Covid antibodies.

[yogabonnie]

Please say if you have had an antibody test after a Covid Vaccine and if you have antibodies or not and the dose of steroids (or what) you take and for how long. THANKS

[Kendrew]

Hi yogabonnie. I did an antibody test last week. I'm part of a lifelong study of all the children born in the UK in the first week of March 1958. The study is the National Child Development Study, and as part of the most recent phase, those of us still taking part were asked to do an antibody test. I'm still awaiting the results and may take a week or so, but I will let you know when I've received them. I'd had the first of the vaccinations about 8wks previously.

[Poshdog]

Hello yogabonnie, had private antibody test and it was positive for antibodies. Came back saying levels show I had either had Covid or immunisation but as possibly immunosuppressed to treat with caution. I am on 4mgs prednisolone for last year, started on 15mgs 4 years ago. Hope this helps. Had 2 jabs astrazeneca, test 8 weeks after 2nd. Will still be very careful but pleased that some protection is there.

[CarolF1312]

Hi yogaBonnie,I had an antibodies test last week as part of UK Biobank study. I've had my first Pfizer vaccine as far as I know I have not had Covid.

The result was Negative.

I was on 4.5mg on Pred at the time of the test.

[Nightingales in reply to CarolF1312]

Hi Carol. This is disturbing as I was on 30 mg when I had mine. Did they tell you what you can do? Such as a booster shot.

[Highlandtiger in reply to Nightingales]

It’s actually not disturbing as Biobank explain clearly that having a negative result does NOT mean that the vaccine isn’t working. I am also part of the Biobank study. My test was also negative. It was done 3 weeks after first dose of AZ. I’m on 5mg.

[Nightingales in reply to Highlandtiger]

Thank you Highlandtiger. Love your name . That’s reassuring. We just need to be patient and wait for the studies. What’s one more year sheltering 🤣🤣

[Highlandtiger in reply to Nightingales]

I know - it's very frustrating! The Biobank study is quite interesting. You can find out about it online. I think they recruited around half a million people in the UK between 2006 and 2010 and have been studying us ever since. I really can't remember why I was asked to sign up but I do remember having to go along to a big centre with lots of other people to get all sorts of tests and measurements done at the start. Sometimes they ask about diet (I've filled in a lot of food diaries over the years), sometimes about other things. What they say they are actually looking for in these antibody tests is really to see if people have had Covid not to see if the vaccine has worked. They make it clear that if you have had a positive test you shouldn't assume you are immune and equally if you have a negative test it doesn't mean that your vaccine hasn't worked. They strongly advise not to change your behaviour on the basis of these tests, whether the result was positive or negative. It is good to know that there are a number of studies going on. I was also asked to do an antibody test for the Covidence study and a PCR test for the Zoe study this year (all tests were negative). I hope that my contribution to these studies, however tiny in the whole scheme of things, might assist the scientists in the long term to get this virus under control. We can hope anyway!

[PMRpro Ambassador in reply to Nightingales]

They don't yet KNOW what could be done - as it isn't yet clear what effect pred has and everyone is different anyway. There will be booster shots because of the mutations but that may not change either. But until they have the figures and analyse them they can't know.

So what we do is behave as if we hadn't had the shots- space, face and wash. Keep away from people when out, avoid crowds - the lockdown was the main reason the numbers are falling yet, once everyone in the UK is vaccinated it will be de safer for us too but the mutations add another dimension anyway as they may not be covered by the current vaccines.

[Nightingales in reply to PMRpro]

Thank you. I am extremely careful. It’s just a bit disappointing.

[PMRpro Ambassador in reply to Nightingales]

I know - they built it up so much as if everything was fixed in stone. And it never is in medicine and science.

[Lochy]

I also did an antibody test under the UK Biobank study. It was about 4 weeks after first Astra Zeneca vaccine dose. Result was negative. Was on 8mg of steroids at the time. Six years since diagnosis.

[Hidden in reply to Lochy]

Oh goodness, six years since diagnosis...that fills me with dread. Currently I'm using the Dead Slow and Stop method and almost every day on 8mg with one day each week on 9mg. I'm praying I manage to get lower without any probs. I was diagnosed in December 2019. Started on 15 mg which was amazing as the pain went immediately. Then once down to 8mg GCA kicked in, so up to 40mg where I've been reducing ever since. How many flares have you had in your six year period ?

Anne

[Lochy in reply to Hidden]

First official flare was after first few months trying to follow GP taper. Those were the days when I believed it would all be over in 2 years........🙄 no such luck. I’ve had lots of ups and downs along the way. Steroid injection in right shoulder in just six months (think they just wanted rid of me!!) several steroid injections in right knee as it has swollen and become very painful on at least three separate occasions. I’d say they’ve been my official flares as they’ve been so debilitating. I continually struggle to find my optimum steroid dose and have been between 10 and 8 for past year. Various other drugs introduced then given up. Struggle to feel like I’m in control or pain free even when tapering very slowly. Trying 0.5mg a month/six weeks. Feel as if my body is inflamed but can’t pin point what’s causing it. Tried dietary changes and take various supplements. Sadly there’s not a general specialist doctor to look at the whole picture! Think that is what I need.

Was 56 at diagnosis and I often wonder if those of us at the younger end of the spectrum take longer to heal out if we have a different kind of PMR.

Another sunny day so off to enjoy my garden.

[PMRpro Ambassador in reply to Lochy]

" I often wonder if those of us at the younger end of the spectrum take longer to heal out if we have a different kind of PMR"

Oh yes - I think so. And the title of a presentation at a meeting this week suggests there are medics who think the same.

[Lochy in reply to PMRpro]

Oh that’s interesting! Do you have a link to any further info?

I feel I got put very firmly in the polymyalgia box in the beginning and have been stuck ever since. Once there it’s hard to persuade anyone to reconsider.

[PMRpro Ambassador in reply to Lochy]

Not really - it was a webinar science meeting I was invited to but didn't manage, I just saw the titles of the talks. But it is something I have said for the last 10 years: polymyagia isn't just one illness, it is a whole spectrum within another spectrum of GCA, LVV and PMR. The one common denominator is that they are pred-responsive. If you don't respond well and fairly speedily initially to enough pred - and it isn't just 15mg as so many have thought, the most recent guidelines have said up to 25, even 30mg exceptionally - then there needs to be some rethink about the label you are awarded. That is slowly being acknowledged by the Keele group and their retrospective studies and I have seen other work admitting PMR lasts longer and that there are varying responses to pred that suggest different forms of whatever it is. and one (at least) illness that doesn't fit. Even Prof Dasgupta says he leaves patients on low doses for a long time - I think it is a tacit admission PMR isn't gone in 2 years. That is at least an improvement at the end - now we need the improvement at the diagnosis end!

[Rugger]

I did an antibody test for UK Biobank 2 months after my first AZ vaccination and it was positive.

I've been on 5mg of prednisolone for the past 5 months, but on pred for almost 5 years since PMR was diagnosed. (Cumulative dose to date 12700mg!) I'm also on Tocilizumab for GCA-LVV - for the past year.

[Aeronwen]

Hi yogabonnie - I had an antibody test as part of the ONS (Office for National Statistics) study in the UK. I have been on pred for almost 4 years but now on a very low dose (1.5 mg). The test was 8 days after I had the first AstraZeneca vaccine and it was positive for antibodies. I was delighted but my husband’s test was negative and he doesn’t have any health conditions/medications.

[Charlie1boy]

Yes, no and a half mg.Paddy

[HanaleiBa]

I did the Testing for All website Roche antibody test. Positive, though low. I’m on 29mg MTX and RoActemra twice a month.

[Jackie2]

Hi I’ve been on Hydroxycarbamide for ET for 5 years and more recently Prednisone 5mg for Giant Cell artiritis. Diagnosed with Giant Cell 2 and half years ago and was prescribed 60mg for far too long now on 5 mg for past 9 months. I had Pfizer jabs Dec and January and NHS Antibody test 2 weeks ago. It came back Negative I understand the Antibody test can only tell us if we’ve had Covid not if we’ve got Antibodies . I believe we a need a T Cell test to tell us if we’ve antibodies but my Gp won’t even discuss this. I see my Haematologist in May so will ask for advice and clarification. Keep safe and well everyone xx

[PMRpro Ambassador in reply to Jackie2]

By definition, the antibody test shows if you have certain antibodies, depending on which test it is. You are likely to have developed some antibodies if you have HAD Covid, but you should also develop antibodies in response to the vaccine. However, the antibody tests available commercially are not as accurate as those the labs use.

The antiGEN tests that can be ordered free online can only show if you currently have the virus and also only if you have enough present to register. You can be negative today and postive in 2 days time, it is a snapshot, not a film.

[yogabonnie]

Please let us know what you Hematologist says in May!!! thanks.

[PMRpro Ambassador]

No, it isn't just politics. It's science and medicine.

How serious it is isn't entirely clear yet - but the mutations almost always give the virus an advantage and when the advantage means it spreads more easily it will increase the numbers of cases when people are complacent, as they increasingly are. When the numbers of cases increase, there is more likelihood of more mutations appearing and eventually there will be a mutation that gives massive advantages to that version. If it also becomes more deadly in terms of the illness it causes and/or is sufficiently different from the versions used to develop the vaccine then in some ways it becomes a new illness and we aren't protected against it by the vaccine and can become ill, possibly seriously. And THEN we could be back where were were a year ago with a new infection and no protection against it. It could even work differently - not needing ventilators/oxygen to save lives but kidney dialysis or other organ support. Or much longer lasting or severe Long Covid that requires more medical support.

It won't be as bad this time in that we now know how to develop vaccines quickly - but that takes a few months and then manufacture must be ramped up. That requires more raw materials. But it remains true that none of us is safe until all of us are safe - and that means the rate of infection must be reduced to a very low level before things should be allowed to get back to pre-Covid freedoms. If "having fun" or "having a holiday" is put above "keeping safe", all the freedom will come at a risk.

[PMRpro Ambassador]

It is the same virus, not a different one. YET.

theconversation.com/whats-t...

seems a fairly clear and relatively simple explanation.

Think of it like houses being built on a housing estate: the basic structure may be the same but if you put in a different front door it makes it look different but not that different - unless you told someone you lived in the house with the red door and didn't know it is now green so they got confused. But if you told them the address - that's enough information to idenitfy the right house.

The vaccines recognise (say) a specific design of front door - slight changes in the windows don't stop them latching on to the virus by the door. However, if you block up the door and put a new one somewhere else, that is like the bit the vaccine needs disappearing and the vaccine can't work as effectively.

That is the sort of thing that happens when a virus mutates. Some mutations can be enough to kill the virus off as it is damaged, some are the equivalent of new curtains, or putting a garage on the side but not in front of the front door. But building a full width conservatory in front of the door takes away a key identification item, If the vaccine had several mutations that changes the spike to become very different the vaccine may not recognise it and the virus gets on with multiplying.

If there are enough changes, it may be enough to make a new strain - like there are lots of strains of pneumonia bugs and you need different vaccines to deal with them. And sometimes it may be resistant to the drugs that used to work well. Then you are in trouble.