Effectiveness of vaccination for people on steroids - PMRGCAuk

PMRGCAuk

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Effectiveness of vaccination for people on steroids

Matma profile image
17 Replies

Okay so I’m sure we are all wondering and no professional has yet been able to give me a semi confident answer. Has anybody had an anti bodies test to see if the vaccine has given them any protection against the dreaded COVID-19?

It’s getting more worrying now with the latest government plans

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Matma profile image
Matma
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17 Replies
PMRpro profile image
PMRproAmbassador

There have been several discussions on the forum where people have reported having antibody levels - and some with none. But even if you have a test done and do have antibodies, no-one can tell you whether that equals protection or not. And not having antibodies may not necessarily mean that you have no protection since that is only one aspect of immunity, the t-cells and b-cells provide a memory part of immunity that can't easily be measured as far as I know.

I'm assuming I am not immune and will continue to distance and wear a mask as I have had to do previously.

Hopingsail profile image
Hopingsail in reply toPMRpro

I asked my GP about a test some weeks ago - wanting to know not only for myself but for my wife in a carehome etc. He responded he couldn't get me one and tried to explain the difficulties along the lines you have done regarding the t and b cells. Our 'conversation' was via E-Consult (which I find very annoying) and didn't get me very far as tbh I don't really understand all the finer medical details.However, one would think that the Pharma companies carrying out the human trials on their products must have solid grounds for saying as they do: "Our vaccine is 80% effective". Presumably there must be some test or tests, otherwise how can they make that claim? Given the current climate, I am trying hard not to be suspicious that there is a test or tests but they are expensive and so this is being "hidden". There must be hundreds of thousands of us on steroids and other similar drugs for lupus, cancer etc, plus I saw an estimate that 1 million people in the UK use non-prescribed steroids for body-building etc. So, there would be a substantial cost to test us all.

123-go profile image
123-go in reply toHopingsail

Unfortunately, trials for efficacy of Covid vaccines were carried out only on people with healthy immune systems. There are trials, apparently, currently being carried out for 'people like us' but the results won't be known for some time- something like six months to a year or more. Personally, I'll only be meeting friends outside and not large groups, wearing a mask if I go into shops, and continuing social distancing.

PMRpro profile image
PMRproAmbassador in reply toHopingsail

The figures they quote for efficacy are based on the clinical trials.

Basically, there are 2 cohorts, one who all had the vaccine, one who all had placebo. They monitor them until a pre-determined number of the placebo group have developed the illness being vaccinated against and it is compared with the numbers in the vaccine group. If 100 people in the placebo group catch Covid and only 10 in the vaccine group - that is 90% effective. Bear in mind this is in a group of healthy screened persons who have to meet certain criteria and the whole thing is done under ideal conditions. The results in real world conditions are almost never as good but not that much lower. These are the figures there were the disputes over that were discussed in the media - most loudly about the Oxford vaccine. the full documentation, collected under double blinded conditions (neither the staff nor patients know who got vaccine or placebo, the documentation is kept separate to ensure secrecy) and then submitted for assessment by the regulatory authorities.

For most potential vaccines the bar is set at 50-60% effectiveness for it to be progressed for approval. That the Covid vaccines achieved over 90% is amazing and unheard of historically. There is ongoing monitoring - called by some people Phase 4 trials, or post-marketing trials, which are done for all new medications. Anyone who develops adverse effects or catches Covid should report that fact via the Yellow Card scheme in the UK, the FDA reporting site in the USA. All countries have their own version. The ZOE study is adding another layer of such monitoring.

The tests for t and b cells are very complex immunology and only available in specialised centres - and they are, as you say, not cheap. There is neither the money nor the facilities to carry them out in large volumes. They had enough trouble setting up large scale antigen testing in the UK. In general it is assumed that if you develop antibodies then you will develop similar levels of t/b cell immunity but that is probably still being assessed.

I probably sound judgemental, I consider that anyone on anabolic steroids for bodybuilding deserves no sympathy since it is a risky thing to do and legally somewhat doubtful but I don't think they affect the immune system, certainly not in the same way, they are totally different from corticosteroids. There have already been studies published about the immunity developed in the immunosuppressed patients - I have written about some on this forum. And it is on that basis I have warned that we need to continue to be careful - and when everyone has the option not to wear a mask, we must be even more careful or take the risk. That is a personal choice.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toHopingsail

If you join this study you will be asked to take antibody tests - free! qmul.ac.uk/covidence/

HeronNS profile image
HeronNS

I'm going to continue to be masked in public places, avoid crowds and limit my close personal contacts for the foreseeable future. I think there will come a time when the immune compromised will be offered a booster, but ethically that really should not be until the global level of vaccination is much much higher. Too many people still have no access to a first dose yet.

SheffieldJane profile image
SheffieldJane

Our GP practice nurse told me that I would be offered a booster vaccine in the Autumn because I have autoimmune diseases suppressed by Pred and Tocilizumab. I haven’t heard anything from any other source.

Bridge31 profile image
Bridge31

320U/ml which until further research is fairly meaningless

Rosshigh profile image
Rosshigh

I paid for an antibody test and got a result of positive 2500 u/mg which seems the highest you can get. I don't know how long it will last but happy I have shown antibodies at least.

Rosshigh profile image
Rosshigh in reply toRosshigh

Sorry meant u/ml 2500

AliDeJ profile image
AliDeJ

My GP says there is no point having the test. Doctors do not know how to interpret the results. It may look like you have antibodies but this may not translate into protection against the virus.

LBM1953 profile image
LBM1953

The trial that SheffieldJayne refers to says that their (Covidence) antibody tests "..have all gone now..." but that they are "...planning a second wave in the summer of 2021..." whenever that is.

Nightingales profile image
Nightingales

I had the test just for interest and was surprised to find it came back positive. Naively , I thought well some resistance is better than none. My count was 8. Recently I saw this article. It is for RA patients but it gives more info on the numbers. The lowest acceptable to the researchers was 15 so I guess I am not protected at all.

I am feeling that my world has become very small once more when I was beginning to go out again feeling somewhat secure when others were wearing masks in shops and restaurants. As we all know it doesn’t help much if we wear a mask if the person you are interacting with doesn’t.

Also, I wish they would come up with some plan for us. They keep saying a booster “may” be given in September. I don’t have a link but I read that some of the other vaccines work better for us because they affect the T cells. Has anyone heard if they are planning to use those for us?

rheumatology.medicinematter...

PMRpro profile image
PMRproAmbassador in reply toNightingales

For the next round of development:

genengnews.com/news/new-cov...

And this

bmj.com/content/371/bmj.m4838

suggest Pfizer, Moderna and AZ all have some t-cell effect.

Nightingales profile image
Nightingales in reply toPMRpro

Thank you PMRpro. Very interesting. We will just have to be patient and let the scientists do their work. But as you say caution is still the key.

peanutann profile image
peanutann

I had the 2nd vaccine March 4. Six days later developed GCA. Went on steroids in April. Had antibody test June 3rd. It showed zero antibodies.

Linny3 profile image
Linny3

Yes I had an antibody test as I was also worried that the shot may not have worked. Good news is I do have the antibodies. I went to a private lab and paid for it myself. $150.00

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