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CORONAVIRUS – VIDEO ELEVEN

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 9th March 2021 and answers some questions put to us by sarcoidosis patients about the COVID-19 vaccines.

 

Government Advice

You can find the latest UK Government information here.

Transcript 

Henry: Hi it’s Henry Shelford here, Chairperson of the Trustees of SarcoidosisUK and here we’re doing another vaccine video and we’re doing it with Dr Robina Coker who, as I’m sure many of you know, we’ve done a lot of videos with her and she’s just a fantastic and a fantastic human being. Welcome Robina.

Robina: Thank you very much Henry it’s very good to see you.

Henry: It’s wonderful to see you. Now I’ve skipped the normal intro because I think you and I were talking and realised that this has been over a year now since our first one. Our first was on February the 14th when we were just starting to talk about COVID and if you think about that date it was well ahead of really most organisations realising that we were about to hit something very serious and Robina had identified it and very kindly got involved to sort of communicate and tell people about COVID and has done it again and again and again. There are some years where you go “gosh that whisked by”. Not this one, not this one. This one we’ve all felt.  Anyway so I thought what would be quite fun is we’re going to skip back to the past and rather than do the intro and tell you all the amazing things about Robina, I’m going to let the Robina and me of old tell you about all the great things about Robina. We’re going to play you a clip from February the 14th 2020, our first video.

[clip from Feb 2020]

Henry: I’m thrilled – thank you so much for doing this. I think it’s really important. 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 COVID-19. 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.

Henry: I remember that day and it does seem a long time ago. Peter on Facebook has just said that it seems like it was a decade ago. This has been a long year, I mean it ends up saying that in the UK the NHS has tested 2521 people and there have been nine nine cases. What do you remember about about that moment and how you felt compared to how it’s turned out?

Robina: I was fairly anxious about it right from the start I have to say because it became very clear, very quickly that with the level of international travel that we now have, this was going to spread very quickly and I think we were very fortunate with SARS and MERS that we didn’t really experience anything significant in the west but I was concerned that I thought this had the potential to spread very rapidly and I was concerned that even when we were doing community testing early on we were probably not picking up anything like the number of active cases so I was concerned. I don’t think we could have foreseen what happened. I remember someone in the cabinet saying that if we had only twenty thousand deaths that would be a good outcome and that sounded an awful lot but clearly we were being prepared for more but I don’t think we could ever have seen or anticipated that we would have 120,000 deaths and it’s just a terrible figure and as you say it’s just been a very long year. There’s so much happening it sometimes feels as though time stands still and every few days the situation changes, the advice changes, guidance changes and what was true a week ago or two weeks ago is no longer the case. That makes it quite difficult. It’s quite tiring as well because you’re continually adjusting to new news and so I think it’s been it’s been a momentous year. It’s obviously been a defining year and one that will go down in history as very significant.

Henry: Without question, it’s been something else. I think we can all agree with that and I think it’s a testament to you and thank you for getting involved but you did identify this issue and the potentiality of it very early on and it allowed us to talk to people at SarcoidosisUK and with sarcoidosis to know as much as they possibly could as it all unfolded and I think that’s been incredibly important. We’ve certainly seen it, anyway thank you and now back to the work. Enough reminiscing of the old times when we could stand close together without a mask! I can’t quite remember if I’ve seen you since then, if there was maybe one more or not, but certainly haven’t seen you for a year. We’ve had a lot of questions sent in and as we were talking about, this is an incredibly important moment. We’re at the vaccine moment. We’re so hopeful this is the end. I think that we’re all almost you know starting to reminisce about what that was like. I think reminisce is possibly the wrong word, I need to expand my vocabulary. We’ve had a lot of questions in and this is a critical moment because almost everyone with sarcoidosis will have been offered a vaccine at this point, and the people watching there’s a good chance they’ve maybe not taken it yet and so this is particularly aimed at those people so on to the questions. We’ve split them up into four groups so we’ve got vaccines general, vaccines and medication, vaccine efficacy, vaccine and side effects, this video is about vaccines if you’ve not worked that out yet, it is. Nadia sent in a couple, “If we manage to get both doses how long can we expect immunity to last or do we expect it to be annual like the flu jab or more or less often than that?”

Robina: Thank you Nadia, it’s a very good question and I don’t think we know the  full answer to that at the moment. So one of the reasons that we have booster flu vaccinations every year is that the influenza virus mutates very rapidly and it mutates to escape the vaccine, so every year the vaccine is modified to be more effective against the new strains of the flu virus and obviously as you’ve seen in the news, there are variants of interest and variants of concerns they’re called, so these are new mutations of the coronavirus. It seems very unlikely that the current vaccines will not be effective against those variants because the virus would have to mutate very considerably to escape the vaccine completely. However it may be that some of the vaccines are not as effective against the new mutations as they were against the original coronavirus and that’s why the idea has been put forward that we may need a booster in the autumn and we may need an annual vaccine but we just don’t know at the moment  exactly how long the immunity will last.

Henry: Thank you, I think that’s important about the variance and how with flu we’re getting a lot more. There’s a new one every year and maybe that’s what we’re looking at and in terms of how likely it is I think, Robina can correct me if i’m wrong (she totally will, I would be slammed down) it’s unlikely to be more than once a year and that’s partly because of the cycle of the virus so we know that it’s going to spike into winter in the same way flu does so we’d expect to see a vaccine being pushed out annually in autumn if it was going to be on a on that kind of schedule and so for that kind of reason it’s less likely for us to expect it to be more than once a year but certainly I think most money is on initially starting with once a year, isn’t it? and if you want to look in your crystal ball, you could also just look at the vaccines that have been purchased by the government which run us till 2022 with good amounts which suggests that that’s really the line of thinking that they’re on at the moment but with new data as Robina was talking about with new data things change. We don’t know exactly but that’s I think where we’re most likely I’m looking at. Nadia got in fast and she actually put in two questions, so her second was “how many people with sarcoid have had the vaccine so far?”

Robina: Well I don’t think we know that Nadia, I mean I certainly don’t have access to those data and I’ve not seen anything published. The primary care teams will know but of course sarcoidosis is an orphan disease so one general practitioner or one group of practices will not have very many people in their practice with sarcoidosis so I think we just have to wait and see on that the answer.

Henry: We don’t know the exact percentage. I think the thing we do know is  that quite a lot of people with sarcoidosis have had the jab and we know that for absolute certain and hopefully a lot of people caught the live stream with the Royal Brompton just recently, and they’ve been very active talking to their cohort about their vaccines and I know a very large number of their patients we know anecdotally from a lot of correspondence with us that there are a lot of people who’ve had it. We’re doing currently a wider COVID survey, within it we’re asking people about the vaccine and I can tell you there’s a lot of people who have successfully been vaccinated. So although we don’t know that exact data point, Robina is a fantastic research focused person so if you ask a technical question, you will get a technical answer and it’ll be solid but although we don’t know that percentage, we do know a lot of people have taken it successfully. I that might go to the crux of Nadia’s question.

Robina: No you’re right Henry and I’ve certainly got a number of my patients who’ve had it.

Henry: And yeah and they haven’t all just fallen over dead, right?

Robina: No, they’re all fine. They sounded surprised when I asked them and said “yes of course I had that weeks ago!”

Henry: Perfect, exactly. Rachel: “I had my first jab in January” I’m jealous of you, Rachel, “I’m due to have my second jab in April, shielding will have ended by then, is there an advised waiting time for returning to work after you’ve had your second jab?”

Robina: That’s an interesting question isn’t it Rachel? So I’ve not seen anything and we may get further advice nearer the time but reading the data, it looks as though you will have very good protection after your second dose and that will kick in almost immediately so I would at the moment on the data that we have, not see any reason why you shouldn’t go back to work immediately after your second dose providing you feel well and you don’t have any side effects. I mean the main side effects, we can come on to these later, are a little bit of a sore arm and a few people you know feel a little bit fluey so they may have a fever they, may have some chills, they may feel a bit achy and this is because the vaccination is really like a training program for your immune system and it’s trying to trick your body into thinking that you have the infection without you actually contracting the infection at all so you may get a few symptoms afterwards, so depending on that and depending on your job you might want to delay it a few days but in general, just as when you have the flu vaccine there shouldn’t be any reason why you shouldn’t go back to work straight afterwards

Henry: Thank you, actually you talked about the side effects and those general questions, what would you say to people who are in the vaccine hesitancy group who have been offered one but not yet done it.

Robina: Well you know I understand if you’re not someone who normally has the annual flu vaccine, there’s been a lot of hype about these vaccines. I can understand people feeling slightly apprehensive and cautious, but really there is absolutely nothing to be worried about. The common side effect which seems to be true whether you have the Pfizer or the Oxford vaccine is a slightly more sore injection site in your arm than we see with the flu vaccine. That seems to be fairly consistent so you may at the most for a couple of days, notice a little bit of tenderness and achiness around that injection site. That wears off very quickly, but that’s quite common and it’s much less common to develop the other symptoms I talked about, so feeling a bit feverish, having some chills, some muscle aches. Those things are much less common, again they’re short-lived and they really resolve usually within 12-24 hours so I don’t think there should be anything to worry about actually and the risks of getting coronavirus are so much greater. It’s been shown to be incredibly safe now we’ve now got live data on tens and hundreds of thousands of people worldwide who’ve had this vaccine and very rare allergic responses and no serious side effects so I think we can be confident these vaccines are safe and they’re effective and well tolerated so I’d say be brave and go for it

Henry: Absolutely and I think that that’s the critical point you’ve hit on is you’ve got some choices. The choices are that you potentially go out in the wild and get the disease in the wild untamed, aggressive and potentially fatal or you can have it as a vaccine and the vast majority of people are going to get a slightly achy arm, so even if you do perceive, and I think the data as Robina has said very clearly, is that it is safe, even if you do have some concern about it, that has to be wildly different to getting it in the wild. So either way the vaccine’s the way forward.

Robina: Yes a non-medical friend of mine said to me well it’s an absolute no-brainer, you know the risks of a vaccine are infinitesimally small compared with the risks of getting the actual infection

Henry: And in terms of interacting with a bug, this is what we do all the time, our bodies get hit by a pathogen, by a bacteria or a virus, they react, they create a antibody. I worry I’ve got that wrong, I’m not sure. Virus definitely and that’s what your body does and that’s what it’s doing with the vaccine and in terms  of”are we doing something crazily abnormal to our body?” we just aren’t. This is what our body does frequently and in terms of people with sarcoidosis, our bodies are doing it and so it’s not different from our day to day.

Robina: I think it’s worth remembering as well, there’s been so much hype about this because we’ve all been living through these extraordinary times with extraordinary connectedness in terms of news and fake news and so on, so we’ve all become experts if you like on this. We’re suddenly very aware of topics that we probably didn’t pay much attention to in the past, but if you think about it historically, polio and smallpox absolutely ravaged societies before vaccination and vaccination was absolutely key to pretty much eradicating them and preventing millions of infections worldwide and making the countries free of those infections which were really deadly, so we we’ve got a lot of collective history and track record on vaccinations. Vaccinations are not new and they really do work and they are a lifeline in terms of preventing the sort of devastation that these viruses can cause.

Henry: Thank you, you mentioned the pox so I was looking up quickly because I wanted to make sure I got it right. The invention of the pox vaccine, they used to take, a related disease the cow pox and just rub it on you and so these were the sores off a cow would then get rubbed on you and it was close enough that your body learnt how to protect you from small pox and so that’s the start. Historically we would take the sores of an animal rub it on your skin, things have improved people and these are much better options. Rachel whose question we just answered said “thank you for answering, I indeed had a sore, dead arm and felt extremely tired for a couple of days afterwards. I had the Pfizer jab and I will be returning to work all well after a week after my second jab.” She said she’s having her second dose of Pfizer next week and she’s been told to expect symptoms but she had none with the first other than a slightly achy arm. Stewart had his first Oxford vaccine and he’s waiting for a second in April. All of these people watching I’m assuming have sarcoidosis so if you’re in the hesitancy branch I imagine you could actually message them and ask them how it went as well as hearing from us so we are a community trying to help. Caroline on Facebook has messaged to say “I’m concerned about side effects. I’ve heard of several sarcoid patients having long term months of symptoms which are very much like a sarc flare-up. It makes me feel very cautious.”

Robina: That’s interesting isn’t it? So months of symptoms, I wondered when they were offered the vaccine because really not many people were being offered it before early January, so that’s eight weeks ago. I assume those people, if they do think they have a flare of their sarcoid symptoms need to consult their own sarcoid specialist or their general practitioner about that. Of course the other problem is that sarcoid symptoms can be so non-specific, it can be very difficult to determine what is a flare and what isn’t, so I think in the very few people whom that’s true, it’s really important to talk to your GP and talk to your sarcoidosis specialist so they can do some tests to find out what’s actually happening. What I’m certainly seeing is people with sarcoid who have had COVID and now have really prolonged symptoms and the likelihood is that these are symptoms of long COVID and because they’re quite tricky to disentangle from flares of sarcoidosis and in order to do that you do need to have a chat with your sarcoidosis specialist and think about some tests which will help to distinguish the two.

Henry: As you’re on long COVID I’m definitely in the camp of where I think because I think I had coronavirus very early on and then I was ill for some time and ill enough that I had an MRI, I had a heart investigation and a number of other things, I was really struggling and that goes to Nicky’s point on Facebook. She said “I had the AstraZeneca vaccine around three weeks ago  and I believe I had quite a reaction to it. Terrible migraine, my arm swelled, I had pain in my neck and shoulder. It made me realise how poorly I could potentially be with coronavirus. Not looking forward to the second dose but rather have a reaction than the real thing.” I mean Nicky nails it there like and I think that idea that if you have a reaction, maybe that’s because you would have had a really bad run is really an important way to think actually. I like you Nicky, you’re great. So our last general question, and we’ve had I think something similar from Jennifer on Facebook, “is the NHS currently measuring some immunocompromised and immunosuppressed people’s antibodies for all three vaccines so we can be assured that chances are that we are producing enough antibodies? How do we go about getting an antibody test for ourselves?”

Robina: So they’re very good questions, the first thing is in terms of getting an antibody test. I don’t think that is straightforward. My understanding is that in most regions or in many regions you can’t get an antibody test for COVID. Now in the hospitals you can do an antibody test for COVID, we tend to do them if we think somebody is likely to have had COVID fairly recently but we can’t pick it up on the PCR swab test so it can be useful particularly in in-patients if they’re repeatedly testing negative for COVID on the swabs but actually we think they do have COVID. It can be useful to see whether actually they’ve got evidence of prior infection and I have done it in a few people who’ve come to me and said “I really think I had COVID but I don’t know” and when I’ve been doing blood tests for other things I have done a COVID antibody test, so you know it is available in certain circumstances. Now that COVID antibody test will measure your natural immunity to COVID because that’s what we’re looking for when we’re asking that question, “have you had COVID?”  There’s going to be a different antibody test coming on stream and my understanding is that different sectors and different hospitals are doing different antibody tests so the new antibody test will actually look at your immune response to the spike protein and it will reflect your antibody response to the vaccine. It’s not the same so there are two different tests, there’s one that tests your natural immunity to COVID and there’s one that tests your induced immunity in response to the vaccine and looks specifically at immunity to the spike protein so, that’s the first thing to say on that. So I don’t think it’s going to be straightforward just to go and get an antibody test. The better news is that last week there was information about a study called Octave and that is being run to look specifically at the question of antibody response and immunity to vaccination for COVID in groups of people who are immunosuppressed because of course there are a lot of people around with autoimmune conditions so it’s not just sarcoid but people with rheumatoid arthritis, lupus, multiple sclerosis, inflammatory bowel disease like Crohn’s disease, some people with rare genetic conditions, chronic kidney disease, liver disease, those with cancer, people who’ve received either solid organ or bone marrow transplants. So there are quite big cohorts of populations around the country who are also many of them either taking immunosuppressant medication as in steroids, methotrexate, mycophenolate and so on or who have reduced immunity and the Octave study is being run in a number of centres and it will be looking at immune response in those groups. So I think that is a very positive development and will help us work out what immunity people with autoimmune conditions and people who are on immunosuppressant medication do have. At the moment I think it’s going to be difficult as an individual to go and get an antibody test for the reasons I’ve outlined.

Henry: Can sarcoidosis people volunteer themselves to the Octave study?

Robina: Well that’s a good question I’ve actually just when I read about it I’ve emailed our principal investigator at Imperial to ask that very question. I will let you know when I find out. I suspect it hasn’t been designed with sarcoidosis patients in mind but I think you know it would be a good group to study if the protocol can be adapted.

Henry: Okay so the either there’s a potential for Octave to include sarcoidosis and if not it might act as the precursor for then a study for a sarcoidosis cohort.

Robina: It would give us a lot of information which I think one could extrapolate to sarcoidosis because they’re similar conditions and people are often taking immunosuppressive medication.

Henry: Yeah I think that’s a very important point but you can hear, everyone watching with sarcoidosis, Robina has very clearly got your back and she is working very hard constantly so thank you Robina. She didn’t know that question was coming. I think actually that’s really good thank you very much. Right back to our questions, so we’re now into vaccines and medication and Sarah by email said “Can I take methotrexate injection today on the same day as the vaccine, the day after the vaccine or should I wait a few days? The SarcoidosisUK website, the rheumatology department and my hospital FAQ say continue as normal but the vaccine centre staff told me to delay it a few days.”

Robina: So the standard advice is to continue as usual. I think you know that’s a very specific question and as you will know everybody reacts slightly differently to methotrexate in particular, so some people sail through their methotrexate once a week and some people tell me they feel really rough for 48 hours after taking methotrexate and everybody is different. So I think in that situation I would certainly take the advice of the vaccination centre very carefully and very seriously because they’ve actually looked at you as an individual and assessed your risks and your benefits as an individual rather than just the generic advice that’s out there and I think if you if you’re still concerned then you should either talk to your GP or preferably your specialist because somebody should be prescribing your methotrexate from a specialist centre and should be able to give you advice and again it will depend a little bit on your on your reaction I suspect to methotrexate, your experience with that medication.

Henry: Thank you Michael asks “if the immune system is suppressed by steroids how will it wake up and recognise the vaccine?”

Robina: This goes back to the question about how effective are the vaccines in those who are immunosuppressed and that’s why the Octave study is being run to look at exactly that question. Now we do know there was a paper published earlier this year that looked at the immune response in immunosuppressant patients to the flu vaccine in 2018 and showed that the immune response was significantly reduced in people who are on steroids or immunosuppressed with other agents so it is likely that if you’re immunosuppressed, you’re taking steroids, your immune response to a vaccine will be less than you if you weren’t taking it. However both the vaccines that are being used at the moment in this country, so the Pfizer and the Oxford vaccines are really very effective and I don’t know whether any of you watched the December video that we did with Anna Blakney, who’s a scientist who was working at Imperial College London but has now gone off to set up her own lab in Canada, and she told us that when Pfizer originally designed their clinical trials and their vaccine development program in February 2020 their target (this is an American company so you know they were going for stretched ambitious targets) was 70 percent efficacy. When they got 95 percent they could barely believe it was so effective and you know the Pfizer vaccine and the Oxford vaccine are way more effective actually than most people ever dared hope for. The average efficacy for the seasonal influenza vaccination is 50 percent. That gives you an idea what we’re working with normally. So given that we’ve got very effective vaccines, if you’re on immunosuppressive medication, yes they may be less effective than they would be but they’re still going to give you a measure of protection and it’s for exactly that reason that we still recommend that people who are on immunosuppressive medication have the seasonal flu vaccine every year. We know they may not get such a good response but it’s awful lot better to have some protection than to have absolutely none.

Henry: That goes to our earlier point that we talked about, if you have that lower level of immune response and you meet the disease in the wild, you’ve got a double bad going on. You have less immune base and less of a response so the disease then has much longer to replicate and in doing so, much more likely to cause you harm and so  yeah ideally everyone would get a really high base but in this world that’s not true, so better to have some.

Robina: No and the consolation to those of you who’ve had it and have had some side effects is that you you’ve probably got good immunity as a result because the general consensus is that if you if you get side effects it’s a sign that your immune response and reaction is kicking in nicely to give you good protection in the future so that should be an encouragement.

Henry: Very good and also I did want to answer to Michael’s comments about that it needs to wake up your immune system. Do you want to respond to that?

Robina: Well it will wake up because it’s going to be encountering something it’s not met before and just as I say, you know when you have the seasonal flu vaccine your immune system will recognise it, it’s just it’s going to be dampened. If you play the piano normally and you use the use the dampening pedal to reduce the volume, it’s a bit like it’s going to dampen the effect but it’s not going to stop it completely.

Henry: That was such a cultured answer and it’s just very nice. I’m going to go with the slightly less cultured one, Michael your immune system is not asleep it might be sleepy but it’s not asleep, all right it’s still there and a vaccine is like a quadruple shot of coffee, if someone’s used to a lot of coffee then it’s not going to wake them up as much but you know 95 percent of people get woken up from being slightly sleepy. Right you’re a cultured person Robina with your piano analogy.

Robina: No that’s one example I suppose you could just talk about muting the Zoom volume.

Henry: There you go. Eileen asks, “Is there any information that halting our immunosuppressants for several weeks either side will enable a better individual immune response to the vaccine?”

Robina: There’s no evidence for that and I would caution against it for the same reason that I cautioned against stopping medication last year when we were having these initial sessions and the reason is that if you’re on immunosuppression and if somebody has made that decision with you that your condition would be better if you were taking immunosuppression, you really risk a flare of your sarcoidosis if you then stop that immunosuppression and you do not want to either encounter the virus or the vaccine if you can help it with an uncontrolled flair of your sarcoidosis. So I think you want to meet those experiences with well-controlled, well-managed disease so I would not suggest that you stop your medication. If you think that actually your specialist was talking about winding down your medication anyway, then you may want to have a conversation with your specialist because you may have missed an appointment or two, they may have been rescheduled and you may want to bring that forward and have that discussion but my firm view is that you you’re going to be in a better position whatever happens if your sarcoidosis is well managed, well controlled and you’re on the optimum amount of treatment. I wouldn’t suggest or recommend stopping it.

Henry: Thank you and that was such a good point about not wanting a flare-up, yeah that’s a horrible potential. Nadia has asked a question, “are there any contraindications with our immunosuppressants, blood pressure, steroid and other medication. If so how will they manifest and what should we do?”

Robina: I’m not aware of any contraindications. The main thing that you just need to be aware of is if you have a history of severe allergies such as anaphylaxis, so wheezing, breathlessness, lip swelling immediately after medication or the first shot of the vaccination or anything else, any other substance, you should let the person who’s going to give you the vaccine know about that before you receive it. That’s really the only contraindication. So it’s another history of anaphylaxis, so if you carry an epi pen for instance or if you experienced a severe allergic reaction to the first dose, that would be hopefully on your records and they would know about it. It’s still worth mentioning though.

Henry: Thank you. I think certainly worth mentioning when you get to the vaccine centre because that makes me makes sure that they know about that and they may just ask you to wait for a while afterwards to check that everything’s fine, as they expect it to be. Barry just also chimed in to say “I’ve had my first Pfizer jab in January. My second this Saturday, my only reaction was a sore arm with the first.” Vaccine choice, “Sorry if this has already been asked, my GP has given me a choice of vaccine.” Nicky on Facebook, you are a lucky lucky person and actually we haven’t asked Robina. Robina have you had your vaccine?

Robina: I have. I’ve had both doses. I’m very fortunate I had my first days at 9.30 in the evening on the first day that our Trust allowed us to have them. We were all invited, I was so keen. It was very cold, it was just before Christmas and I went to 9.30 at night to get it because I was so keen to have it and then I had my second one a couple of weeks ago so I’m feeling very fortunate but I certainly wasn’t given a choice and I don’t know anybody who was given a choice.

Henry: Neither do I! Nicky, you are lucky! “Is there any evidence to show which is better for those of us with systemic sarcoidosis please?”

Robina: I’m not aware of any data showing that either is better and I think you know they’re both really good vaccines. They’re both effective. The Pfizer data suggests it’s possibly slightly more effective than the Oxford vaccine but you know the differences are small and they may even out in the future and we’re getting more data the whole time. It may change as I said before things are changing every week so i wouldn’t like to be quoted on that in the future.

Henry: Please take either, flip a coin. We’re all jealous Nicky.

Robina: So we have a whole section of questions on vaccine efficacy and Ali’s question was about, “will having autoimmune condition reduce the efficacy?” and I think we’ve answered that. They did ask just to understand why that is. It’d be nice just to hear if you could tell people why it’s slightly lower response. Why do you have a slightly lower response if you’re taking immunosuppression medication? Probably just because generally steroids have lots of different actions and most of the drugs that we use have different actions. They’re not that specific so they just as I say, they just have this general sort of dampening effect on the immune system and so they will tend to reduce an immune response to foreign protein.

Henry: Melanie asks a question that hits a nail on the on the head and an unpleasant reality “is there still a possibility that the vaccine will not prevent deaths if a person has other underlying conditions but just reduce the chances?”

Robina: So all the data show as I understand it, that’s from up to last week that both vaccines, the Pfizer vaccine and the Oxford vaccine are around 80 percent effective in preventing serious disease and preventing hospital admissions, which is really exceptionally good for a vaccine so that means that you are very much less likely to get severe disease. You’re very much less likely to get admitted to hospital or to need oxygen. You’re much more likely if you do catch it to get a mild infection. Now nothing is a hundred percent, it never is. They can’t say that it will prevent all deaths but it’s clearly going to reduce them very very significantly with that level of efficacy.

Henry: I think this goes to the point and actually what the government’s trying really hard to do and the 48 percent of old people who’ve already broken the rules, you are part of this camp who go “right like we can do whatever we want” when there’s a large group of people who like me haven’t had the vaccine who therefore represent a reservoir of people who the disease can burn through. So if we as a population don’t follow the rules then we we have a problem and it will burn through and then for those people for whom the lottery did not work and they do not have the protection, then they have a chance of dying and and we need to make sure that doesn’t happen by reducing the ability for the disease to flow through our population by us all having vaccinations. The reason we wear a mask is to stop us giving it to other people, one of the reasons we have a vaccine is to stop us giving it to other people and so this point is very important from Melanie that, no this this isn’t a magic pill.

Robina: No you’re absolutely right Henry, I mean having a vaccination is always both about protecting yourself but also protecting those around you. It’s a really important part of the equation.

Henry: Eileen, who’s asked a lot of good questions, has asked about the antibody test. I think you’ve talked very elegantly about that. She has asked if there’s going to be potential for a third jab. I think the answer is there are tests ongoing, there are wider population antibody studies going on and these questions are being thought about.

Robina: Absolutely I suspect there may well be an annual seasonal vaccination.

Henry: We’ve had  another question on the difference in the reactions and effectiveness. Katie’s asked, this is our last vaccine efficacy question, “what is the difference in efficacy in taking the two doses within the the different recommended time frame, eg. 21 days and then three months?”

Robina: Of course because we were one of the first , if not the first country to propose a delay in the second dose and many of us were somewhat dismayed initially at this, but it does look as though it’s a gamble that’s paid off and actually with the Oxford vaccine you seem to get better protection if you delay and certainly with the Pfizer vaccine it doesn’t seem to be detrimental. So I think that strategy has paid off. I think it was a bit of a gamble, I was sceptical I think and I talked to a pharmaceutical representative who was horrified because of course the idea that you would deviate from the protocol of a clinical trial is absolute anathema to them. It’s quite difficult for doctors as well because we have to prescribe according to the licensing indications and rules and if we prescribe something off license we have to make that very clear to people and say “look this drug isn’t licensed in this condition but I believe it might help you. Are you happy to accept that prescription” and we have a go, we try it on that basis and there are medications that we do that for, but it’s the exception rather the rule, otherwise the general medical council would have something to say about it. So I think it was always tricky and some of us were rather cautious but it certainly does seem to have paid off and I don’t think there’s any doubt now that it seems to be fine to delay that second days up to 12 weeks.

Henry: Thank you we’ve been asked about side effects and I want to go straight to one from Paula on Facebook who’s watching along and has asked this question and it’s an important one because I think it’s been going around “there are rumours flying around that the vaccine could cause possible infertility problems in young people. Please could you reassure us that this is false?”

Robina: Yeah I mean we talked quite a bit about this actually with Anna Blakney our vaccine expert from Imperial College London in December and there really is no evidence for this at all and she was she was very clear about that and if you look at that there’s just there’s just nothing to to bear that out.

Henry: In terms of the mechanism of how the vaccine is working there isn’t a route for it to do that.

Robina: No and in either of the vaccines the messenger RNA is degraded within 48 hours or so of injection, that’s the Pfizer vaccine and the Oxford vaccine delivers the spike protein part of the protein through a modified harmless common cold virus and those are again dealt with very quickly so there is nothing permanent and there is nothing live. There’s no live virus in the vaccine.

Henry: In terms of vaccinations we have them as children, we have them as adults when we want to go traveling, there are certain countries where you have to have certain vaccinations to go to them and honestly I have been to a lot of those countries and I’ve been a pin cushion for the travel jabs and I have two bouncy children it’s just like we’re hitting antibodies all the time.

Robina: Yes we are and it’s interesting that there is so much controversy around the idea of vaccination passports because actually as you say countries have had requirements for vaccinations for a very long time so if you travel to certain regions of sub-Saharan Africa you need yellow fever vaccination, you need to be up to date with your up to date with your polio, you may need a rabies vaccination and if you’re very old like me you will remember in the early 1970s when there was an outbreak of smallpox and everyone had to get a smallpox vaccination booster before they could travel and this was just accepted, this was part of normal travel requirements so it’s sort of interesting that it’s become such an issue with the COVID infections when you think of the devastation that the infection causes and it’s rather surprising that there is so much concern about requiring that vaccination to travel.

Henry: I’m just expecting as soon as that date comes when people can fly, this country is emptying like all the people with like two jabs will be like whoosh and gone. If i’ve got my jabs i’ll be one of you.

Robina: Absolutely.

Henry: I think that’s a very important question that’s being asked it is one of those that’s going around WhatsApp and and it’s very important to put it to bed so thank you Robina on that. Right vaccines and side effects. This is Michael on email and I think you can see by the way that obviously we’ve been promoting this event for a little while and people are getting in touch whichever way suits them best and everyone’s very grateful to be able to put these questions to you. The fact that all these questions are here is a testament to how pleased people are that they are to be able to get these answers so thank you. “I’ve been diagnosed suffering COPD with sarcoidosis affecting the lungs and fatigue. I’ve recently received the AstraZeneca vaccine and suffered a relapse with the condition and i’m sceptical about receiving the second follow-up vaccine in case I suffer another severe reaction.” What would you say to him?

Robina: Yeah well I’m sorry to hear that. I think the first thing is I’d want to know what the what the relapse represents you know, was it the COPD? Was it the sarcoidosis? What actually was it? Presumably you got some medical advice at the time so you’ve got a little bit more input into that and I think as I said before where there are unusual or particularly tricky individual circumstances, I think you need to talk to your sarcoidosis specialist or your respiratory specialist if you have a respiratory specialist who’s managing both conditions together and get their input into that because obviously we can’t give individual advice in these videos but it’s really important that somebody goes through it and tries to work out what did happen after that first dose or was it was it just bad luck? There are of course people, i’m not suggesting this happened to you, but I have a number of colleagues who’d clearly contracted coronavirus a couple of days before they got their first vaccination so they ended up ill but you know they’d obviously caught COVID just before so you know these things can be can be coincidence or they can be causal but I think you need you need to talk to your specialists about it and get more advice specific to your situation.

Henry: Thank you that’s a very important point. We’re not being able to give individual advice, people are too complicated for that. This is general advice and everyone needs to know that disclaimer. It’s a similar sort of question but a bit wider so Chrissy through our website said “if our if our immune system is over sensitive and we’ve suffered a major flare-up after the flu jab and I’ve been told not to have the flu jab again, can we have the vaccine?”

Robina: Yeah well it’s a very similar question isn’t it? So I think you know, whoever told you not to have the flu vaccine again must have had a reasonable reason for saying that to you and obviously I don’t know the situation but I think again it’s one where you do need to go and talk to your specialist and say “look what would you recommend in this situation?”  Absolutely, because you don’t want to put yourself at risk of getting the infection, you really don’t, but obviously if you’ve been told not to have the flu vaccine that does raise some questions and I think it’s quite reasonable to talk that through with your specialist.

Henry: I think it is one for the specialist and it may be worth talking through that flu decision and understanding a bit more about it but I would go to your specialist on that. So we’ve had we’ve had quite a few people ask a similar question and I know we’ve touched on it briefly earlier. It says “several people in the group have had antibody tests of some sort, three to four weeks after the vaccine but have had no antibodies. Could you explain how likely we can have antibodies? It’s because actually Peter and a few others have asked similar questions and they’ve been asking them just recently so I just want to cover it again.

Robina: Well I think it is as I was saying earlier and obviously I’m not an immunologist but my understanding is that the antibody test that’s been used widely until very recently has been an antibody test looking at natural immunity and I’m actually part of something called the Siren Study which is a study that’s been carried out in NHS healthcare staff and for that we get a swab every fortnight and an antibody test once a month, a blood test once a month and my natural antibody tests have remained steadily negative even though I’ve had two doses of the vaccine and that’s to be expected because that antibody test is measuring natural immunity and natural antibody production. Now at some point there may be a switch to measuring, not artificial immunity exactly, but the immunity that you’ve got in relation to the vaccination and there’ll be a way of distinguishing between those two tests and whoever’s administered those tests will be able to tell you but I don’t think that test is in wide use at the moment and it will need to be made quite clear when it’s introduced that that’s what’s happening because otherwise people who are previously antibody negative will suddenly test antibody positive and that’s not saying that you’ve had the infection, it is saying that you’ve had the vaccination.

Henry: For the dumber one of the two on this Zoom, have I understood it correctly, that the antibodies differ slightly between if you’ve had it versus the vaccine? Do they do they then differ between the different variations, if you’ve got it in the wild, the different variations you might have like been in contact? And then the same question to the different vaccines, so do we do you need a different antibody test for each variation potentially and each vaccine?

Robina: I’m not aware that you do as far as I’m aware at the moment there are only two, one is testing your natural immunity and one testing immunity in response to the vaccine. Those are the only two I’m aware of but I did say I’m not an immunologist.

Henry: And I think we’ve as we go back to something you said at the very start, which is you know we’re continually learning about this disease and the different aspects of it and you know that is potentially one of them. Paul does ask “do you anticipate the shielding advice to be extended beyond march the 31st?” What’s your what’s your money on? because unless you’re his alter ego, you’re not Boris.

Robina: I would hope that it would not be extended. I’m naturally cautious um and I’ve been struck by the plummeting in infections and mortality because of the last few days. They really are coming right down and it seems to be that that is reflecting the effect of the vaccination so it’s not just the lockdown, it’s the vaccination as well which is really encouraging. Now it may go up a little bit, the R number may go up a little bit with the school’s going back, that’s why the government is trying to allow a few weeks between each intervention, to try and measure the effect of one intervention before it releases something else. I think that’s sensible but I would hope that the numbers could be down sufficiently that the shielding does not have to be extended. I haven’t got a crystal ball and I think you know, there are warnings and it would make sense actually, there are warnings that there may be another wave autumn late/summer autumn of this year and that’s going to pick out of course people with no immunity, so it’s going to pick out people who haven’t been vaccinated and I know that there is concern about that and so it is possible I guess in that scenario, that we would see a reintroduction of shielding at that point, but I’d hope that with the coincidence of lower numbers, falling numbers, which are really encouraging at the moment and warmer weather and we know that coronaviruses are not a problem in the hot weather and they’re much less of a problem the warmer weather and most prevalent in the late autumn and winter months, that shielding would not need to be extended.

Henry: I think it’s very important now, the impact of the weather. I have to say that one of the things though that makes me a bit more… I am with you, the numbers changing is just so wonderful and I think you know, each which one is a person and then those coming down means there are a lot of people who would otherwise be on that list not being there, it’s so good but it is still also so awful. That’s why we mustn’t count these chickens, there’s a lot of work to be done, there’s a lot of people who need to continue to play their part. I’ve got a question for you to enjoy, okay? Someone is channelling the Donald, “I’m on methotrexate and hydroxychloroquine. I’ve been reading about hydroxychloroquine and being a good drug to be on. Why are not more people on it?”

Robina: Okay so this would have been this is a good question last year actually. So interestingly hydroxychloroquine kills COVID in vitro, by in vitro I mean in the laboratory, in cell cultures. So it kills it and it’s got antiviral activity, so it was put forward initially as a possible treatment and the trial data showed that it wasn’t effective. It was being used in quite high doses I might add, much higher than we use in sarcoidosis but it was shown not to be effective. It was also shown to have quite high levels of toxicity, that of course was largely because it was being used in very high doses and then there was another study called the COPCOV study which I took part in, a number of people took part in, looking at whether hydroxychloroquine taken in much lower dose as a tablet daily for 12 weeks could help to prevent, not treat COVID, but prevent infection and that result was also negative so there is no data showing hydroxychloroquine prevents COVID. So, sorry to disappoint on that. It is disappointing. We’d hoped it might be a treatment, it isn’t and we hoped it might be an effective prevention treatment and it isn’t so despite everything that Donald Trump said and did, about it we have to take hydroxychloroquine off the list.

Henry: Sorry about that and talking about things he said and did, he also took the vaccine without telling anyone which I thought was pretty interesting. We’re in a different country people. I did want to say something to everyone, listen to Robina. Robina is using studies and part of studies. They are very important and a lot of questions have been about what about “sarcoidosis and x?” and so sign up for studies. I can’t underline that enough. Be like Robina, She is in the Siren study, she’s first in the queue for the vaccine. I think these are important things, join studies and literally you just google NHS, sign up coronavirus studies, it takes you to the NHS page where you can learn everything. So do just sign up, they then qualify you, so if sarcoidosis is a problem for a certain study, you won’t be brought on, so that that stage happens. Signing up doesn’t obligate you and it doesn’t mean you’re on, it just means you’re available and we want sarcoidosis people to be available in those tests so do sign up. I think that’s a big deal and you can hear Robina quoting the studies so this is important stuff. We’ve only got three more questions left  if that’s all right Robina? We have one from a 13 year old, “I’ve had sarcoidosis for a long time”, which I think is very unusual “I’ve had sarcoidosis for a long time. I’m taking immunosuppressant medication. So you think it is safe for me to go to school?”

Robina: Gosh. That’s a very tricky one isn’t it? I’m sorry to hear that because sarcoidosis is very very uncommon in children. I think you’re going to have to have a really good conversation, maybe a video chat with your specialist and talk to them about it, because you really don’t want to miss out on your education, you really don’t want to miss out on your friendships, seeing your friends, all those interactions, really getting the help from your teachers that you need with all those subjects, and it’s really important that you don’t miss out on your education but you will be at more risk, so have a chat with your specialist. I know that vaccination is not being offered to children as a general rule but it might be that your specialist thinks actually there’s a reason to put you forward as a special case. I don’t know, this comes back to not being able to give individual advice. I certainly think it’s worth a conversation. Don’t just say I’m not going to go to school without talking to somebody about that decision because I think it’s so important that you don’t miss out on your education. It’s not just the learning bits, it’s the fun bits that are really important for you and for your future, but yeah absolutely you need a bit of help with this one I think.

Henry: Yeah that’s sometimes a tough one and there are now studies going on at the moment for vaccinating children?

Robina: Yes and there’ll be all sorts of other studies coming on you know. I suspect there will be comparisons of vaccines head to head and all sorts of things that will take place over the next few months.

Henry: Right our last two questions. Jonathan on the website, “it looks like we may end up having a COVID vaccination each year. Those with sarcoidosis seem to often get other autoimmune diseases.” Probably that deserves a response “and the immune system does not work as expected. Is there a risk of repeated exposure to either the virus and or vaccines that could cause problems to those predisposed to autoimmune problems?”

Robina: Yeah I don’t see any evidence for that and I don’t see any reason to think that because that’s not our experience for instance from the annual flu vaccine. So if I’m honest we don’t have the data but I would also say I wouldn’t see any particular reason why that would be the case because the the reaction that the vaccine is stimulating is a very specific one, just to those few bits of the spike protein that’s in COVID-19 and all it’s doing is just training your immune system to deal with that particular infection, that particular foreign invader if you like, I mean we do this we do this every year with the flu vaccine and I’m not aware that that is causing a problem.

Henry: Thank you and back to an earlier point, we’re doing a good job of coming back to those. You’ve got the flu vaccine happening every year, but you’ve also got you getting a cold every year and you getting X, Y and Z and interacting with that and the different kinds of colds and the different things your body’s hitting so your body is hitting immune things all the time. The fact that you’re going for an injection just isn’t so different. It’s part of what your natural body process is. We’re on to our last question from Claudia, “Would you recommend the vaccine for a patient with non-active sarcoidosis?” and I think this is an important question because there’s a big group of people and this group, many of them will not yet have been offered the vaccine, so are starting to think about it or are about to get offered it. “Would you recommend the vaccine for a patient with non-active sarcoidosis in remission for almost 10 years, what are the risks of an abnormal immune reaction to the vaccine and could it potentially reactivate the disease?”

Robina: It’s an interesting question Claudia. So again, I don’t see any evidence that the COVID vaccination is going to cause a reactivation of sarcoidosis. We don’t see it with other vaccines and so I see no reason why a COVID vaccine would do it. The JCVI as you know has prioritised vaccination for people largely in terms of age, so obviously serious conditions and clinically extremely vulnerable people have basically been prioritised to join the older age groups, but after that it’s been done by age and so people with inactive quiescent recovered sarcoidosis who are younger will only be being approached in the next few weeks and months. Yeah absolutely I’d recommend it, because if you don’t have it, you will have no protection whatsoever and if we get a third wave in the autumn and you want to travel overseas, you’re going to be totally vulnerable to this infection and even if don’t get quite as much efficacy, immune reaction as you’d like, you’re going to get some protection so from that point of view absolutely and you know we have no evidence that it will cause a reactivation of sarcoidosis and it has been given to a lot of people now. We know it’s not only effective but safe so I would encourage you to have it.

Henry: And it goes back to that point, you either risk getting it in the wild which will almost certainly have a much more dramatic effect versus having it in a controlled way in a vaccine. It may not be a choice that you any of us wish we were in, but it is the choice we’ve got and then when you look at it that way I think the answer is very obvious and you want to go at 9.30pm and get your slot like Robina did. That is all our questions. I’m going to thank Robina in a second but before I’m going do that, I’m going to tell you when you’re going to see Robina next because she’s fantastic. So we have, and actually I think this is our first time announcing this so we are excited to announce the SarcoidosisUK and the Royal Brompton Hospital Sarcoidosis Patient Day. It’s on the first of April from 10 to 4 and it’s a free virtual event created specifically for sarcoidosis patients and you’ll hear patient-centred talks from amazing, knowledgeable, extraordinary professionals such as Robina. Robina is clearly one of the stars of the of the day and she’s going to be talking on COVID-19 and sarcoidosis, risk and change management and monitoring. So for anything that you still want to be covered, that’s going to be the the moment but it is much more of a presentation. If you want to know about signing up, you need to join the newsletter and just go to the SarcoidosisUK website and sign up for the newsletter there to see Robina again but it is going to be much more structured so it’ll be her speaking on it and then I believe we’ll be taking some questions that would have been emailed in earlier to sort of help her answer anything that’s come up and help guide that conversation. Robina it is an absolute pleasure as ever and I have learned an enormous amount. You’ve heard all the questions coming in, you know that a lot of people have been watching and listening. I know it’s a lot of time out of your day and I know it’s your day off so we’re really very grateful for it but it’s hugely meaningful, as you know these get seen by thousands of people and are very very impactful but what you’re doing, all the work you’re doing is it is very important. Thank you very very very much.

Robina: Well thank you Henry as ever for inviting me. It’s been a great pleasure and thank you to everyone who’s sent in questions because they’re all very good and thoughtful questions and they’re important and I hope it’s been helpful.

Henry: Thank you and the fact that people are asking those questions means almost certainly lots of people want that same answer so sending them in is important. There’s a lot of quiet people who actually will have wanted to send that in but didn’t quite so they’re always important. Thank you Robina, it’s been amazing, thank you very very much indeed and I wish you a great rest of your day off. It’s been absolutely wonderful. Thank you everyone for watching. It’s time for us to sign out now, thank you very very much indeed and goodbye everyone and thank you again.

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