Lupus and Coronavirus (COVID-19) - UPDATED 04/06/... - LUPUS UK

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Lupus and Coronavirus (COVID-19) - UPDATED 04/06/2020

Paul_Howard
Paul_HowardAdministrator

Hi everyone,

We've just published an update to our information and guidance about lupus and COVID-19. Please have a careful read of the full article at lupusuk.org.uk/coronavirus/

The main updates this time include;

• Changed shielding guidance (England and Wales only)

• Newly published (early) findings from EULAR about immunosuppressant risk in COVID-19

• Guidance about children returning to school

• Expanded guidance about attending medical appointments

• Changes to guidance about face masks

If anyone is in crisis, please contact us on 01708 731251 or email headoffice@lupusuk.org.uk and we will do our best to assist. Please note; if you have an urgent medical crisis you should contact 999 or 111 as appropriate.

35 Replies
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Thanks for the update

Thanks Paul. Excellent. Best wishes Kevin

Thank you Paul. I take azathioprine and I have hypertension. Which group on the BSR risk stratification guide do I fit in? Highest risk says multiple immunosuppressants plus underlying medical condition and increased risk says one immunosuppressant with no underlying medical condition.

I have been shielding for 11 weeks now having received multiple shielding letters and texts.

Paul_Howard
Paul_HowardAdministrator in reply to Prunes

Hi Prunes,

If you have received shielding letters and texts then that indicates that your medical team have identified you as being high risk/extremely vulnerable. In that case, you should continue to shield until advised otherwise.

Prunes
Prunes in reply to Paul_Howard

Thank you and absolutely I do intend to shield until told otherwise.

But there does seem to be a hole in the BSR risk stratification guide for those of us who take one immunosuppressant and have an underlying medical condition, which I imagine are quite a lot of people!

Paul_Howard
Paul_HowardAdministrator in reply to Prunes

You're completely right. I've gone back to their chart and it is a gaping omission. I'll send an email to one of clinical reviewers for their advice and we'll amend the article after hearing from them.

Paul_Howard
Paul_HowardAdministrator in reply to Prunes

Hi Prunes,

I've had a very speedy response from Professor Chris Edwards.

He has said that for someone on a single immunosuppressant with a comorbidity it is much more difficult to classify risk and needs to be reviewed on a case by case basis.

It really depends on how much of a risk the comorbidity is considered to be and the dose of immunosuppressant.

As you've suggested, the flowchart from Leeds would indicate you would be in the increased risk, but not highest risk group. However, Prof Edwards would advise clinicians to analyse these cases individually.

Prunes
Prunes in reply to Paul_Howard

Thank you for clarifying that. That's really helpful for me and I'm sure for the others in the same situation.

I have my letters and texts telling me to shield. I have spoken with my rheumatology team during lockdown and they have advised me to shield; I will of course continue to do so.

Best wishes to you all

Thanks Paul for taking the time to update us all of the changes. Much appreciated x

Thanks Paul, the third orange box confused me a bit. Initially I thought that I had been switched to the social distancing catagory, but because I'm on long term pred I need to shield I think.

I'm getting the impression that steroids are of a much higher risk than initially thought?

Paul_Howard
Paul_HowardAdministrator in reply to happytulip

Hi happytulip,

I'm not sure whether steroids are a higher risk than initially thought, but the evidence so far does link the medication to increased risk of hospitalisation from severe COVID-19. They appear to be a higher risk than other immunosuppressants (which may be less of a risk than initially thought).

Got it.

Thank you for posting Paul

Thanks for the update Paul, that’s very helpful.

Thanks Paul. Can I just clarify that those who receive the flu vaccination are also still included in that middle group according to government guidance.

Paul_Howard
Paul_HowardAdministrator in reply to Tykle

Hi Tykle,

The risk groups are decided mostly by the reasons you would have been invited for a flu vaccine. Generally, if you are invited for a flu vaccine, it suggests that you are at an increased risk for complications from respiratory illnesses. Not everyone who receives a flu vaccine will be at the same level of risk, which is why it has been split into different groups.

Hi Paul I have Lupus SLE been shielding but apparently now have to compete a occupational health referral through my company to be able to know when to return. I'm on Azathioprine, Hydroxychlorine and Ramapril apparently helps close holes in my kidneys, I stopped my steroids in Jan after 8 years but really confused where I stand? I work for Tesco and have 30,000 customers a week coming through the doors, to say I'm a little nervous is an under statment... Any advice plse?

Willow1414
Willow1414 in reply to Freshgirl

Hi Freshgirl

If your condition is stable is the key to wether you should be shielding or not ,it’s better to be safe . If you did return to work , due to your medical condition and medication could you ask if you can be put on a job that does not involve dealing with the public . Stress can bring on a flare .

Write a letter to your supervisor regarding this . Ask them to sign it , and ask for a written reply back . Nothing nowadays should be taken by word of mouth when it involves your health and wellbeing .

Hope this helps .

🦋❤️

Freshgirl
Freshgirl in reply to Willow1414

Thank you I am going to contact my consultant too

Paul_Howard
Paul_HowardAdministrator in reply to Freshgirl

Hi Freshgirl,

Willow1414 has given you some great advice.

If you have a shielding letter then you should not return to work until the official guidance says so. You would just need to provide the letter to your employer as sufficient evidence.

If you don't have a shielding letter, as you are taking immunosuppressants it would probably only be safe for you to return to a workplace if they can ensure you are able to strictly follow social distancing. Your workplace will need to conduct a risk assessment and may need to redeploy you for this to be possible.

It's all brilliant information and the UK lupies are is very lucky to have this supportive site with such great resources.

I hope you're all coping over there

Sorry to be pedantic and pernickitty - but ( in Australia ) we were told by top medical authorities there was no need for face masks - until the country imported enough for medical staff and then everybody else.

Now they're admitting to the deception and encouraging face masks.

If you have a box of them and feel safe wearing a mask- please wear it when you go out - especially on public transport and enclosed interiors where youre sharing re - circulated air for prolonged periods of time.

I believe (?) if you want to sew you're own - denim is the best material.

Paul_Howard
Paul_HowardAdministrator in reply to Freckle1000

Hi Freckle1000,

The UK is continuing to change guidance and is increasingly enforcing the use of face masks.

That's a relief to hear.

The new advice for those shielding in Wales has been released. It states that if you have been advised to shield you are now asked to continue until 16th August.

gov.wales/shielding-continu...

13th June EDIT

I received a new shielding letter yesterday - which confirms the instruction to shield until 16th August, but which also incorporates the English advice about going outside with one other person etc. Good to know.

Hello Paul

Thanks for the update.

I would like to ask what happens if you have a personal letter from a Rheumatology Department asking you to shield until the middle of July 2020?

Is that letter over ridden by new guidelines?

I had presumed that the letters from the Rheumatology Departments are based specifically on an individual assessment scale?

Thanks and kindest Regards

Paul_Howard
Paul_HowardAdministrator in reply to eunidarling

Hi eunidarling,

I would imagine that the letter from your medical team would overrule any blanket policies regarding shielding. I'm expecting shielding to be extended in England in an announcement next Monday because last week it was extended to 16th August in Wales and today it was extended to 30th July in Scotland. If this is the case, you should receive a new letter.

Thanks so much Paul for the clarification.

Hi Paul

I was prescribed Azathioprine yesterday as I’m mid flare. A few weeks ago I Had a one week course Of prednisone 30mg. I also have high blood pressure and CKD.

Been told I don’t need to shield. I work in a school so understandably worried. Does this advice sound right? I’m so confused! Thanks

Paul_Howard
Paul_HowardAdministrator in reply to DPJ66

Hi DPJ66,

Was it your doctor who told you that you don't need to shield after starting you on this new course of treatment?

With your active lupus, immunosuppressant and additional risk factors it sounds like you would either be in the 'moderate risk/vulnerable' group or the 'high risk/extremely vulnerable' group. This would probably be a clinical judgement.

Either way, the guidance would recommend that you don't attend the workplace at the moment. Have you spoken with your employer?

Hi Paul, thank you for your reply. It was the consultant as he said guidelines had changed again. I’m waiting to hear back from my GP as I don’t feel well enough at the moment. My lupus has been ok for a good few years. I have spoken to work and they said I have to go back if I’m not shielding. I’ve been signed off the last two weeks due to the flare.

Thanks for any input

Paul_Howard
Paul_HowardAdministrator in reply to DPJ66

Hi DPJ66,

Definitely speak to your GP about whether they think you should be shielding. There has been no communication about changes to the risk categorisation of rheumatology patients, so I'm not sure what guideline change your consultant may be referring to.

If your doctors don't think you need to be shielding, your work should only be having you return if you cannot work from home as if they have sufficient precautionary measures in place to ensure strict social distancing can be maintained.

DPJ66
DPJ66 in reply to Paul_Howard

Thank you Paul. I will be speaking to my GP later today. My consultant said the change was to do with only being on one immunosuppressant.

Work is difficult as I work in a school office and have dealings with children when they are poorly.

Work have said I won’t have to do that but keeping 2m distance will be difficult.

Thank you for your help, which I do appreciate.

Paul_Howard
Paul_HowardAdministrator in reply to DPJ66

As I mentioned, the guidance hasn't been changed for rheumatology patients. You may be on only one immunosuppressant, but you have other risk factors that also need to be considered when categorising your risk.

If you are unsure about your risk in returning to the workplace, perhaps it would be helpful for your employer to provide the full details of the risk assessment they have conducted?

DPJ66
DPJ66 in reply to Paul_Howard

Thank you Paul. I will definitely take your advice.

Thank you once again.

DPJ66
DPJ66 in reply to Paul_Howard

Hi Paul,

Just thought I’d let you know that my GP has said I should now shield and has issued the letter. Thanks for your advice yesterday

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