letter and you think, “actually, I think I should have had a letter”, then I think it’s worth either contacting your General Practitioner or your specialist just to see what is the situation.

 

Charlene: Of course, yes I think that’s definitely good advice to highlight. If you haven’t received a letter and you are confused, talk to your medical consultant. They’re the ones who know your full medical history and should hopefully be able to advise further on that. So just in terms of people who haven’t received a letter then, I know that we’ve had a lot of feedback saying that people are waiting for quite a while for their GPs or medical consultants to come back to them and they might be having to go into work at the moment while they haven’t got their letter. In that situation, is it best for them to have a conversation with their employer and just highlight the condition and stress the fact that they should be shielding.

 

Robina: Yes, I think so. I would hope that most employers now are fairly appraised of the situation. It’s not like the situation in March where it really was very new for everybody. We’ve all been playing this game for some months now so I think most employers are aware and most employers are sympathetic. Many employers of course will also have and Occupational Health department and it may be worth having a chat with them if appropriate. So yes, I would hope that that would sort out most of the problems.

 

Charlene: We just need to highlight as well the position is definitely that somebody who is on the shielding list should not be going to work at the moment. Obviously if you’re able to work from home then do so but if that’s not possible, we’re definitely of the position that you should not be going in, is that correct?

 

Robina: Yes that is correct.

 

Charlene: And that is all outlined on the www.gov.uk website which we have reposted to our SarcoidosisUK Facebook page, you can find it pinned right to the top so if you do want to read the government guidance straight from the website, you can do so by following the link on our Facebook page. We’ve had a question from someone who phone the charity a couple of days ago talked about their sarcoidosis being in remission. So they haven’t been affected by it for years. Obviously we are aware that sarcoidosis can have flare ups, so she was conscious of that but at the moment it’s not affecting her in any way and it hasn’t for several years. Would you suggest then that someone like that should be shielding?

 

Robina: That’s such a difficult question. Obviously I’m not going to take the place of that particular person’s specialist. So they should talk if they’re still under specialist care but as you know many people with sarcoidosis stay in remission and can stay in remission either for many years or indefinitely and it would be very bad luck if it flared during a pandemic. It might of course as you never know and stress of course can make these things worse but there’s no reason to think particularly that it will flare, so if they’re very well, I would hope that by following all the usual precautions, if they really can’t work from home, if their workplace is covid-secure and their employers made the efforts to arrange that, then I would have thought that they should be able to go to work but follow all the precautions that everybody else has been advised to follow.

 

Charlene: Of course, yes so as you state it’s just really important that whether you’re classed as clinically extremely vulnerable or not, that we all do keep following the guidance that’s set out, it’s in place for a reason and hopefully that will put us right on the path to getting over this in the future. We’ve also had some people comment that are watching live so thank you so much for joining in. Paul from Facebook has put a similar note saying “can I return to work with pulmonary sarcoidosis?”, their occupation health will not allow this, they say the condition is too unpredictable, so in that case would you say it best for them to be shielding?

 

Robina: Yes I think so, I think if that’s what their employer has said it sounds as though their employer is supportive and sympathetic and if you have significant lung disease you will be at greater risk. If you are also immunosuppressed then you’re at additional risk. So yes, I think if you possibly can, work from home or don’t return to work.

 

Charlene: Yes of course, so as you mentioned there if you’re have immunosuppression, and different medication will have different effects as well. Michaela is watching live, thank you for joining Michaela, and she asks would hydrocortisone tablets mean that shielding is required. She hasn’t been told anything as of yet and the tablets are for adrenal insufficiency not her sarcoid treatment.

 

Robina: Yes, my understanding is that hydrocortisone replacement is in such low dose, it’s there just to replace the normal adrenal function and therefore that shouldn’t be a problem, but I think again if there’s any doubt, contact your specialist just to get their input on that.

 

Charlene: Brilliant thank you, so we’ve also understandably had a lot of questions come in around the new vaccine news so as we will have all seen on the news, we’ve got very promising hopes of a vaccine being introduced very soon. The UK has got a bulk order batch waiting, just going through those last approval stages. So we’ve just had some questions around that vaccine really. People are wondering what that vaccine will mean for people who do have sarcoidosis and are classed as clinically extremely vulnerable. So Sheila asked “will the new vaccine be viable for sarcoidosis sufferers as our immune systems are already in overdrive and the vaccine works on increasing immune systems”.

 

Robina: Sure, it’s a very good question and there are still a lot of unanswered questions about the vaccine. We don’t have all the data published yet. We haven’t quite got all the safety data. So there’s a little way to go but I’d just remind everyone that we normally do recommend that people with sarcoidosis have the seasonal flu vaccine and that doesn’t normally present a problem. In fact, it may be that with some autoimmune conditions that there is less of a response to flu vaccination than in normal controls, it depends a little bit on the condition. There aren’t a lot of data in sarcoid, but there’s no reason to think that covid-19 vaccines might not be suitable for patients with sarcoidosis. At the moment obviously we’ve got quite limited data.

 

Charlene: Yes of course, I think that’s the thing. We’re delving into the unknown a bit really. Of course there have been hundred of vaccines made previously that we can base our assumptions off but until the drug is actually here and in use, it’s quite difficult to judge isn’t it at this current stage? From your medical point of view, people who are on immunosuppressants, do you think the vaccine would affect them mores severely than someone was not.

 

Robina: So we normally recommend that people who are have immunosuppression don’t have live vaccines, you’re probably familiar with that. The obvious one for instance is yellow fever. So we don’t recommend that people who are immunosuppressed have yellow fever vaccination, so it is something that needs to be discussed, before considering vaccination. Now we haven’t got any live covid vaccines that I’m aware of at the moment. The MRNA technology is very interesting, so the Pfizer vaccine uses MRNA to stimulate the body to produce a little bit of protein that mimics viral protein and thereby stimulate an immune response and my understanding, and I’m not an immunologist, but my understanding is that it’s the first time that technology has been used in vaccine production, so it’s very interesting and very exciting. It is new technology. So I think we just probably need just a few more weeks and a little more data just to see how that’s going to pan out. It’s not a live vaccine, so it’s not one of the vaccines that we would normally say is unsuitable for people who are immunosuppressed.

 

Charlene: Ok so unfortunately it is just a bit of a waiting game until we find out more and get those results in. Yeah completely understandable. Theresa asked, she noted that the vaccine that’s being developed by Pfizer uses T-Cells. Theresa says, I read some time ago about sarcoid research that asked whether T-cells were in some way responsible for sarcoidosis, could there be any implications from the use of T-cells in this vaccine for sarcoidosis sufferers.

 

Robina: Yes, it’s a very good question. The thing is that there are lots of different types of T-cells and there is a specific sub-group of T-cells that are involved in the inflammatory response in sarcoidosis and the vaccine will be stimulating a different specific subset of T-cells to react to the viral protein, so I don’t think you can extrapolate. They’re different responses.

 

Charlene: Do you think with the vaccine, this might be something again that we just need to wait and see but, do you think that sarcoidosis patients, and possible other people who are classed as clinically extremely vulnerable, do you think that they’re going to be given priority for this vaccination?

 

Robina: Yes, well, my knowledge on this Charlene is probably much the same as yours from watching Chris Witty talk about this. So my understanding is that it will be age dependent to start with. So they’re going to start with the very elderly and the frail and those in care homes, residential homes and possibly the care workers looking after them, so that they are protected, and then I understand that the plan is to move down the age groups and the clinically extremely vulnerable groups. Now quite how they’re going to do that, I don’t know because I think we have enough to vaccinate something like 20 million but remember you have to have 2 doses of this vaccine, so whatever it is that the UK government has purchased, we only have half effectively. So younger people with mild sarcoidosis may not in fact be invited to take part at this stage. I would expect it was people with more severe lung or heart disease, or on high doses of immunosuppression or possibly older patients who would be higher up that priority list.

 

Charlene: Okay, it’s another one of those things, as it goes along I’m assuming the government will be ordering more, but at the minute as you understand it will be done by age brackets and people who are in need of it most. So Mike has put in a live question, thank you Mike for joining us. He’s asked through our Facebook comments, “do you think that GPs will have the infrastructure, including the freezers, to store and deliver the vaccine?”, because as we know it has to be stored at incredible low temperatures doesn’t it?

 

Robina: Yes that’s also a very good question. So I was discussing this with one or two people last night actually. So you have to keep it at minus 80 which is a temperature that none of our domestic freezers reach, you normally only get minus 80 degree freezers in laboratories and as I understand it, it’s only allowed 3-5 times out of that temperature before it reaches the temperature so it really has got to be protected all the way. I would imagine that what they’re looking at, and I know that the government have consulted a number of organisations, including the military to look at the logistics of this, I imagine what they’re looking at is some sort of mobile minus 80 freezer hub arrangement and the vaccine can then be distributed from these hubs to the patients. I can’t see every GP surgery up and down the country acquiring a minus 80 degree freezer. I don’t think that’s how it will be done and it may be that people will have to travel to a different centre for their vaccination but I haven’t seen any details yet and I don’t want to pre-empt all of the plans that are going on in the background.

 

Charlene: No, of course. Thank you for answering as best you can. It’s going to be, I’m sure, a challenge, but we’ll be staying tuned to see the latest as that vaccine develops. In terms of your patients, would you personally be advising them, even if they weren’t necessarily classed as clinically extremely vulnerable, further down the line once there is more availability of the vaccine, would you be encouraging people in the future to be getting that vaccine as a precaution?

 

Robina: I think, depending on the safety data, depending on our experience at that stage, and depending what other vaccines are available by then, in principle I support vaccination. I think it’s desperately important and we need some way to get us out of repeated cycles of lockdowns and releasing lockdowns because the effect on the economy and all of our mental health is extreme so we have to find a way out of this and vaccination is definitely part of that solution. So yes in principle. I would hope that in the next few months we would have more data, we would have potentially more vaccine candidates and we’d be better informed on the best vaccine for different groups as happens now for the seasonal influenza vaccine.

 

Charlene: Brilliant so we might have a few more vaccination questions come in as we go through the live stream but for now we’re just going to jump back again and some people have sent in their own experiences at the moment and questions they’d like answered around shielding again. So obviously the first time with lockdown, we know that the government and the NHS, they compiled this shielding list and might have acted on the side of caution in terms of including people who might not actually need to be on this list because we knew a lot less about the virus, we didn’t know how it would impact people with different diseases and, as said yes, possible acted on the side of caution in getting more people on the list because rather have more people shielding than miss out on certain diseases put them at risk, so this time round then, would you say that if people haven’t received their letter, that it might be actually due to the fact that we just have an enhanced understanding and they might not actually need to be shielding, regardless of the fact that they were first time.

 

Robina: Well it might well be, but I wouldn’t make that assumption. We know that letters sometimes go astray in the post, we know that computers and systems are not perfect. So if you have significant lung or heart disease or even neurosarcoidosis and you’re on medication for that and under regular specialist care, then I think if you haven’t received a letter, by all means have a word with your GP, have a word with your specialist. Just check that you haven’t been missed off that list by mistake.

 

Charlene: And then that kind of leads on to the topic of people who have been asked to shield but have children for example. Schools are still open as we know and the position on that is that the government is saying that it’s still alright for children to be able to go to school, if a parent or someone else in the household is on the shielding list.

 

Robina: It’s very difficult and I’ve had to advise a few families in this situation. We just know the harm to children of not going to school is really significant and the government as you know is very keen to protect children, their education, their development, their social interactions and so on. So schools are remaining open at the expense of many other facilities that are now closed. It is, as you say, very difficult. Now most schools I believe are working really hard to keep children in their bubbles, their small groups. They’re being very careful about that, but obviously there is an increased risk as soon as you ask children to mix outside their households and that’s just inevitable, so I think what you do then depends on your own approach to risk, your own condition and the facilities that you have at your disposal. So I know some families where children come home, change their clothes, clothes are washed, they change into clean clothes, they wash and they have very little contact with their clinically extremely vulnerable parent. Maybe they don’t eat their meals together. They bath and wash at a separate time. That all depends on the age of the child. It depends on who else is there in the household to help and it depends on the understanding of the child and how easy it is for everybody to do that and how much space you’ve got. So I think people have just got to look at what they can do and what they feel comfortable with in the circumstances. Again, I don’t think there’s a one size fits all approach. It would be very much easier if there were. I think it’s very difficult.

 

Charlene: Of course, I think that’s one of the key take aways from a lot of the questions we’ve had a in. We need to emphasize that it isn’t a one size fits all and everyone can be impacted differently whether that’s if you’re included on shielding or not, the way that sarcoidoisis impacts you. It’s important to speak to you medical consultant if you do have any concerns. Of course it’s always better to act on the side of caution but it’s very difficult to put that blanket over everyone saying “this applies to the whole group” when it’s just not the case is it? In terms of then interacting with other in the household, the government website currently says that if possible to try and maintain distance of 2 meters from others in your household if possible. Do you see this being something that’s going to be sticking around for the foreseeable future? Obviously the shielding is expected to just go on until the 2nd of December. Is there a possibility of this being extended and what impact could that have on people who are being asked to shield?

 

Robina: It’s very difficult isn’t it Charlene. I think the government was desperate to get us all into lockdown so that we might have a bit of respite over Christmas and the New Year when families like to get together and it’s a very important time for families. The numbers seem to be relatively encouraging so one could be cautiously optimistic. I rather doubt it will be the only lockdown before the Spring. You could envisage a situation where we have a partial release before Christmas and the New Year and then we’re obliged to all go back again. I don’t know. It may be that the vaccines will start to come onstream and make a difference. We hope that they do but there are a lot of unanswered questions. We don’t know whether they stop people carrying the virus who have no symptoms. We don’t know if they prevent severe cases and we don’t know how long the immune response lasts so it is very tricky. I think it’s best on the whole to be prepared mentally to do this for longer if necessary rather than pinning ones hopes on early December for an end. I think it’s better to be realistic. If you know you’re in it for the longer haul, or you may be in it for the longer haul, you may be able to manage expectations and actually say “what can I cope with realistically for 12 weeks on and off over the winter?” when the days are shorter and it’s often wet and it’s colder and it’s not as easy to meet people in the garden or outdoors. It’s just difficult, it’s just not as easy as in the Spring and the Summer when we had fantastic weather so I think it’s also about just managing one’s own expectations and just being realistic.

 

Charlene: I think that’s a very important thing to highlight. Lockdown really can impact people in many different ways and mental health is one of those ways that it can have a really detrimental effect if people aren’t able to socialise with others or communicate effectively. So if you do feel like you are struggling we have got some resources available on the SarcoidosisUK website. Please do head over there and look at the support section. We’ve got some really useful links to services that can help you if you’re struggling with mental health or just need someone to talk to during this time because it can have a real impact. I know myself and probably you as well, we’ve all probably experienced it being locked inside, it does have an impact doesn’t it? It’s important to remember during these times to keep speaking to people and keep that communication going even when we can’t see people in person. I think it’s really important. Thank you, so just in terms of people who are shielding, do you think that there might be a risk that their immune system might become lazy as such, or not be able to cope with some of the challenges that might be thrown their way in terms of other diseases and things. If they’re staying inside for prolonged periods of time and aren’t exposed to those everyday germs as such, do you think that that could have an impact on their immune system and their ability to cope.

 

Robina: I wouldn’t have thought so because in the life of an individual, it’s a relatively short period and you will have already during the course of your lifetime built up some immune system memory if you like. One of the benefits of lockdown that we’ve seen, and we’ve seen this not only in sarcoidosis but also in patients with other lung diseases such as asthma, COPD and bronchiectasis is that people are getting fewer lower respiratory tract infections and requiring fewer antibiotics and that’s a really positive outcome so no I don’t see any adverse effects from that.

 

Charlene: It’s nice to look at the positives which actually leads us on to our next question. We’ve had a question come in from Stewart who’s watching live, thank you so much for joining. He says “do you feel that the amount of scientists looking at the immune system and T-cell response, that there may be a benefit to conditions such as sarcoidosis in the future. Never before have so many experts looked at the immune system albeit in reaction to covid at the moment. Could that actually have some implications for us in the future or other immune diseases?”

 

Robina: Yes I would hope so. I think that’s absolutely right. It has stimulated interest in the immune response in a way that perhaps nothing else has in the last 100 years. I think the other really positive thing is that, and it’s not positive for the sufferers, but it might be positive for sarcoidosis, is that this new phenomenon of long covid, with a whole host of different symptoms, but particularly this very severe chronic fatigue syndrome, for want of a better term or description, we’re developing ways of addressing that in very multi-professional, multi-disciplinary way and I would hope that longer term, that might give us help for sufferers from similar symptoms of sarcoidosis because it has always concerned me that we don’t have very good resources for people with chronic fatigue and some of these other very ill-defined symptoms and it might just be the fact that we have now a cohort of people unfortunately with long covid, and we’re having to address some of these, might mean that there are more resources in the future for people with sarcoidosis.

 

Charlene: Yes so it’s definitely promising isn’t it, so that would kind of be a bit of light at the end of the tunnel and something positive to come out of all of this. Just going back to the long covid then. In terms of the symptoms and things, do you have any idea about how many people are actually experiencing those prolonged symptoms who do contract the virus, whether they have sarcoidosis and other diseases or not? Is it quite a small percentage? Is it a minority?

 

Robina: I haven’t looked at the data recently and my understanding is it was something like 1 in 20 people who had covid went on to experience prolonged symptoms for at least 6 weeks. Now some of them, after 6-12 weeks get better but obviously we hear in the news about some people who have had much more prolonged illnesses who are still very unwell having contracted the disease in March or April of this year. So there’s obviously a subset for whom it goes on longer. There aren’t any data to suggest that sarcoidosis patients are more susceptible and in fact there’s no signal really to say that sarcoidosis patients do particularly worse but those are the data we have at the moment. What I don’t think I’ve seen a breakdown of long covid in terms of age. There is a feeling sometimes that young people are particularly prone but that may just be because they’re the ones that recover. It’ll be biased depending on whether you look on covid in older people, older people are more likely to die. Younger people are more likely to survive so it may just be biased in that sense. I don’t think we can say much more at the moment.

 

Charlene: Perfect, so we’ve also had a couple of phonecalls and questions coming in just a bit more around returning to work. I think a lot people find that their employer might not understand sarcoidosis fully and therefore they’re not really in a position to understand their need to shield. So if you do find yourself in that position and you need some more information to provide to your employer we have some really useful leaflets. You can find them on our website. You can download them as a PDF or if you would like hardcopies then they are available to purchase in the shop as well. We’ve got one specifically for employers that explains sarcoidosis. Because obviously a lot of people have never heard of it have they and it’s something that we’re seeking to raise awareness of through the work that we’re doing. So if you find yourself in that position then do definitely take a look at that leaflet. And there are others to about sarcoidosis and how it affects different parts of the body so definitely worth taking a look at that if you find yourself having a bit of trouble with your employer and they need an enhanced understanding. So moving on then, we’ve had a question from Gareth on Facebook, thank you Gareth for commenting. He says, “I really believe in Vitamin D and that it can help to protect our body and lungs. If my blood tests show that I am normal would you suggest that I’m okay to take this?”

 

Robina: Yes that’s another good question. The tricky thing is that in some people with active sarcoidosis they will produce more of the active vitamin D and that is not normally measured by routine laboratory assays and when you produce a lot of active vitamin D it suppressed production of the vitamin d precursor, which is what most routine laboratory assays measure. So when your GP measures your vitamin D, they’re measuring the inactive vitamin D, not the active vitamin D and every now and then, and I see patients who have been taking vitamin D supplements who end up with high calcium levels and quite unwell because of this. There are some centres that will measure the active vitamin D level but not all and it’s not routinely measured. So I always caution against taking vitamin D unless you’ve either had the active vitamin D level measured, or your GP can measure calcium levels every 12 weeks or so and they may be reluctant to do that in the current climate because that’s quite a lot of resource, that’s 4 blood tests a year for somebody to take vitamin D supplements. So I think it’s a tricky one, you have to be quite careful. It may be reasonable to think about other ways of supplementing your vitamin D. It is quite difficult to get it through diet but oily fish and eggs are a good source.

 

Charlene: Yes of course and we have actually got some more information around vitamin D and calcium on our website as well. As you said it’s tricky isn’t it to get that balance and you wouldn’t want to do anything that’s going to offset your vitamin D levels so perhaps best to act on the side of caution at the moment and then possible a discussion to have with a medical professional when we have availability to be able to do so again. Just around exercise with shielding, unlike before shielders are now allowed to go out to exercise, obviously as we’ve spoken about this could really have a great correlation exercise and mental health, it can really help things. From your professional, medical point of view would you say it’s worth the risk as such, going outside, would you say that outweighs the potential risk that you might have when exercising outdoors and being in contact with others?

 

Robina: Yes I would. You’ll recall during the summer we had very busy streets and outdoors we didn’t see huge levels of covid. That may be something to do with warmer weather but it does seem that being outside is a good thing. I think if you’re outside and you find yourself in a crowded space, whether it’s a park and suddenly everybody’s decided to flock to the park at the same time because the sun is shining, have a mask. You can always wear a mask and you can exercise wearing a mask, that’s not going to stop you or injure or harm you in any way. So if you feel more comfortable, if you feel you can’t keep 2 meters from people or you’re worried that people may not respect your distance, then definitely wear a mask. But I do think the benefits of getting out outweigh the risk providing you can observe that. There’s the mental health effects which you’ve discussed, so getting out, particularly at lunch time when the sun is out, if you can getting some light because it will help you sleep later on and just getting out into nature if you can is really good for your mental health but also physically it’s really good because there’s a real risk if people stay indoors for long periods of time that they’ll get more deconditioned, they’ll lose muscle, they’ll lose fitness and then they’ll find that hard to regain later on. So even if it’s just some brisk walks I’d definitely say, yes do that. There’s a caution of course for people who are suffering from severe fatigue. In that case you really need to pace yourself and not decide to go off for a 15 mile hike one day because you’ll probably pay for it hugely for the next 3 days. So it may be worth getting an exercise meter or a fitbit or something and using that just to pace yourself so you know roughly how much you do everyday and you can build it up if you feel able to.

 

Charlene: Of course I think as you said it is really important to keep active and fit and healthy during this time as best as one is able to, depending on your own individual circumstances and what you feel up to but it is definitely a good idea if at all possible to get out and get some fresh air because both the health benefits and the mental health benefits can really be great. Thank you so much for answering those. We also had a couple of questions more around the virus and how many patients with sarcoidosis, I’m not sure if this is figures that you’ve been exposed to, but we just want to get an indication of how many people with sarcoidosis are actually catching the virus. You mentioned early you don’t believe that people who have sarcoidosis are more susceptible as such, it might just be that the impacts if they were to catch it are more severe. Is it still the case that we don’t quite know yet how many people with sarcoidosis are catching it?

 

Robina: Yes I think that’s right. I mean there is a signal that people with Interstitial or Diffuse Lung Disease are more at risk or an adverse outcome with covid but that seems to be particularly true for patients with Idiopathic Pulmonary Fibrosis or IPF and the numbers with sarcoid are still too small really to draw any conclusions. I’ve certainly got anecdotal evidence from my own clinic. I’ve had one or two people with sarcoid who have caught covid and recovered and who are doing very well so that’s encouraging but of course they’re small numbers.

 

Charlene: If in the unfortunate instance that someone with sarcoidosis was to catch covid and they are currently sheidling, what steps do you suggest they take in order to get a test and what steps do you suggest they go through in that position?

 

Robina: Well obviously they can go on to www.gov.uk That’s the recommended way to get a test and that’s probably the best way. The other thing you could do, is you could download the covid-19 symptom tracker app which is powered by Zoe and King’s College by Tim Spectre, some of you may have seen him on your TV screens and they’re doing a population wide study of covid symptoms. They’ve got over 4 million people signed up. You log your health once a day and that also gives you an opportunity to get tested if you need it although if you have symptoms I believe they also direct you to www.gov.uk so it’s probably fairly similar at the end of the day.

 

Charlene: Ok, regardless of whether one is shielding or not?

 

Robina: Yes

 

Charlene: Well thank you so much for answering these questions today. It’s been greatly appreciated by everyone watching. Karis on Facebook has sent a lovely comment saying “some great questions and the answers have been really helpful – always enjoy these Q&A sessions”. So thank you so much Robina for joining us today Robina and answering the questions. I’m sure that we will do more in the future, and of course if there are more covid updates in the future we will be responding to them as they come in and trying to deal with any future questions that you might have as well. So thank you so much for today. I’ll just once again highlight as I did at the beginning of the video if people hadn’t had the chance to join yet. We are extremely grateful for any donations that we receive at the moment. It’s been very difficult for the whole charity sector during covid and we’re in the same boat of not being able to do events so if you are able to donate at all, the link to do so is in the comments section. We’d be extremely grateful and it will allow us to continue doing videos like these so that would be really appreciated if you’re able to donate any amount to SarcoidosisUK. But I think that just leaves me to say thank you so much for joining. As I said it’s so thoroughly appreciated, we’re extremely grateful and it’s been really insightful and I hope everyone watching has now got a clearer picture about the current shielding guidelines, what to expect over the coming month and just got some useful tips about how to deal with shielding at the moment so thank you so much Robina.

 

Robina: Thank you Charlene, it was a great pleasure.

 

Charlene: Thanks everyone for watching. See you next time. We’ll be promoting future Q&As on our Facebook page so be sure to join in and thank you so much for watching. Goodbye.

Related content from SarcoidosisUK:

Sarcoidosis and Fatigue

Do you experience fatigue? Find symptoms, treatment and more information about sarcoidosis and fatigue.

Consultant Directory

Do you want to find a consultant? Use our directory to find a sarcoidosis specialist or clinic near you.

SarcoidosisUK Support

How can we support you? Find more information on our Nurse Helpline, Support Groups and Online Support.

Share This