Lupus and COVID-19 Vaccination - UPDATED 03/09/20... - LUPUS UK

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Lupus and COVID-19 Vaccination - UPDATED 03/09/2021 - Third Doses

Paul_Howard profile image
Paul_HowardAdministrator

Following new JCVI recommendations announced earlier this week, we have updated our information and guidance article about lupus and COVID-19 vaccination.

lupusuk.org.uk/covid19-vacc...

The JCVI are recommending that people with "severe immunosuppression" should be invited for a third COVID-19 vaccine dose to achieve similar levels of protection compared to the broader population.

The British Society for Rheumatology has suggested that nearly all rheumatology patients (aside from those solely on hydroxychloroquine or sulfasalazine), should receive a third dose.

23 Replies

Thanks Paul

That’s really good news. Thank you. I think I’m in a slim minority but I’m still struggling to get support because I also had a bad lupus flare from the vaccine and can’t get the second. I’d appreciate if LUPUS UK would continue advocating for prophylactic monoclonal antibodies for people like me.

Thank you for everything you do.

Paul_Howard profile image
Paul_HowardAdministrator in reply to ShannonB

Hi ShannonB,

Immunodeficiency UK have been doing excellent work to campaign for access to antibody therapy as a prophylactic for those who cannot get protection from the vaccines. immunodeficiencyuk.org/what...

We are supporting their efforts, especially as the MHRA approved its use for preventing and treating COVID-19 infection.

ShannonB profile image
ShannonB in reply to Paul_Howard

Yes I've been sharing their posts and agree they are really doing good work. Thank you for supporting and pushing for this as well.

Thanks Paul. Glad it's been confirmed. Spoke to my rheumatologist at a routine appointment this morning and she's authorised it for me. No word yet on whether Methotrexate will need delaying for 1-2 weeks as the Americans are doing. She's checking the guidelines.

Paul_Howard profile image
Paul_HowardAdministrator in reply to Cathyan

Hi Cathyan,

We have been pushing the British Society for Rheumatology to review and clarify their guidance about whether immunosuppression should be paused (where possible) for this dose. The JCVI Green Book suggests that a "treatment holiday" is recommended, but the BSR is claiming there is insufficient evidence to guide this. I hope we'll get another response early next week.

Cathyan profile image
Cathyan in reply to Paul_Howard

Thanks Paul that’s very helpful.

Paul can I just say this guidance article you/Lupus UK have provided is beautifully clear, much easier to follow than the JCVI guidance here gov.uk/government/publicati... Thank you!

Paul_Howard profile image
Paul_HowardAdministrator in reply to Cathyan

That's very kind of you. I worked hard to try and reduce the jargon and anything that was surplus to requirements for the vast majority with lupus. I hope that most people can understand it clearly.

My antibody test came back negative yet I am on Hydrochloroquinine..so I question that decision.

Paul_Howard profile image
Paul_HowardAdministrator in reply to ANDHOLLER

Hi ANDHOLLER. That is interesting. May I ask why you had the antibody test done? Do you have a weakened immune system as a symptom of your lupus?

I had it done as part of a research programme I am a participant in. I would say it is weakened as in I catch colds etc easily but then the immune system goes into overdrive and battles for a couple of weeks. But no one has said " weakened immune system" as such. Interesting that I have no antibodies though and given the guidance on the booster I am in that Limbo world. My family is riddled with auto immune disease manifesting in different ways.

Clear text
Paul_Howard profile image
Paul_HowardAdministrator in reply to ANDHOLLER

Thank you for taking part in a research programme. Have you discussed the results with your doctor? Have they recommended anything like trying a different vaccine or having another dose?

Hi,

There is still a worry/concern, as published in the leaflet:

“…How do I know the third dose will offer additional protection?

Based on experience with other vaccines, it is expected that some people who are immunosuppressed may not generate a good immune response regardless of the number of vaccine doses they have. However, data is not currently available to reliably identify who might, or might not, benefit from a third dose of a COVID-19 vaccine. Findings from the OCTAVE study indicated that people treated with rituximab may be at particular risk of not generating a measurable immune response.

JCVI recognises that many people who are immunosuppressed remain concerned regarding their risk of COVID-19 despite having received 2 doses of the vaccine as currently advised.

The potential for additional protection from a third dose is unknown at an individual level.

Antibody levels may be measured, but we do not have a clear understanding of how this relates to protection against severe disease.

Until more data is available, the provision of a third dose to people who are immunosuppressed will draw on the assumption that a third dose is unlikely to confer significant harms or disadvantages, but may offer the possibility of benefit. ...”

🤔

Cathyan profile image
Cathyan in reply to Betty321

Speaking to my consultant this morning she said she hadn't quite worked out what to do about the timings of the 3rd dose and rituximab yet. I think it's something to be worked out individually with your doctor(s) to get the most theoretical benefit. You can see what the Americans recommend timings wise here rheumatology.org/Portals/0/...

Cathyan profile image
Cathyan in reply to Cathyan

I should say she seemed excited and very positive about this 3rd dose being given and was very happy to talk about it. I hope everyone has an equally positive experience with their rheumatologist!

Paul_Howard profile image
Paul_HowardAdministrator in reply to Betty321

This is certainly a concern. Unfortunately, there are small numbers of people who will not get much protection from vaccines due to a severely compromised immune system.

The BSR has quite detailed guidance about timing vaccine doses around rituximab infusions - rheumatology.org.uk/practic...

Due to the long-lasting nature of B-cell depletion from rituximab though, the studies so far indicate that it will be a problem for a lot of people. Antibody treatment may be a necessary alternative to provide protection - immunodeficiencyuk.org/what...

Thank you Paul.

Thanks Paul x

Many thanks for the updated information/guidelines Paul. They answer a lot of questions my husband (on heart medication) and I with SLE had. It is very clear and easy to access the info we needed. Thank you so much.

Thanks Paul for your efforts. In May 2020 my wife was taking baricitinib (biologic) for RA and it was thought then that this had over- suppressed her immune system to the point that she had acquired 3 infections pleurisy, candidiasis, and gastritis, resulting in 6 weeks in hospital. She was taken off immunosuppressants to allow the antibiotics to work. She was discharged with no diagnosis and a very gloomy prognosis of "you should be making out a DNR (Do Not Resuscitate) form. In October 2020 she was eventually diagnosed with Lupus SLE and treated with hydroxychloroquine. The JCVI report keeps stating "excluding hydroxychloroquine" with no explanation as to why.

Are we to assume that patients currently taking hydroxy do not have a "suppressed immune system" and therefore must have a fully functioning immune system?

Is there any test to reassure us that: A) Her immune system is fully functional. and B) the Covid vaccinations (Oxford/Astra) were effective in producing the necessary antibodies?

I am sure you can appreciate how worrying it is when we have no evidence that the vaccinations have actually worked properly, and whether she could still be CEV to Covid 19 .

Many thanks

Paul_Howard profile image
Paul_HowardAdministrator in reply to BeeManShrop

Hi BeeManShrop,

Unlike many other treatments used in the management of lupus, hydroxychloroquine is not an immunosuppressant (it is instead considered an immunomodulator). Typically, hydroxychloroquine is not associated with a reduced efficacy of vaccines. Many other treatments used for lupus, such as corticosteroids, immunosuppressant DMARDs and biologic therapies can significantly suppress the immune system and it has been shown in trials that people on these treatments are likely to have a lower level of protection against COVID-19 from the vaccines.

There are some cases where someone with lupus who is just taking hydroxychloroquine may have a weakened immune response. Lupus can sometimes cause neutropenia (a lowering of a certain type of white blood cells). White blood cell count (WBC) will usually be part of routine monitoring for someone with lupus and, if it is of concern, I expect your wife's doctor will have mentioned it to her. You could ask about this at her next appointment?

It is possible to have a COVID-19 antibody test to get an impression of probable immune response. If you are concerned, your wife could ask her doctor about this, but I expect it is only be offered to those with a recognised weakened immune system. The tests can also be done privately. The thing to be aware of with these tests is that they are not conclusive. They do not consider T-cell response, which is an important part of fighting infections. Therefore the level of circulating antibodies may not accurately portray the likelihood of someone suffering from COVID-19 infection.

Many thanks Paul for your comprehensive reply.

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