Lupus & Coronavirus (COVID-19) - UPDATED (01/04/2021)

[Paul_Howard]

We have updated our information and guidance about lupus & COVID-19 lupusuk.org.uk/coronavirus/

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

These updates cover:

1. Shielding Guidance has been paused in England and Wales from today.

2. Early findings indicate people with weakened immune systems have lower levels of protection from the vaccines.

3. People aged 16 and over who live with someone who has a weakened immune system are now prioritised for vaccination as part of Group 6.

We have a range of other resources worth checking out too;

Returning to work:

lupusuk.org.uk/covid19-work/

Looking after your well-being:

lupusuk.org.uk/isolation-we...

Available support:

lupusuk.org.uk/coronavirus-...

LUPUS UK COVID-19 Emergency Assistance Fund:

lupusuk.org.uk/covid19-assi...

[loopy-lou]

Thank you Paul. I have just read the updates

[TEDDYM]

Thank you Paul for the information. Happy Easter to you and the team!!

[Paul_Howard Partner LUPUS UK in reply to TEDDYM]

Thanks TEDDYM . Happy Easter to you too.

[Cathyan]

Thank you Paul. I didn’t realise family members of the clinically extremely vulnerable were now eligible for vaccination. Can anyone find where it says how to go about getting the vaccine for these? My uni student children are home and I would like them to be vaccinated.

[Paul_Howard Partner LUPUS UK in reply to Cathyan]

Unfortunately the NHS websites haven't yet been updated to reflect this recommendation. I would advise people to initially try booking by calling 119, and if they are unable on there to try their GP. If we hear of people in this group having difficulty booking, then we can raise this with officials.

[Cathyan in reply to Paul_Howard]

Thanks Paul. My daughter rang her student health GP surgery an hour ago and they gave her a code which enabled her to make an appointment for Thursday without problem. Thank you very much for alerting us.

[Paul_Howard Partner LUPUS UK in reply to Cathyan]

That's great to hear. Thanks for sharing their experience with me

[LupusNewbie]

Thank you. I am uncertain though whether this includes 16 year olds? My son is 16 and I would like him to have the vaccination but the article keeps saying "over 16." He is 16 years and 4 months, does that mean he is 4 months over 16 or do they mean 17 years and upwards?

[Paul_Howard Partner LUPUS UK in reply to LupusNewbie]

Hi LupusNewbie ,

If your son lives in your household and you are on immunosuppressant medications, then he should be eligible for vaccination as part of priority group 6. As your son is 16, he will currently only be eligible for the Pfizer/BioNTech vaccine as the Oxford/AstraZeneca vaccine is currently only licensed for 18+.

[BonnyB]

Thank you very much. Happy Easter.

[Joni2011]

Hi Paul. Sorry if this has been asked before, but the letter that this links to seems to be about people with 'severe immunosuppression'. Where do we fall on the severity scale? Does 'severe' refer to people with cancer, or people like me on only methotrexate?

[Paul_Howard Partner LUPUS UK in reply to Joni2011]

Whilst the initial letter is about 'severe' immunosuppression, the JCVI recommendation is for anyone on immunosuppression medication. This should include methotrexate.

[Joni2011 in reply to Paul_Howard]

Thanks for the quick response!

[Cathyan]

Paul I just want to say that my son rang 119 Friday and was told that the offer of jabs for adults living with the clinically extremely vulnerable has been withdrawn because so many people had been abusing it and lying about their circumstances. They acknowledged it had existed. So I don't know what is happening! My student daughter got hers through her GP surgery ok (she travelled back to student health just for the day Thursday and was given a Pfizer jab). My son's student health GP said they weren't sure so try 119 or try through my GP. Any updates on whether it truly has been withdrawn?

[Paul_Howard Partner LUPUS UK in reply to Cathyan]

Hi Cathyan . No, this is the first I have heard of any suggestion that there has been any u-turn on this prioritisation recommendation. I've just done a quick online search and can find no mention of a change. The most recent communication is this letter sent to all GPs by the Medical Director for Primary Care - england.nhs.uk/coronavirus/...

[Cathyan in reply to Paul_Howard]

Paul this is so helpful. Thank you very much, I will pass this on to my son.

[KayHimm]

Paul -

The US is urging family members of people on immunosuppressants to get vaccinated as soon as possible too. One thing a friend of mine brought up - he is not an immunologist- is that the Johns Hopkins study was done on transplant patients. He seems to think those patients are on a much higher dose of and possibly many multiple immunosuppressants, which means the study isn’t generalized.

That may mean lupus patients don’t have such a blunted response to the vaccine.

Have the experts commented on these studies and where they think lupus patients will fall? Might have to wait for studies to conclude to know.

Kay

[Paul_Howard Partner LUPUS UK in reply to KayHimm]

Hi KayHimm . We've not really had a comment about how these early findings may translate to people with lupus on immunosuppressants at this time. There are UK studies also looking at the vaccine response in this patient group, so in time we should have more information and guidance.

[KayHimm in reply to Paul_Howard]

Thanks, Paul