Please or to access all these features

Autoimmune disease

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Autoimmune and vaccine effectiveness

25 replies

Workinghardeveryday · 03/03/2021 23:05

Not sure if there is another thread so apologies if there is. Has vaccine 3 weeks ago. I understand it’s not as effective as it would be for someone who isn’t auto compromised, but does anyone know how much protection you get?

OP posts:
lazymum99 · 05/03/2021 20:39

There has not been sufficient research n this. But psoriasis website says people on biologics should have the vaccine and still remain careful with distancing etc.

Phym · 14/03/2021 15:32

I guess it varies.
I had an antibody test 5 weeks after my vaccine. I was tested for both covid induced antibodies and vaccine induced antibodies.
My test came back negative for all antibodies.
I am gutted TBH and going to talk to my Rheumatologist about it.
Obviously I have a second dose to come but the research that was done on cancer patients showed that they only responded when they got the second dose within 3 weeks. I had AZ not Pfizer.
www.kcl.ac.uk/news/delaying-second-vaccine-dose-cancer-patients-vulnerable-virus

Workinghardeveryday · 15/03/2021 12:21

No wonder your gutted about it, hopefully the second one will make a difference. How do you even get an antibody test?
I just feel like I am going to be trapped in this house forever and it’s not fair on dp and kids xx

OP posts:
VerityWibbleWobble · 15/03/2021 12:25

Are you in dmards or biologic drugs? It's those that may make the vaccine less effective rather than having autoimmune diseases isn't it?

backaftera2yearbreak · 15/03/2021 12:31

I take immunosuppressants for eczema and just had my first dose. This concerns me too.

Amichelle84 · 15/03/2021 12:37

Where are you getting your information from? I'm immunosuppressed and on biologics and haven't heard its less effective...

VerityWibbleWobble · 15/03/2021 12:47

@Amichelle84

Where are you getting your information from? I'm immunosuppressed and on biologics and haven't heard its less effective...
This is just a random site I picked but I read a lot of Creaky Joints stuff so I know it's reputable.

creakyjoints.org/living-with-arthritis/coronavirus/covid-19-vaccines/mrna-covid-19-vaccine-immunocompromised-medical-organizations/

Workinghardeveryday · 15/03/2021 13:21

I am on biologics and azathioprine. From what I have read they know for sure it isn’t as effective but they won’t know until the end of the year how much it works if anything!!!
Please someone tell me I am wrong ☹️

OP posts:
Phym · 15/03/2021 14:24

My antibody test was part of a research project, I don't know if they are widely available. They won't give me any more information or advice other than it was negative for vaccine induced antibodies. I will have another test in two weeks.
I understood it was only things like methotrexate or biologics that were major immunosuppressants?
I am not on the strongest DMARDS. Sulphasalazine and a very low dose of prednisolone. It's possible the vaccine has worked in some lesser way I hope so.

Amichelle84 · 15/03/2021 17:04

Guessing that means shielding will keep getting extended... :(

lazymum99 · 16/03/2021 09:32

I am on Biologics for psoriasis and I’m worried about not having a good response to the vaccine. I have bought a post vaccine anti body test. I haven’t sent it off yet. It’s been 3 1/2 weeks since my first vaccine. I will do it today and send off. I will report back when get the results. It is supposed to tell me the actual number of antibodies not just positive or negative. It cost £59

windisblowing · 16/03/2021 09:43

brother on immunosuppresants following organ transplant, has been told he may have to have 3 jabs to get a decent antibody result

Workinghardeveryday · 16/03/2021 12:45

@ lazymum99 that’s good to know, I would pay £59 to find out! Yes please let us know when you get the results, fingers crossed for you

@ windisblowing that’s good to know too, didn’t even know you could have 3!!

OP posts:
RandomReader · 16/03/2021 12:49

I'm immunocompromised as I have a Primary Immune Deficiency.

I have issues responding to vaccines, and I am concerned that I won't have responded to my Covid jab. Although we were told that this will work in a different way.

Interesting to note the comments so far.

MarieDelaere · 16/03/2021 13:04

I'm on a biologic, and the hospital told patients to try to time the vaccine so you hadn't had a biologic injection for a week, and then after the vaccine to leave off the biologics for at least ten days (if possible).

Seems like sensible advice.

My conditions are currently well controlled so I was able to completely miss a dose of the biologic, and have the vaccine in the middle of that window. So I had:

Day 1: biologic jab

Day 15: vaccine

Day 29: biologic jab.

I inject myself with the biologic so it was pretty straightforward to organise.

Phym · 16/03/2021 14:02

Antibodies are not the only response, there are also T cells but I don't think they can test for them?
@lazymum99 where was your test from for £59? I might try a comparison.
This is an American site but worth a read.
creakyjoints.org/living-with-arthritis/coronavirus/covid-19-vaccines/recommendations-for-fully-vaccinated-for-immunocompromised/?utm_source=GHLF+COVID-19+Support+Program&utm_campaign=6540dc98ff-real-time_email-57&utm_medium=email&utm_term=0_e0b05b1451-6540dc98ff-233572013

lazymum99 · 16/03/2021 21:51

I got my test from zoomdoc. There are quite a few websites selling them. It is a Roche post vaccination antibody test. I did it this afternoon. Had to get quite a bit of blood out of my finger. Wasn’t easy!!

lazymum99 · 19/03/2021 10:17

Ok. I got the results. I do have antibodies but at the lower end of the spectrum. 5.1 U/ml
Have no idea what that means though. It does have a caveat that people on immunosuppressants should interpret the results with caution. Hopefully there are other things my body is doing to help immunity!

Phym · 19/03/2021 12:32

Thanks for reporting back. Do you know what the spectrum is? Still it shows you've responded, and the second dose will boost that.
I should get another test next week. After that my second jab is due. I will get a zoomdoc test after that to compare.

lazymum99 · 19/03/2021 12:46

The range is 0-2500! Do 5.1 is not brilliant to say the least. I will prob buy another test a month or so after my second jab

Phym · 22/03/2021 18:06

Interesting article here about it.
www.telegraph.co.uk/health-fitness/body/had-covid-jab-antibody-test-low/

lazymum99 · 22/03/2021 18:48

I can’t access the Telegraph without signing up. Can you give us the gist of what it says?

Phym · 22/03/2021 18:56

Ah sorry. Ill copy and paste the whole article.

At Christmas, my teenage daughter gave me the gift of Covid. Our patch of South East London is close to the Kent border, and the new variant virus was rampaging through schools. Fortunately, both she and I had it only relatively mildly – like a nasty cold. In January, when I’d recovered, I volunteered to help with the local vaccine effort, which made me eligible for vaccination.
Friends were terribly jealous of my apparent double Covid-proof status. “Even your antibodies will have antibodies,” said one. Feeling smugly certain that I was bursting with immunity, I didn’t hesitate when I then received a text asking me to donate plasma to the NHS. The idea was that my antibody-rich blood plasma would be infused into people hospitalised with Covid in the hope that this would boost their fight against the disease. I tootled off to a test centre where they took a sample.
The results, a week later, surprised and dismayed me. My antibody level was too low to be useful. They didn’t want me. I felt almost insulted. But more importantly, I wondered if that meant I had not responded to the vaccine. Was it ever going to be safe to hug my mum? Was I even immune to future infection?
My experience comes as a new generation of Covid antibody tests launch onto the market. Costing as little as £50, they look for antibodies that recognise the spike protein on the surface of the coronavirus. While previous tests merely told you if you had any antibodies at all, these new ones reveal the precise levels – or titres. James Monico, co-founder of the non-profit organisation Testing For All, which sells them to consumers, told the New Scientist last week: “A low antibody response means you are more likely to get reinfected and pass it onto someone else.”
So is that true – and are these tests worth having?
Professor George Kassiotis knows a thing or two about viruses. He is head of the laboratory of retroviral immunology at the Francis Crick Institute, London and a professor of retrovirology at Imperial College London. He says that the tests are “effectively meaningless. We cannot equate antibody levels with immunity in people”.
This is because, he says, “antibodies are not the be all and end all of immunity”. For example, “with Covid vaccines we can show that protection kicks in around ten days after the first dose. This is well before we can detect any neutralising antibodies in the majority of vaccinated people.”
And if you, like me, had a mild Covid infection, your antibody levels will be much lower than if you’d had a severe infection or have been vaccinated. Though there is no doubt, says Prof Kassiotis, that vaccination produces a stronger antibody response than infection.
Antibodies are part of a complex chain of events that is triggered when the body is exposed to a virus, he says. “Our immune system has two phases. When we first become infected with the virus, the first line of defence is our ‘innate’ and non-specific immune response, which uses immune cells to slow progress of the virus and even prevent it causing symptoms. This causes the inflammatory symptoms of swelling, pain and fever.”
If this response is insufficient to tackle the virus, back-up is summoned in the form of your body’s adaptive immune system, which creates ‘memory cells’ known as B cells and killer T-cells.
If the virus continues to spread, says Prof Kassiotis, “B cells bind to the virus and make antibodies that are specific to that virus. It can take up to ten days for the body to multiply enough B cells to overwhelm the virus.”
In other words, antibodies are not the only weapon our immune system uses to beat an infection – and are certainly not a reliable measure of a person’s level of protection against Covid, because we’ve no idea what the required level would be.
He says, “Sometimes people with very high antibody levels are vulnerable to infection with a different strain or even the same strain of coronavirus.” And we still don’t know how antibody levels affect the risk of transmitting the virus to other people.
That’s not to say that antibodies are irrelevant. “Generally, you can say that on a population level, if you have antibodies, you are more likely to be protected against Covid-19,” says Kassiotis. “And it does seem that people with high levels of antibodies are better at recognising new variants.” There is also some evidence that levels of antibodies reduce more slowly in people who had high levels to start with.
“But this doesn’t tell us anything about an individual,” says Prof Kassiotis. “While more antibodies is usually better, without a defined cut-off point, above which people are protected, and below which they are at risk, I can’t see the point of testing.”
There are many factors that could affect your antibody levels after infection or vaccination. People with immune deficiency diseases such as HIV won’t make antibodies. Nor will those undergoing certain cancer treatments.
We also know that older people make fewer antibodies when infected with Covid-19, as the ageing immune system is less effective.
A new study published in The Lancet has found that while over 80 per cent of people who had the original strain of the disease were protected from reinfection for at least six months, this fell to just 47 per cent in people over 65. Reinfection, though, is generally rare. Of 11,068 people who tested positive during the first surge, only 72 tested positive again during the second.
However, says Prof Kassiotis, this doesn’t seem to apply with vaccination. “Vaccines seem equally effective in older age groups. It seems that even if vaccinated older people have low antibodies generally, their levels will rapidly increase if they become infected with Covid-19.”
Though antibody tests are undoubtedly an appealing idea as we look to the roadmap to freedom, Prof Kassiotis says they could be dangerous. “If your test shows high antibody levels after infection, you might think you are invincible and take more risks or even decline the offer of vaccination. On the other hand, someone might have low antibody titres after vaccination and worry that they are not protected and that could also be wrong.”
As for me, I was reassured to learn that my failure to donate plasma did not mean I had freakishly low levels. Of everyone invited to donate convalescent plasma, only 10 per cent met the high antibody threshold. These were more likely to be men who had been hospitalised with the disease.
“Protection can exist even if tests can no longer detect antibodies,” says Prof Kassiotis. “The numbers never go down to where they were before our body was introduced to the virus. They remain elevated for our lifetime. We call this ‘immunological memory’.
“If you do get reinfected, it is highly unlikely that the illness will be worse than the first time. Neither will you be totally defenceless – even years after infection or vaccination.”

Tambourina · 22/03/2021 23:34

@Phym Thank you!

lazymum99 · 23/03/2021 17:29

Interesting article but I’m none the wiser about my situation. Except that I probably wasted £59 on the test because the result doesn’t prove anything!

New posts on this thread. Refresh page