No Covid antibodies after vaccination

Rosiepup

Hello, I have rheumatoid arthritis and am on methotrexate 25mg per week. I had my first vaccination jab (Astra Zeneca) over 3 weeks ago at the beginning of March. I am in the Biobank study group and I was offered a blood test to check for Covid antibodies. I did my test yesterday and it was negative for antibodies. I've read the responses to the question below from someone else on the same subject and I am very worried that this means the vaccine hasn't worked and I'm not protected against covid, particularly with lockdown easing and infection rates expected to increase. I have been searching this evening trying to find some guidance about this on the NHS website etc and there doesn't seem to be any. So far as I know I won't be offered another antibody test by Biobank so what should I do? Just assume I am not protected? I live on my own and have been very isolated for the last year and the thought of having to carry on like this when everyone else is able to start meeting up etc is very hard. Can anyone give me some advice on this? Thanks.

Ellen

Hello @Rosiepup

I just wanted to quickly welcome you to the Online Community while you wait for a response from our Helpline Team.

Please do have a look on the forum you are not alone.

Best wishes

Ellen

helpline_team

Hi @Rosiepup  

Thank you for posting on the helpline forum. I’m pleased to hear you have had your first COVID vaccination, but I’m sorry you are worried that your negative antibody test means that the vaccine hasn't worked.

The uncertainty around the virus and the effectiveness of the vaccinations is particularly challenging for people with autoimmune conditions and those on immunosuppressant medications. For now, we can only empathise with your frustrations around the easing of lockdown and the possibility of increased infection rates.

Based on the current available evidence, some people who are taking drugs that suppress the immune system may be given advice to continue avoiding exposure to COVID-19 after they have had the vaccination. This is because their medications could mean their immune system doesn't respond as strongly to the vaccine as people who don't take these drugs.

It is important to remember that no vaccine offers 100% protection. Sometimes this is because the body doesn’t produce antibodies as well as expected in response to the vaccine and sometimes this is because, although the body produces antibodies as expected, the protective antibody level in the blood falls over time. That’s why everyone in the UK should follow government advice on reducing the spread of COVID-19, even after they have had the vaccine.

Thanks to people like you, and the data from trials like the one you are involved in, the scientists are learning more about the risk factors for COVID-19 and how to manage the outbreak to prevent or treat COVID-19. A new UK study called the OCTAVE study is currently investigating the response to the new COVID-19 vaccines in people whose immune systems make them more vulnerable to COVID-19 and other infections. This will help ensure that those more at risk from infection receive the best protection possible. We expect that some early results from the Octave study will be available over the next two to four months. You can read more about it below.

I have also provided a link to our COVID vaccine information pages on our website. Here we share the latest evidence-based information with our community, so please do keep checking for updates there.

In the meantime, do consider calling us on our freephone helpline: 0800 5200 520. We are here to support you through this.

I hope this is helpful.

Best wishes

Mags

Helpline Team

https://www.versusarthritis.org/covid-19-updates/vaccines-for-covid-19-your-questions-answered/

https://www.imperial.ac.uk/news/216393/covid-19-vaccine-response-patients-with-impaired/

Rosiepup

Hi Mags, thank you for taking the trouble to reply so thoroughly. The Octave study sounds interesting, it's good to know that this issue is being investigated. Unfortunately I have found it quite depressing to find out that the vaccine may not have worked. I have been so socially isolated over the last year , there have been some weeks when I haven't seen or spoken to a single person all week and I don't know how I will manage if I have to carry on like this indefinitely. Normally I enjoy going to the theatre and cinema, I was looking forward to being able to do these things again later on in the year and it feels like that hope of a bit of normality has been taken away. I've found some sites offering private covid antibody tests, I think if I'm not offered another test by Biobank, I'll get a private test after I've had the second vaccination and see what that shows.

Thanks again for replying.

helpline_team

Hi @Rosiepup  

You're so welcome. These are tough time! Please remember that the online community is here for you. I know we’re no substitute for the social interaction and normality you have missed out on over the last year, or for those trips to the cinema and theatre that you are so looking forward to. We’re hoping the Octave study and other data sets will provide lead to real changes to the ways the health of vulnerable groups is managed in future, so that you can enjoy life again.

You may wish to talk through your thoughts about the antibody tests with your GP or Rheumatology team. At this stage, I think they’re likely to say that we don’t know enough yet, but it may help you to discuss your decisions around your individual risk with them.

The honesty with which you and others share your experiences of the pandemic has been, and continues to be, crucial in shaping our push for real change. Versus Arthritis is working closely with the British Society of Rheumatologists (BSR), the Association of Research Managers and Administrators (ARMA) and the Joint Committee on Vaccination and Immunisation (JCVI) to lead the way and develop our COVID-19 resources to give you information and support you need during these uncertain times.

Please reach out to us via the helpline Rosiepup. We’re here to offer a listening ear and can offer tailored support. I have pasted a few more links here that may be useful, but there are others we can suggest. Some of groups and services are running on-line at the moment and can be a good substitute for face to face activities until the normality you are hoping for returns.

https://www.versusarthritis.org/news/2021/march-2021/a-year-of-covid-19-supporting-each-other/

https://www.versusarthritis.org/news/2020/march/arthritis-and-coronavirus-looking-after-your-emotional-wellbeing/

https://www.versusarthritis.org/in-your-area/

I do hope you will call us and I wish you all the best,

Mags

Helpline Team

MMacG15

I do sympathise so much with this. I have AS and other conditions and through Biobank have been sh0wn to have no antibodies. This terrifies me and, because my problem is not officially recognised yet, I am still expected to go out and about as before. Like Rosieup, I feel abandoned. I have tried so hard to keep up with friends and family but this is not really a substitute for having a life. My daughter, being a hospital doctor, has to avoid contact whenever there is a spike in infections and, in Scotland, that is most of the time. Summer has been quite good since I ordered plants etc online and spent most of the time working in the garden but I do not look forward to a second long, boring and lonely winter. I frequently give myself a good talking to, which sometimes works but, other times not so great. Maybe we should start a telephone moaning group or something. Maybe just a "good ideas" site - when bored and lonely watch an old episode of Friends and eat chocolate, type thing. Good luck to all who have these problems. Although we are alone there are many of us in the same boat.

Ellen

Apologies @Rosiepup for the hijack just wanted to welcome @MMacG15 to the Online Community.

It's lovely that your first post is supporting someone.

We do have a couple of things going on online to distract us and maybe make us feel a little better:

https://community.versusarthritis.org/discussion/49318/the-triumphs-thread

and

https://community.versusarthritis.org/discussion/52548/levity

Also have you seen this thread?

https://community.versusarthritis.org/discussion/54790/octave-study-results

You are right many of us are individually on our own by not need to feel it here.

Do please take a look around the Online Community and join in wherever you wish.

Best wishes

Ellen.

helpline_team

Hi @MMacG15

Thanks for your post to the Helpline. I do appreciate how difficult it is dealing with the gaps in the crucial information regarding vaccination and immunocompromised people.

In this fairly recent article some of the issues are drawn out and there are early findings which are explored.

Studying the immune response to COVID-19 vaccines: OCTAVE study (versusarthritis.org)

One of the difficulties is still having to go away without all of the questions being fully answered.

During the pandemic there have been many moments where we have been handling uncertainty and some fears. Understanding of practical measures to protect ourselves and one another has improved. Face masks, hygiene, social distancing can and do provide reassurance. It is of course frustrating that not everyone will understand the needs of people who are feeling vulnerable. Online contact is still here and is being of real help also.

If you'd like a chat about how you are feeling, you'd be most welcome to speak to us here at the Helpline on 0800 5200 520.

All the best

Guy - Helpline team