Q&A with Dr Arvind Kaul – 11 March 2021

Charlene: Good afternoon everyone, thank you so much for joining another one of our live Q&A sessions. Today I’m absolutely delighted to be joined by Dr Arvind Kaul and he’s going to be answering some of your questions that you’ve been sending in around APS and general questions, we’re then going to move on to some COVID related questions and also vaccine questions. We’ll be trying to address all of those as best we can and answer all the questions that have been sent in, if you have got a question that you would like answered that you didn’t previously send in to us then you can still comment it in the video below and we’ll be trying to get through as many of those as possible, so do comment them in the video and and as I said get through as many as we can. Before we start the video I would just like to say that of course all of this is only possible through your generous donations, the work of GHIC is absolutely vital and everyone has really felt the pressure in the last year or so due to COVID, so any donations that you can make would be extremely appreciated and the link to do so will be posted in the video, any amount whether it be large or small would just help us to continue our vital work and the amazing work that both Arvind, Graham and the rest of the trustees have already done for GHIC, so if you can spare anything that would be greatly appreciated. So without further ado I’d like to say hello to Arvind,  thank you so much for joining us today Arvind!

Arvind: Thank you and thanks for moderating this edition Charlene it’s great to have you with us.

Charlene: Arvind is a consultant rheumatologist and also GHIC  chairperson, so he is going to be answering the questions that we’ve had sent in and we will be cracking on with a few, so without further ado as I said we’re starting with some general APS questions. So we had a question sent in from Michelle who says “I am triple positive with APS and I’ve had two strokes and four TIA’s and I thought I read somewhere that people on warfarin needed to have an INR of four+, is this correct?”

Arvind: The INR guidance is generally if you’ve got arterial strokes then an INR generally at higher levels between three to four might be better for you, it’s quite a contentious area but in general with arterial events I generally recommend higher INR’s and so higher than four is not necessary for many cases and the only times when  you would consider very high INR’s over four would be if you’ve had recurrent events really at lower INR’s or you have other factors such as metallic valves, which may also be important considerations when you’re being anticoagulated. So I think the level of INR will vary but in general arterial strokes or arterial events generally warrant a higher INR than venous events where the iron tends to be lower. 

Charlene: Okay thank you, so for someone say whose INR did need to be adjusted, is it likely that they’d stay need to stay at that higher INR level for a prolonged period of time and does someone’s INR switch quite regularly, how does that side of things work?

Arvind: I mean in general you want to try and keep the INR as stable as possible within the range that’s been provided usually by the hematologist, that’s quite difficult and many patients that we know and treat have quite a lot of difficulty managing the INR’s, it can be quite variable on a day-to-day basis and really the the key to this is stick to the INR that you’ve been provided, generally for arterial events it’s higher than it is for venous events like DBTs and pulmonary emboli and whatever range and whatever type of thrombosis somebody has had, stick to the INR as rigidly as you can. As I say it’s difficult and some people find it really difficult to stick with an INR being sometimes four on one particular day and the next day it can be 1.5 without any obvious change. I would recommend that you take the warfarin exactly the same time every day, that your diet is as stable as possible – that means particularly vitamin k containing products, many of which can be found online so you’ll know what contains vitamin k and what doesn’t, particularly if you’re on warfarin of course those should be looked at and try and keep to stable contents of vitamin k containing foods. The other thing to do is consider monitoring at home, so in other words if you’ve got a home monitoring kit that may provide some reassurance that INR’s are being kept within range. Again it’s not easy but it may be easier to do at home than it is when you’re going to an anti-coagulation clinic once a week, once a month or once every two or three months. So the summary is that you stick to the INR you’ve been given and stabilize your diet as much as possible and utilize the anti-coagulation clinic advice and if you’re going to use home monitoring make sure that’s done with the full cooperation of the anti-coagulation clinic so they can advise you as to what to do.

Charlene: Brilliant thank you for answering Michelle’s question in so much depth, I’m sure that’s going to be a great help to her and we’ve also got some more information about that over on the GHIC  website if you did want to go and have a bit more of a thorough in in-depth read about INR and warfarin interactions and so forth. The next question that we’ve had sent in was from Sanjita and it’s around APS diagnosis, so it seems at the moment that she or a family member is in a position where they’re unsure what this person is suffering from is APS. So Sanjita describes the individual as a 15 year old female, there is a family history of APS and then she’s kind of got some results detailed here as well, so ATTP is currently at 34.4, PT 10.9, a month later lupus anticoagulant was detected, DRVT at 1.23 APPT at 30.2, so far no antibodies have been detected but she is still experiencing fatigue and headaches, palpitations, chest pains and shortness of breath from time to time. Does this sound like it could be APS?

Arvind: So obviously it’s very difficult to comment on individual cases and in general APS is diagnosed when you have recurrent miscarriages or thrombosis and you’ve got to have either of those two in the setting of positive blood tests taken 12 weeks apart, both sets must be positive so it’s quite a strict set of criteria and these are called classification criteria. Now what does that mean, well it means that in clinical studies where you’re doing a trial, for example of a drug or you’re studying patients with definite antiphospholipid syndrome, those are the group of patients you want to have in that study, you don’t want to have people who don’t have APS or who might have APS you want patients who definitely have APS and classification criteria are used for clinical trials to incorporate patients into studies that definitely have the disease, in other words there can’t be very much argument. Now in the real world patients don’t fit boxes and many patients have a range of symptoms which are not part of the classification criteria which we can infer sometimes is associated with antiphospholipid syndrome, so some people have problems with the mitral valve, have a little bit of leakage in the mitral valve, some people have livido which is a skin rash, some people get headaches, many people feel fatigued, tiredness, some people can get aches and pains and these are not necessarily the criteria we use to classify antiphospholipid syndrome for studies but they can be used as additive pieces of evidence that somebody may have antiphospholipid antibodies which are causing problems with those symptoms. Now the important thing is to get the right test done and the right tests, the three tests that we commonly use are the lupus anticoagulant, the anticardiolipin antibodies and beta2 glycoprotein 1 antibodies, and these are the most widely available antibody tests so get those done, make sure they’re persistently positive and then get referred if you feel the symptoms are indicative not of necessarily of antiphospholipid syndrome but of being related to the antibody, then get referred to a rheumatologist or a hematologist for interpretation of those tests. Remember the wider world have lots of symptoms which can also be due to many other factors, I see a lot of patients for example with hypermobility and that can be linked to many of the symptoms which I think you’ve just mentioned Charlene, so it doesn’t have to be antiphospholipid syndrome and remember the vast majority of patients with antiphospholipid antibody tests which are positive never get thrombosis, and that’s really important to remember that just having an antibody does not mean to say you have a disease, really important.

Charlene: Okay I think that’s a very important thing to know and it actually leads on quite well to one of our next questions that have come in. So David Hughes has written in a few times, I believe that Graham answered one of his questions previously in a live Q&A and he has some concerns about his daughter who he thinks may have APS, I believe she’s quite young so he’s struggling to get a diagnosis at this stage and he reminded us that previously in a Q&A Graham suggested to him that his daughter have all of the APS tests done and he said even the most current ones. So I know when you were just explaining there you mentioned the three most commonly used and Graham seemed to suggest that there were others and that she should be having those done as well. David has written in again saying that he is having some trouble finding a place that is able to do those more recent tests, do you know of anywhere that he can have the full range of tests carried out or would you suggest at this stage to just go ahead and get the three that are most commonly used?

Arvind: Well getting the three most commonly used ones is the best starting point, now there are a group of patients who would potentially have symptoms or even thrombosis who test negative on those three antibodies and it is certainly worth thinking about additional testing in those kind of patients. There are all sorts of tests including antithrombin antibodies for example and so there are other tests, their relationship to antiphospholipid syndrome is not yet fully clear and it’s likely to be a complex relationship, much in the same way as the conventional test I’ve mentioned is as well, in the fact that not everybody who has positive tests actually gets an effect from them. So I would certainly start with the conventional three tests and if they’re negative first off then I normally repeat them anyway and the sensible thing I think then is to get those interpreted by either a rheumatologist or a hematologist and generally there are some labs that will do these tests, they tend to be specialist labs and it’s not always easy to get those tests, we at London Bridge for example should be able to do those tests, they’re often sent out to other laboratories that do the tests but London Bridge is private and on the NHS it may be rather more difficult to get your hematologist or GP to do those other tests. So it is a difficult issue and it’s something I’m looking at at the moment and pre-COVID had certainly thought about finding out the availability of many of these tests, but you’ll find they’re quite restricted, particularly the newer test that Graham mentioned and I mentioned as well. So I think I would start with the conventional ones and see what they show first, get them interpreted and get your daughter’s symptoms interpreted as well because they may not be due to APS, that may be due to something different. 

Charlene: Great thank you Arvind, I think it’s important to know and the struggles that people are going through especially with these early stages with the tests and things it can be quite difficult to get hold of them but that is a very good starting point and then to go from there as best as possible. We’ve had a comment from Kim who is watching us live, thank you so much Kim for joining in great to have you watching the video. She has expressed some frustration that I think a lot of APS patients feel which is that so many doctors seem to not know the treatment for APS and “they think my joint pain and fatigue is in my head, how do i find a doctor to treat me correctly?”

Arvind: Well that’s the golden question really and you know I think it depends where you are and what access you do have to doctors such as hematologists and particularly rheumatologists. They then have to be understanding of the broad range of symptoms that can be associated with antiphospholipid antibodies and syndrome so it is a difficult question to answer. All I would do is ask around, there will be several forums on the internet and several sites for example the GHIC site on Twitter and on our website we’ll have the names of experts who we feel provide the best care both in the UK and abroad for antiphospholipid syndrome and there will be a degree of understanding from these doctors that, you know we’re not just talking about recurrent miscarriages and thrombosis, but the net of symptoms which antiphospholipid antibodies can be associated with is really quite wide, so you do need to have the right person. Have a look on forums, have a look on our website, have a look on Twitter and you’ll get more information about the experts that may be able to help you.

Charlene: Definitely, just to reiterate as Arvind said we have got the GHIC consultant directory over on the website so definitely that is a very good place to start to try to find someone suitable for the treatment and care that you need.

Arvind: There is an APS specialist in every continent that is an expert medical expert for GHIC, I’m afraid we don’t have one in the North Pole, in the South Pole or Greenland

Charlene: I think we have to work on that, definitely an area for improvement but very impressive nonetheless! Great well we’ve had another question come in from Ronita who’s watching us live, thanks for joining Ronita, and she has tested triple APL positive and has as of yet experienced no clotting and she just wants to get a bit more information about how likely a clot would be, she says she’s currently on aspirin, she has a child and and she got diagnosed six months ago after giving birth two and a half years ago, both SLE and APL, so what is the likelihood for her then since she’s not experienced a clot so far, is it likely that she will experience one in the future?

Arvind: Well it goes again to the heart of does having an antibody mean you have a disease and the answer is no, it doesn’t mean she will have a clot but clearly with triple positivity and by that what we mean is the three conventional tests that we do, lupus anticoagulant, beta2 glycoprotein 1 and anticardiolipin antibodies are all positive, the risk seems to be highest in those who have dual or triple positivity in terms of the likelihood of thrombosis, and of the three the lupus anticoagulant seems to be the highest risk. So there are variations in risks that people may experience, but for this particular lady being triple positive is clearly going to put her at higher risk of events and so we normally would recommend aspirin, low-dose aspirin 75 to 100 milligrams is the the recommended kind of dosage, and remember you can buy these aspirins over the counter now as well, they don’t have to be prescribed. So low dose aspirin would be recommended for any patient who’s got persistently positive antiphospholipid antibody tests and particularly with a high risk profile of triple positivity. Now added to that is the burden of the lupus, and lupus itself in common with many inflammatory conditions also raises the risk of thrombosis and it’s really important to bear in mind that the thrombosis risk from inflammatory conditions like rheumatoid arthritis, ankylosing spondylitis but also lupus can also be raised just by that condition alone, so you’ve got an additive risk for that. So what you’re talking about is a higher risk but not a guarantee thankfully, so the the best thing to do under those circumstances is take the low dose aspirin, 75 milligrams in the UK, what I normally would do is add in hydroxychloroquine and hydroxychloroquine is a good drug for lupus but it’s also a very subtle blood thinner and we use it as additive treatment in patients who have either antiphospholipid syndrome or antiphospholipid antibodies, and there are other drugs like azathioprine which have also be been used at times as additive therapy in APS, so there may be justification for using these other drugs in conjunction with a low-dose aspirin.

Charlene: Great thank you for that Arvind that’s a very thorough answer, so kind of going then a bit more onto the other spectrum obviously that lady had just had a child recently, we’ve had a question sent in from someone who is pregnant at the moment and and she has been diagnosed triple positive APS and a history of blood clots. She has asked besides plaquenil, therapeutic lovenox and baby aspirin, is there anything else a pregnant woman and with that triple positive should be taking? 

Arvind: At this moment not really, not should be taking. The evidence is really for APS, for obstetric APS, is that low molecular weight heparin – so things like lovenox for example and low-dose aspirin in combination – are really what help the effect of other drugs, is less well-established, I normally do ensure that the patients are on hydroxychloroquine because many patients also have associated conditions like lupus for example and it will prevent flare-ups of the lupus. Azithral is sometimes used if control is difficult or if there have been problems in previous pregnancies, for example if patients have had recurrent miscarriages despite  being on low molecular weight heparin, despite being on low-dose aspirin, then azathioprine and hydroxychloroquine can be used as additive therapies. So there isn’t any good evidence that using any other drug is particularly effective, as I say if you’ve got recurrent complications, azathioprine hydroxychloroquine, low-dose prednisolone is another one which may add value in some cases of recurrent problems, and again it’s something that can be added in but only really if you have recurrent problems despite adequate therapy and intravenous immunoglobulin, or IVIG is another drug which may be used in very resistant cases where recurrent miscarriages occur despite optimal therapy. So these are all options, the evidence is best for hydroxy as far the evidence is best for low molecular weight heparin and aspirin hydroxychloroquine and azathioprine are additive therapies which can be used in resistant cases where miscarriages are not controlled and then you have low-dose prednisolone and intravenous immunoglobulin in those cases where it is felt that even they those other agents are not effective.

Charlene: Okay great thank you for explaining those different options Arvind. We’ve had another question just around general APS coming from Mavis Beaven, thank you for commenting Mavis. Mavis said “My daughter is having what looks like angina, she had ECG and blood test taken that showed no heart problem and the doctor said that it may be gallstones that can mimic angina and we’re waiting for the scan at the moment. It’s very worrying as the pain is excruciating”, what are your thoughts on that? 

Arvind: So if you just repeat the the the symptoms again Charlene

Charlene: Yeah of course, she said that it looks like angina and she said that the blood taken showed no heart problem and the doctor just said that it may be gallstones as gallstones can mimic angina, they’re currently still waiting for the scan though and she doesn’t describe any other other symptoms, but in terms of it mimicking angina do you know anything about that, do you know if the two can be confused regularly? 

Arvind: I’m not sure whether this questioner has got antiphospholipid syndrome or antibodies or any other condition, it just said she had ECG and bloods taken that showed no heart problem but I’m assuming there’s underlying APS as well?

Charlene: I’m assuming so 

Arvind: So let’s take the the assumption that there is no APS, could the symptoms be APS could be one question and the answer is yes it could be, thrombosis does occur and heart disease, heart attacks particularly can be a feature of APS so you know that certainly could be an explanation, it wouldn’t be a common one and in general if it’s very severe pain it’s unlikely to be cardiac heart attack related, heart attack generally doesn’t cause severe pain in my experience it can cause a kind of a crushing sensation, a bit like a heavy weight on the chest and can radiate down the arm or up to the jaw usually the left side, severe pain suggests something slightly different to me and that can be anything from the stomach causing spasm in the gullet reflux of acid. Gallstones would certainly be in that domain usually right-sided pain in the what’s called the right upper quadrant, in other words just below the ribcage and the pain is usually centered there but it can radiate to the center of the stomach. So it’s a difficult question to answer because the context of APS can cause severe pain, I’m not really clear whether this question has actually got anything related to APS because there are many other conditions that can mimic these kind of symptoms and gallstones certainly would be one of them. 

Charlene: Thank you Arvind, perhaps we’ll get some clarification from Mavis and we can always then send her an email after this Q&A to clarify as well. Janet has commented live from Facebook, thank you for tuning in Janet, and said “Good afternoon, so nice to meet you and heard great things about you Dr Kaul”, so that’s lovely and she says “I’ve not had the lupus anti-cardinal as I’m on warfarin and told that it can’t be done, I’ve tried a home testing kit and it wasn’t reliable for me, is there a link that perhaps I am triple positive and that’s why it didn’t work?”

Arvind: That’s why what didn’t work sorry, the therapy didn’t work is that right? 

Charlene: The home testing kit I believe she’s referring to the home testing kit

Arvind: Okay so I mean I’m not really clear because it depends what your original tests were and you know warfarin does affect the way that lupus anticoagulant is measured, so it doesn’t mean to say you can’t do it, it just means it’s not a reliable measure and so if you’ve got a home testing kit for testing lupus anticoagulant it’s going to be affected, whichever test you do it’s going to be affected by the warfarin, so you may get a false positive, if it’s negative that’s reassuring. Obviously this patient is on warfarin already and I guess, sorry Charlene I may have missed this but have they got antiphospholipid syndrome already?

Charlene: Yes I believe so she just says she’s not had the lupus anticoagulant as she’s on warfarin but yes I believe been diagnosed with APS already 

Arvind: The issue then is actually does it really matter whether you’re lupus anticoagulant positive or not with the diagnosis and the answer is it doesn’t really, if you’ve been given that diagnosis and if it’s been on both testing as well as the symptoms that you’ve got then the management is pretty identical whether the lupus anticoagulant is positive or negative. Now some of the other tests one assumes was positive at some point, ideally twice to give that diagnosis, so adding in the lupus anticoagulant as an additional test won’t add any value to the therapy which still remains depending on the type of clot, warfarin with an INR which will vary depending on whether this is venous or arterial so I wouldn’t fret too much about lupus anticoagulant and whether this is positive because really it doesn’t affect the overall management and whether you’re triple positive or single positive that also does not really affect the management, because the key issue here is that you’ve had a thrombosis which is linked to one or other of the antiphospholipid antibodies and the therapy is really based along that and is generally lifelong with warfarin, so whether the lupus anticoagulant is positive, negative, in that setting when you’ve already got the diagnosis actually won’t change the management so don’t worry about it.

Charlene: Okay thank you for clarifying that Arvind, we’re just going to take one more general APS question before we move on to some of the COVID and vaccine related questions. So last one coming from Linda and she said that in the past she has had three miscarriages, she tested positive after the third one for APS after that she had a successful twin pregnancy with aspirin and heparin and prior when she donated blood they noticed that her blood flow flowed very slowly and so they said that she had had APS and the diagnosis went from there. She asks “Should I now be on blood thinners at this stage?”

Arvind: So from my understanding she’s had what’s called obstetric APS and so the issue then is if the blood tests are persistently positive thereafter then yes I think low dose aspirin would be the right thing to do if the test is still positive. Now patients with obstetric APS can get other types of thrombosis as well and so it is important to treat them as potential APS patients and treat them in pregnancy for the recurrent miscarriages and then after pregnancy, depending on what their thrombosis risks are and in general, that will be at the very least low-dose aspirin, so that should be continued long-term particularly with obstetric APS.

Charlene: Thank you for that Arvind, as I said we’re now going to move on to some of the COVID related questions and we’ve had a lot sent in from people that would just like some clarification and obviously still have their worries and doubts COVID related impacts when diagnosed with APS. So we’re starting off with a question from Sanjita who is talking about chronic infection and due to the chronic viral infection, CMV LA positive and she says “If you’re only on aspirin are you at high risk of thrombosis if you were to catch COVID?”

Arvind: So the question is does COVID, if you just look at the COVID side of it, COVID does seem to increase the risk of thrombosis in a significant proportion of people. Now to an extent that’s not surprising because inflammation, infection of all kinds is a risk factor for thrombosis and we’ve already said that many inflammatory conditions are by themselves a risk factor for thrombosis infections, certainly can increase your risk of thrombosis and in particular COVID seems to be particularly adept at doing that, probably because it’s a very markedly inflammatory state and inflammation links to the clotting system and may tip the balance in favor of blood clotting. So if you’re already on aspirin it’s not really clear whether that will be adequate to prevent you having thrombosis if you get COVID, so that data as far as I’m aware nobody’s really studied that. The general gist of what we do is to give prophylaxis with low molecular weight heparin if somebody comes in with severe COVID rather than aspirin, and that’s the way we try and prevent any blood clots and again the right strategy for patients with antiphospholipid antibodies is not yet clear, but in general what I would advise anybody to do is remain on the medication that you’re on and if it’s low dose aspirin continue on that, you will have therapy with low molecular weight heparin as is standard now for all hospital inpatients to try and prevent blood clots and if you’re unfortunate enough to have a blood clot then that will be treated in the standard way with heparin and then one of either the newer anticoagulants or warfarin. The issue then is if you’ve got antiphospholipid antibodies before COVID the assumption will be, although we don’t know yet, that your risk may be higher but it wouldn’t change the overall management of aspirin you should continue and heparin you’ll be given if you’ve had thrombosis APS already and thrombosis clearly you should continue on the anticoagulation that you’re on, warfarin most commonly, and that will be possibly temporarily withheld depending on how well or unwell you are and maybe withheld with low molecular weight heparin being used to augment that therapy. The flip side to that is that COVID itself seems to be associated with antiphospholipid antibodies and some people seem to develop these antibodies and at the moment we’re not fully clear whether these antibodies cause the thrombosis that is associated with COVID or whether these are different or overlapping mechanisms, but we think thus far that this may be what’s called an epiphenomenon, in other words in common with many infections COVID also encourages the production of these antibodies and that’s the case with many infections we’re already aware of that antiphospholipid antibodies can be formed during infection, so that’s not anything different to what we already see and that’s why we’d retest antibodies 12 weeks apart because infections can be a common cause for positivity with these antibodies and so we re-test after the infection has got better to make sure this was a true positive. So infections do have a link, COVID has a link with thrombosis, don’t change anything in your management until we know a lot more about whether antiphospholipid antibodies are truly involved in thrombosis and that at the moment we think they are probably an epiphenomen, the sort of thing that we would find in any infection that causes antiphospholipid antibodies and so no additional treatment is necessarily recommended in that scenario where you’ve got antibodies due to COVID and that again goes to the heart of not everybody with an antibody will have a thrombosis.

Charlene: Okay thank you Arvind and then in terms of long COVID, is there any data at the moment that suggests that APS patients are at higher risk of developing long-COVID or experiencing symptoms for a longer period of time than that of someone who didn’t have APS?

Arvind: No there isn’t any good data on long COVID at the moment and yeah this is the sort of thing that we need to establish, we need to get more data on it and remember APS, unlike diabetes, heart disease, where there are quite clear links with severity of COVID, will not be nearly as common thankfully and so the association between COVID patients with APS and long COVID is yet to be determined. For those of you who may not know, long COVID are a set of symptoms which haven’t yet really been clearly fully defined but may include things like fatigue, tiredness, some people experience palpitations, headaches, some people get abdominal symptoms, palpitations so there are a broad range of symptoms which some people with COVID experience after supposed recovery. It’s not clear whether long COVID is an immune mediated condition or whether there are other mechanisms which might be important and by that I mean just looking at one of those symptoms, fatigue for example, there is very good evidence that fatigue is not necessarily always linked to the activity of a particular condition and the best example is lupus, where some people can have quite quiet lupus and feel very very fatigued and there are many studies that suggest that fatigue is probably an overlay of several issues, particularly in terms of lifestyle and also support networks, psychological factors particularly stress, anxiety, depression, all of these influence fatigue and tiredness to a greater or lesser degree but all are important and it’s likely that those kind of overlays with long COVID will also be important as many patients who experience long COVID were previously very well and so these kinds of effects like stress, anxiety, concern about future, concerning about the effect the condition will have on their working patterns, on their lives, relationships, all of these are likely to contribute to long COVID as well, so long COVID is not yet well thought through in terms of the criteria which we use to define it and we don’t yet know whether this will be long COVID lasting for years and whether it’s immune mediated or not and the data on APS as yet is really very unformed and that’s simply because it’s not as common a condition as many others that we do know about.

Charlene: Yeah that makes complete sense and it is at this stage unfortunately just a bit of a waiting game until there is more data into it and we gain a better understanding as the months do go on. We’ve had quite a lot of questions as you can imagine around the vaccine and particularly with the news that was announced this morning that the Astrazeneca vaccine has been suspended in several European countries due to reports of blood clots. Do you know if this has occurred in the UK and a second part of that question would be what would your recommendation be to those APS patients who have had the first shot of the Oxford Astrazeneca vaccine and await their second in the light of this news. 

Arvind: It’s really difficult because you know I don’t know why the Astrazeneca vaccine has been picked out of all the vaccines, vaccines generally are very safe and unless there’s robust data that they are in any way harmful, I think you know for me if I had the Astrazeneca vaccine, the first one, I would continue to the second one as giving the the best chance of protection. There are many considerations as to why the EU has said a lot of things about the Astrazeneca vaccine, some may be political. I don’t know I’m not privy to those kind of decisions. The data that we have so far, and just to give you an example I think Germany and France for example this is no criticism this is just you know different interpretations of data, did initially say that the Astrazenica vaccine should not be used for over 65 despite it being used in the UK for over 65s and that position has now been reversed and there is now good data, particularly from a Scottish study that the Astrazeneca vaccine will be as effective for over 65s as it will be for other cohorts and groups of patients. So I think we need a lot more robust data, certainly my understanding is there hasn’t been any significant background problems with the Astrazenica vaccine and so until more robust data comes out you know I’m not changing my advice which is have the vaccine whichever one you’re offered and as I say I think we need a lot more data, I’m not saying all vaccines are completely safe, some people do have side effects but in general vaccination through the ages has been a very very effective way of reducing disease burden and in particular for patients who will be at high risk, antiphospholipid syndrome, those on immune suppressing drugs, those with other conditions like lupus for example. My personal view is please have the vaccine because, yes, you may potentially be at higher risk of getting severe coronavirus and do whatever you can to prevent that and at the moment I don’t think the data is robust enough for us to withdraw any specific vaccine. 

Charlene: Okay great thank you Arvind, I’m sure that will reassure a lot of people that are watching because as you said it’s vital that people, if they are at higher risk do and have the vaccine to be protected and the benefit that will actually come from having the vaccine and the level of protection that that gives greatly outweighs the risk of some side effects. On the topic of side effects I know you said that people will experience side effects and obviously some people we’ve had write in that they have experienced these side effects and are just wondering how long they’re going to be lasting for, so Kay on Facebook said that since having the vaccine her joint and muscle pain has ramped up a bit along with fatigue. Could this be her body reacting to the vaccine? She’s not the type of person who usually experiences this but doesn’t know how long she should expect these symptoms to last for.

Arvind: So again we haven’t had any specific background noise that the vaccines are in any way harmful for patients with autoimmune conditions. My personal experience is I’ve had one patient out of, you know if we look at the last three four weeks, out of I guess off the top of my head maybe 70, 80 patients who’ve told me they’ve had the vaccine with these range of conditions, not just APS but lupus, I’ve had one patient who feels there may have been a flare-up in some of the symptoms in that case with sjogren’s syndrome so undoubtedly vaccination can have an effect on some people to give them almost like a flare-up and part of that may be the way that vaccines work, of course they do that by stimulating the immune system and the risk with that is of course you may end up with a cascade of generalized over stimulation which may flare up an underlying condition. But I have to say that’s one case I’ve seen out of all the other cases, you know we’re talking about 95 plus they’ve all had the vaccine and not really had any specific problems, most of them have had for a few days afterwards you know a little bit of a reaction, as I had for that matter, stinging in the arm maybe a little bit of fever and maybe one or two joint pains but nothing significant and most of the those patients who’ve had the vaccine have got better. So I think if you’ve had a reaction like that, could this be actually a co-incidental flare-up or could the vaccine have triggered a mild response? Both of those are possibilities, treat it in exactly the same way that you would a normal flare-up, take analgesics if you feel a little bit feverish, there are some people who might need to increase steroids if they’re on background steroids or who might need steroids if they feel this is a full-blown flare, yes that might potentially reduce the effectiveness of the vaccine but on the other hand they may still get significant benefit with a vaccine even with those immune suppressing drugs on board, so treat it much the same way as you would a normal flare, yet it seemed to and this may just be a coincidental flair or potentially you may be one of the very few people that does get a flare up with vaccines and that unfortunately is going to be one of the potential side effects, although as I say in my experience that has been a rare side effect. 

Charlene: Then if someone is in the midst of a flare, say they’re scheduled to have their vaccine in the following few weeks and they are in the midst of their flare up, is it then recommended that they try and postpone it until the flare-up has subsided just in case it’s kind of you know doubling up on that if they were then in the case of flare-up to receive the vaccine and experience more enhanced side effects because they were already in the midst of a flare and would you recommend that they postpone it or are they still safe to go ahead even if they are currently experiencing a flare-up?

Arvind: They’re probably safe to go ahead but I think if I was you know I think this is probably more of a common sense question really, if I was in the middle of a flare of lupus or any other autoimmune condition, if I wasn’t feeling well I think the last thing I would want is a vaccination which you know vaccines as I do most of them are absolutely fine as I’ve said but if you’re the type of person that may get a little bit of fever, a little bit of a shivering after a vaccination and that certainly is a normal side effect you don’t really want to be adding that to the symptoms that you’ve already got, you want to be actually treating the underlying condition and that then goes to another point which I made in the last answer that that if you’re going to be treated for a flare-up then the vaccine efficacy or effectiveness may not be quite as good if you are given high dose steroids for example so under those circumstances my recommendation would be actually just delay the vaccine if you can get the flare looked at and then have the vaccine afterwards. For some of the patients that we’re doing particularly with a drug called rituximab another one called cyclophosphamide which we use for more severe autoimmune conditions, we’re actually getting patients vaccinated before they have those infusions because there may be a slightly higher risk of severity of COVID with those specific drugs, but for most other patients you know have the vaccine, keep to the same drugs and for those of you who are having a flare up I think it’s probably sensible just to get better from the flare-up, delay the vaccine for two, a couple of weeks or so and just take precautions in that period, masks, social distancing all the sensible things that we’ve all been doing over the past year and then have the vaccine when you’re a little bit better.

Charlene: Great thank you for clarifying that I think that’s very good advice and in terms of then the side effects, do you know at all if someone’s had the first dose of the vaccine and they experienced quite intense side effects, is it more likely that the second dose and they won’t experience those side effects to the same extent if they’ve already got some antibodies within them from the vaccine or is it actually the other way around that the side effects could be more severe from the second dose? 

Arvind: I think it really does depend what the side effects mean so some people can have allergic side effects and that can be anything from severe reaction where the injections gone in redness around the site not just redness but really quite severe redness and it may mean the person is a little bit short of breath, they feel their lips are a bit swollen or their tongue is a bit swollen, that’s an allergic reaction to either the vaccine or a constituent of the vaccine and under those circumstances they shouldn’t have the second dose. Now if you get a reaction which is really par for the course for many vaccines in other words a little bit of shivering you know maybe a fever on the first sort of 24-48 hours after the vaccine there have been reports that the second shot may be a little bit worse so you may want to either delay it or speak to your doctor as to whether that severity of reaction really warrants a different vaccine or actually just holding off the second dose for the time being, so it is a difficult question to answer and it will really depend on the severity of the response and what type of response, with allergies it’s an absolute no-no to have the second dose with anything else it’s possible to have the second dose because these kind of reactions are pretty common with vaccines and rarely are they troublesome, so it then becomes an issue of how severe the reaction and whether somebody’s prepared to go through that again for the benefit of the vaccine and these are difficult questions to answer, they’d really go to the heart of personal choice, somebody may think actually I’d rather not go through that again I’ve had one and that’s it, as I say those two effects and side effects are really critical to distinguish between as to what happens next, allergy no have a different vaccine, side effects yeah you can have the same one, expect maybe something similar we don’t yet know in what proportion of patients the effect of the second seems to be worse if you get a bad reaction in the first, these are all anecdotal reports usually I’m not worried about these because they’re rarely troublesome if you have had a reaction like that. 

Charlene: Thank you for clarifying that and you mentioned there that if someone did experience some severe side effects and or more intense from the first dose that they might choose to delay and the second dose if possible, just coming on to that and the time frame in which to take the second dose obviously there’s been some change around this and we did have a question just around the time period between the two, Angela commented in saying ‘cancer patients are getting the second vaccination earlier than the recommended 12 weeks, should autoimmune patients whether they’re on immunosuppressants or not also be considered for a vaccine the second dose prior to the 12 weeks?’ and has also said ‘how do we know autoimmune patients know if the vaccine has worked and at what level?’, so two questions there from Angela. 

Arvind: I mean that these are questions which we don’t yet have the answers to Angela so in general you know we’re now doing eight to 12 week gap between the vaccinations and initially we didn’t have very much evidence behind that but I think there is now good evidence that even with one shot the proportion of protection can be as high as 80 percent and the second shot will give you the extra 10 to 15 percent protection, so there are certainly good grounds for delaying by 12 weeks, first shot to the second shot they’re also societal grounds in other words more people get their first shot if we delay like this and other countries I think Germany amongst them are also doing a similar kind of thing, allowing more patients to be vaccinated before the second shot. Now the question then is cancer patients are a specific cohort of patients who undergo very intensive therapy and they’re being given the second shot early because there is some evidence that cancer patients may not respond quite as well to the vaccination protocols that we now have and that might be, and it’s not yet clear because of the immune suppressing drugs they get, it may also be because some cancer patients have invasion of their bone marrow which produces the antibodies and therefore the vaccination may not be particularly effective because they don’t have enough of the cells that produce the antibodies, so it could be either or both of those we don’t know if that applies to immunosuppressed groups and studies are now ongoing to see what the level of response is in immunosuppressed patients. The only thing I would say is looking at it from the non-vaccination side of things we have many many patients on immunosuppressive drugs and if we had felt that immunosuppression was a really high risk of severe COVID I suspect rather like diabetics high blood pressure patients we would have seen the floodgates opening to these kind of patients where they’re locked down or not and we just haven’t seen that and it may well be and we’ve certainly had some experience of patients already on immunosuppressive drugs who’ve actually recovered remarkably well despite the immunosuppression and it’s not thought that immunosuppression will be a particularly high risk of COVID with the exceptions potentially being rituximab and cyclophosphamide, as I’ve said earlier many of the other drugs and certainly some drugs such as mgtnf drugs for rheumatoid arthritis may actually improve the prognosis if you get covered infection and there’s certainly many immunosuppressants that are used now that actually are used to treat severe COVID so there is that side of it that actually you may not be as high risk as you might think you are with autoimmune conditions and COVID and immunosuppression and the data that we have at the moment regarding vaccines is not yet complete so we can’t give any specific advice except to say have the vaccine we recommend it and even if the protection that you get is less than it would be without the immunosuppression it may be that some protection is better than none and so that’s why we’re still recommending it, until we get more data as to the effectiveness of vaccination in immunosuppressed patients.

Charlene: Thank you Arvind and just to clarify, Maggie sent in a question saying out of all the vaccines do you support APS patients taking any of the vaccines, are there any that should be avoided where do we currently stand with that?

Arvind: No there aren’t any that are currently that we’re saying should be avoided,  we’ve yet to see more data really on anti-phospholipid syndrome specific patients although many patients who’ve had other forms of thrombosis will also have had these vaccines so looking at the wider thrombosis community as it were, you know we haven’t had yet any background to suggest that these are dangerous vaccines we haven’t had and it really is too early to say whether there’s any potential effect on autoimmune conditions but my personal experience is that it doesn’t seem to affect autoimmune conditions in an adverse way so the lack of data is an issue of course but we also have to look at the history of vaccinations, you know there’s a tendency to think about these vaccines as the first ones we’ve come across, no we’ve had vaccination for hundreds of years and so throughout all of this period there hasn’t been any background with autoimmune conditions, lots of people worry that they may get an autoimmune condition from vaccination and that hasn’t been really borne out by the large scale epidemiological studies that have been done through the the last few decades, so our advice is get vaccinate,  some protection is likely to be better than none and I think on a wider scale I’m sure that everybody wants to get out of this situation that we find ourselves in and we could either not get vaccinated and put ourselves in a position where actually we could catch this, this may be around for a long while yet or we get vaccinated and hopefully end these crazy lockdowns that we’ve all had to go through, which choice do you make is a very personal one, I don’t make judgments on behalf of other people but I know from myself I’d rather get vaccinated, get out of this situation so that we can all go back to do what we were doing before. 

Charlene: Yeah I think yeah that’s a very good note to end the video on Arvind I do agree with you and obviously it is a personal choice for everyone but I hope that the answers that Arvind has given today and the questions that he’s addressed around COVID and the vaccines have reassured you somewhat, as he’s mentioned there is information on the GHIC website as well which we will keep updating as we get more data but as I said I think everything that Arvind has discussed today has been really informative so I hope that you’ve all enjoyed it as well, thank you so much Arvind for taking your time, I know we’ve taken an hour of your time now so I won’t keep you much longer but thank you so much for doing these Q&A’s they really are useful for our APS community and I know that it’s very well received so thank you so much and we’ll definitely be scheduling in some more in the coming months. I’m sorry if we haven’t got around to answering your question today but we will try and get round to each of them next time as well and so stay tuned for some more information about when the next video will be, but for now I’ll just say thank you so much again Arvind it’s been great and chatting to you and getting these answers, look forward to discussing and things further with you next time. 

Arvind: It’s a pleasure and I hope that’s been helpful for everybody that’s called in. 

Charlene: Thank you very much I’m sure it has and if you have found it helpful as I said at the beginning of the video if you can make a donation to GHIC that would be extremely appreciated, the only way that we can continue to do this vital work is with the donations so if you can spare any amount, large or small then please do head over to the GHIC website and make a donation, it would be extremely appreciated. Thank you.