Research by Glasgow and Birmingham Universtiy found that 2-5 immunosuppressant adults had low or undetectable antibodies after the two vaccines. I have therefore written to the Chief Medical Officer for Wales and my local MP asking for two critical things;
1. Will the CMO now overturn his letter and once again state that based on this research that all clinically vulnerable adults need to shield and
2. Arrange for all clinically vulnerable individuals in Wales to urgently have an antibodies test to determine if they have any resistance to covid 19 and therefore able to identify who in that group are at extreme risk.
If the CMO is not going to action 1&2 above then how will clinically vulnerable adults be kept safe.
I urgently ask all members of this site and the NRAS to start lobbying government regarding the above and for the NRAS to provide a template letter that members can send to their local MP, Health Board and CMO for England and Wales.
Written by
RobbieM
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I think the clinically vulnerable have been forgotten. How can we integrate back into society when we have no idea if we have any antibodies to assist with fighting covid 19. Where did you get your test from.
Just look on Lloyd’s or Testing for All website and pay online and you set up a password/page for yourself so they can get back in touch via email for the results. Be absolutely sure to follow all instructions to collect the sample itself.
I think this is not straightforward and so far based on 600 people compared to the millions who have had the jab. I've read the report from my kidney patients point of view as well as pANCA and RA and to be honest don't pretend to understand it and going to wait for it to be clarified as the figures from 600 people may not reflect the overall situation. Moreover I've been offered an antibody test and it was said at the beginning that the jab effects would wane and a yearly top up would probably be needed like the good old flu jab we are all so familiar with.I do understand why people need to be proactive in protecting themselves and I certainly am by continuing to wear a mask etc and avoiding crowds but do believe that for the sake of my mental health that some normality is vital. I dread the thought of yet more shielding and will wait to see what happens next.
The proportion of patients with lower levels of antibody reactivity was dependent on the disease cohort, with the following responding less well than the baseline for health adults
87% for those with Rituximab treatment
51% for those with inflammatory arthritis
29% for those with haemodialysis
42% for those with haemodialysis receiving immunosuppressant treatment
36% for those with hepatic disease
10% for those for solid cancer
33% for those with haematological malignancies
I would prefer to know what my antibody score is and therefore make a judgement on how I then want to proceed
"Initial data from the OCTAVE study found that a proportion of people with suppressed immune systems (including people on haemodialysis receiving immunosuppressive therapy and with Rituximab treated ANCA-Associated Vasculitis) have a lower antibody response after two doses of COVID-19 vaccine. T-cell response (another facet of immune response) was similar to the general population. More research is needed to see what this means for protection." From Kidney patients uk and so it is very unclear as antibodies are only part of the question.
“Less well” than the cohort with no underlying disease doesn’t mean no response, and no one knows what response is protective anyway. I personally think that those of us not on Rituximab and with no other comorbidities should not panic. Especially as the T cell response seems to be adequate.
As others have said, we each need to assess our individual risk. Preferably with the support of our own doctors.
I accept that I probably view things from a different viewpoint as I feel shielding was put in place to protect the NHS, not the patients.
I’m on Rtx & I’m elderly….. ,the latter is thought to be the bigger risk.I refuse to spend my dotage being cowed by fear of what might happen.
I take all possible precautions…but I am still enjoying my life.
It’s hard enough to see an NHS doctor now, without them spending time arranging & then interpreting Platelet tests …..for what……another vaccination campaign?
I’m now getting appointments quicker at the hospitals than it is to see my GP. I had a letter from a consultant On Wednesday that I found that the surgery have had over a week, they have given me a phone call appointment in 5 weeks time from an unknown doctor. Have rang the surgery that this includes urgent changes to medication and several referrals, they refused to act any quicker on the basis that the GP must have read the letter and decided it not urgent. This for instance means 5 weeks on top of the wait for the consultants lists at the local Hospitals. The same as happened with the RA hospital with a letter altering my RA medication, “I’m sure one of the doctors will look at it soon and you “should” get a phone call. We have 3 practice partners two less than when the previous ones retired. Since then they have taken on 26,000 new patients with two less doctors. The head of practice as not been seen by anyone I know for the last 18 months, her car space is always empty. When asking to see her on several occasions each time you are told she is on leave. Second doctor I have managed to see twice, this last March previously February last year. The third as phoned me once. When I went to see him he was substituted by what seems to be a temp fill in.
We had that happen at a surgery I was with…everybody wanted to see a certain doctor….but could never get an appointment.After months it was announced this doctor had left the practice.
I happened to meet the then Senior Partner away from the surgery& asked where said GP was & was told this Doctor had not only left the practice…but had retired at 50 because the treatment he had to provide was so substandard……that unless somebody wakes up the NHS will disappear.
That was about 5 years ago….sounds pretty accurate doesn’t it?
The doctor I spoke to was not criticising the doctor who retired…he was just explaining that, that doctor virtually had a nervous breakdown ….because the conditions he had to work under were so contradictory to the way really good doctors want to work.Not being allowed to mention more than one problem per consultation often misses the real reason a nervous patient goes to a doctor.
But the way a lot of GPs are behaving during Covid is absolutely not up to acceptable standards.
If dentists, physios & hairdressers are willing to carry on their professions….so should GPs. OK…they can have a plastic screen between them & the patient….but hopefully they would have enough experience to recognise a person who needs treatment that cannot be diagnosed over the phone.
The horror stories we hear daily prove that….but it doesn’t seem to stop an awful lot of GP’s wailing they have to “sanitise after every patient.
I remember the days when my GP gave all the children a “sweetie” for coming to see him…..can’t see one have the time or the inclination these days!
You mean 600 is from the Octave so far? That’s about a fifth of the people involved if I understood the earlier articles I read from their website, so I’d like to see the complete findings.
There needs to be more as that lessens the number of RA people and specific meds so hope that info is coming soon. I thought I read it was 5,000 people but numbers could have changed.
The Octave (Observational Cohort Trial T cells Antibodies and Vaccine Efficacy in SARS-CoV-2) trial is one of the largest in the world to have looked at the response to covid-19 vaccination in patients who are immunocompromised. It compared 600 patients, who had a weakened immune system because of their disease process or treatment, with the antibody response of healthy people from the Pitch (Protective Immunity from T Cells in Healthcare workers) study.
The trial included patients with solid organ and haematological cancers, end stage kidney and liver disease, organ transplants, and immune mediated inflammatory disease such as inflammatory bowel disease, vasculitis, or rheumatoid arthritis—patients who were not included in original vaccine trial data.
The findings, published as a preprint on the Lancet site,1 showed that 89% of immunocompromised patients seroconverted within four weeks of the second vaccine dose, as compared with 100% of healthy participants in the Pitch trial.
Overall, 60% of immunocompromised patients had an antibody response equivalent to that of healthy vaccine recipients, but 11% of those with a weakened immune system failed to generate any antibodies.
Failure to seroconvert was particularly high in certain groups" etc etc
I saw this too thank you and also listened/watched Professor Innes from Glasgow on the NRAS Zoom a few months back. Hoping next month brings some more info. It’s not specific enough as yet. x
If will take more than a generalised statement and I’ve no antibodies anyhow so it’s shielding as usual until I can repeat my vaccines. I think the study have just let some preliminary findings out to start with and hopefully will give more specifics soon. x
I agree….we are intelligent human beings & know we must now act really responsibly…..but not be told how to live our lives based on such a small study.On the whole,, although we with RA do need to take extra care, we are not as vulnerable as many recovering from organ transplants or those on hefty chemotherapy for cancer.
It simply isn’t practical for us to be ordered back to Shielding….we all know our own vulnerability & have to act accordingly.
I have also read the report mentioned and am still hoping for the fuller report from the Octave study. I am taking methotrexate in combination with infliximab (ant-TNF) and have concluded I probably am suboptimal as far as protection is concerned but not in the extreme way that those with certain cancers are.
Nevertheless, I'm acting sensibly - don't mix with crowds, and so on - but my daughter is visiting tomorrow for lunch (in the garden if possible otherwise indoors with windows and backdoor open) and I'm quite relaxed. I'm aged (86) and perhaps that makes me more vulnerable, but my daughter is fully vaccinated and has a test before coming just to make sure. That's about all we can do and still have some sort of life..
Exactly…..I like to shop for my own food..but I only go when the supermarket is quiet and I shop for clothes & goodies on line.I do miss going for a wander round the Pound shop for a comfort shop with a friend…but I usually only bought Knick knacks I didn’t need & now I am unpacking in my new miniature house…I rue every bit of Tat I bought…& most of it is off to the recycling tip!
We have been looking after ourselves for nearly 2 years now and we’ve made it this far and we will go on making it!
Ditto! On line shopping, short trips out and a simple life. Some things I miss, but nothing I can't cope without - although I would like the car back in action. My husband failed his eye test in September 2019 when he was hoping to renew his licence for a further 3 years; and I haven't been able to drive because of the RD since 1994. His eye surgeon wrote to the DVLA recommending another test, but no joy so far. They say they are too busy catching up with a backlog to consider his case. So most food shopping is delivered, but we have a small supermarket in the village about a half mile up the road where my husband gets the odd thing or two we might need between deliveries. He can just about manage the walk there and back.
We've considered a move from time to time but can't seem to get going with it. The house is full of rubbish - in the loft, in the garage, just about everywhere. My husband is a squirrel and clings to everything. I manage to get him to rid us of a few things and congratulate myself but the hole is then filled with something he has ordered from Amazon. I still can't manage the stairs after the last flare and am sleeping in the dining room in a, very comfortable, NHS bed.
So we end up having a laugh about life in general. When our daughter comes tomorrow we shall find something else to laugh about as her Dad cooks us some lunch and we have a glass of fizz while we wait.
Look after yourself - and good luck with the clearing out!
It has been particularly trying as I was due to move earlier in the year so did all my packing during lockdown …so I couldn’t get rid of stuff to charity shops et cetera-now I dread opening every box.I certainly wish I had moved i10 years ago ….but it is what it is and I’m sitting here now watching the horses graze and the Sun is shining so I really should be grateful I have managed to do it at my age.
However DVLA don’t believe me…. I have tried twice to change the address on my driving licence online and both times they have asked me for information on the back of my driving licence that doesn’t exist…. I have asked everyone over 70 to look at their driving licence and nobody has got a barcode on the back of their licence ….but the DVLA tell me they don’t believe I have a driving license because I haven’t answered their questions correctly!
Just let them try to fine me £1000 ….which apparently is the fine if you don’t inform them of a change of address!🚗
That place is chaotic - I've heard a lot of people complaining about the service - or lack of it. One of the ambulance drivers was recently telling me he had to wait months for his licence to be approved (they are tested regularly) and was unable to do his share of the driving while out on calls. I know they have been held up by the pandemic, but that DVLA office has never been on top of things.
Be prepared for a fight! But meanwhile, enjoy your new environment - it sounds idyllic.
Me too. The thought of shielding again is not a good thought. Over a year spent on my own - no thanks! I do however, feel that face coverings and testing at events should remain. But that would probably leave us out of step with the rest of Europe etc... I know Denmark have lifted everything now. Or are next month.
My concern is that no one knows what level of antibodies is needed to provide protection so how can we know when to be concerned? I don't see the point of knowing what my level is if I don't know if it is a problem or not. 🤔😕
What more would you think of doing that you aren’t doing now?
I think we are probably all making daily decisions now about how to behave, & apart from locking ourselves in our homes , which I find completely unacceptable,what more can we do?
You can see if you have had any antibody response at all or not as I found out and suspected on Rtx - my slow replenishing B cells - but agree unless there is a threshold/baseline indicated for protection then what is the range we are looking for?
I agree. I don’t want an antibody test because at the moment I don’t think they know exactly what the results mean. We always knew our response would be lower but it could turn out to be adequate anyway. We are each responsible for making our own health decisions. I don’t go to large gatherings and stay outdoors as much as I can, but I’m certainly not shielding. I didn’t, even before I had the vaccine. I will definitely have the booster when it’s offered.
Depends on your RA med(s) and how severely they deplete your immunity and also your co-morbidities. Also if you live in a high risk area. My antibodies test confirmed what I already thought that I had zero antibodies. Rituximab means my B cells are depleted a lot longer than the 6 months recommended to leave between intrusion and vaccine which I did anyhow. I agree you don’t know what level is required of antibodies, but for me to know I don’t have any has meant my consultants are supporting me for repeating the vaccines when my B cells are replenished.
Exactly. We need to have all the facts and figures before we can possibly know. My Rheumatologist, who is absolutely ace and the nicest person, said lots of people were asking her what their antibody response numbers meant and she quite honestly said she didn't know because no-one has been told how much protection we need. Basically, having an antibodies test is a waste of money without interpretation of results. As soon as we know I will be having a test.
According to a virologist that I listen to on the radio he said that antibodies for covid can hide in your body, he did mention in a persons lympnodes. He said that they have a memory and spring into action if you catch it. I was chosen a few months ago to do an at home antibody test, think I did it about 5 weeks after my second Pfizer vaccination and I tested positive for longer lasting antibodies. But, I still would like to know what the situation is with me now especially after hearing and reading the news about people on immune suppressants.
Hi Taji, Well I feel you can’t integrate back in really safely or confidently if you know via a reliable test you don’t have antibodies and if you are unsure if you have or not you may want to be cautious. Everyone has their own idea of what is a safer risk or not. Many people have asked their rheumatologists. Testing for antibodies may not help if you don’t know how many you need to be deemed protected enough, but at least you’d know if you have them or not. I feel antibody testing after Covid vaccinations for the immunosuppressed may be given as part of a standard procedure in future. You may want to look for the Roche spike protein antibodies test online, via Lloyd’s. The company I used are out of stock. (TFA)
You need to be able to space your RA medication if it’s known to interfere with vaccine efficacy, that’s for sure and maybe monoclonal antibodies will be an option in future where the vaccines have not worked for the immunosuppressed. I would think the medical experts are working on that but how soon to use them as prevention I don’t know. I know people in the USA who have used them to recover quicker from the virus.
At least it seems priority will be given by the JCVI on the booster but I feel as we are a minority, even if quite a number of people affected, it’s never going to be enough to reverse the Boris government decision in no shielding needed. Maybe your situation could be different in Wales, or in Scotland. 🙏🏻💗
This research looks at a range of people with specific problems, but there are many other risk factors for severe disease. And these people are also clinically vulnerable for different reasons, and nobody yet knows if there are other groups who have not responded to the vaccine fully.
I didn’t actually think clinically vulnerable people were advised to shield anyway for last x months - I thought it was only clinically extremely vulnerable? CV people have been taking their own decisions surely, and looking after themselves.
I think that most of us were classed as CEV and advised to shield but inevitably I suppose, the lists were a bit inconsistent.
I was put on it - incorrectly in my opinion so I chose to just be extra-careful. It was unsettling to get repeated texts and emails with dire warnings but conversely, others were left off it who felt very vulnerable and weren't able to get the support they needed.
All this adds to the concern people feel about the efficacy of the vaccinations, I think 😕
I assumed most of us were CV.... (I’m a classic DMARD & biologic so assumed that). I thought only people also on steroids and rituximab or with other comorbidities or very old were CEV.....
Seems a bit uneccessary (sorry Taji) to suggest clinically vulnerable should shield, although maybe a point to do something extra for CEV.
I agree with you but I was classed as CEV by both rheumy team and GP surgery despite only being on Methotrexate and Hydroxychloroquine and having no other health issues (60 at the time.)My rheumy team apparently made the decision to put all their patients on the list rather than assess each one and a GP told me that they're "scared" of Methotrexate... 🙄
All this uncertainty hasn't helped people's confidence in the system 😒
I am part of a trial having had covid in October and then the two vaccinations I am on benepali and sulphazalizine. From the start of the trial I had antibodies but no one seemed to know what level of antibodies were good. Around April I was told I no longer have antibodies. I didn't shield throughout the pandemic and continued to work as I felt I couldn't cope with not being allowed to work apart from seeing my sister's its the only time I really have contact with others. From what I have read on Quora there is no way of knowing how well the vaccinations will protect although I think they still have some effect from what I'm reading even just not to be very unwell. There are no certainties in life except that we will all eventually die and for me I would rather try my best to stay safe by proper hand washing but I still want to live so even if shielding became possible again I wouldn't but I think we all have personal fears and will be guided by ourselves. Life is for living while you can but it's a personal opinion.
Honestly, I don't see what difference it will make testing people for low antibodies. Yep it's great to know but what can they do for us at this point? I stay home as much as possible, stay away from crowds, and wear a mask EVERYWHERE and at all times in public.
I decided to do a private antibody test as a study I took part in notified me that my antibodies were negative. I bought my test but as my circulation is poor I asked my GP if they could do bloods at my next monitoring & he agreed. In the meantime we booked a few days away in UK but I managed to catch Covid even though doubly vaccinated. It’s bern a tough few weeks but slowly starting to improve. My husband also doubly vaccinated caught it from me I guess as he started with symptoms a few days later. This just backs up the evidence from the Octave study. So please be careful out there everyone x
I'm arranging own antibody test now, indeed to get out a bit more, my rheumatologist advised me to 'normalise'. I'm on on prednisolone, toficitinib and leflunomide and feel knowing whether I have antibodies or not will help me make more informed decisions.
Wow taji, well done you, very proactive, I will certainly ask the question & I am certainly going to pursue with antibodies test.. great post, thank you for sharing....
I think you are right that we should be making our concerns heard.
The Delta variant is more infectious and leads to more hospitalisations, and yet the Government in England at least has removed even making mask wearing mandatory on public transport.
Covid is more infectious, more severe, and more widespread at the moment and yet many of us do not know if we are effectively vaccinated, if at all. Those in charge do not seem to be taking responsibility.
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Theresa May 
NRAS Statement on Disability Benefits
Calling all RA sufferers in East Midlands/Derbyshire area
Clinically vulnerable - c'est moi! I think. 
