Lupus & Coronavirus (COVID-19): Hi everyone, I... - LUPUS UK

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Lupus & Coronavirus (COVID-19)

Paul_Howard
Paul_HowardAdministrator

Hi everyone,

I apologise for the delay in making this article available, but we had to go through medical review to ensure it is accurate. We've now published an article about lupus and coronavirus (COVID-19) on our website for your information and guidance.

Please read it at lupusuk.org.uk/coronavirus/

If you have any questions which have not yet been answered, please let us know in the comments below and we will do our best to be of assistance.

23 Replies
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Thanks Paul. Best wishes Kevin

Thank you ever so much for this. Hopefully all the measures everyone is working on will help keep the situation "as good as it can be".

Thanks so much for this, Paul. I've currently been working from home, as I've just started my Rituximab infusions, and I'm due the second one on Tuesday next week. Based on the information, I don't know whether I should be asking to continue to work from home (I work in Central London and have to commute in using the tube etc.).

Paul_Howard
Paul_HowardAdministrator in reply to BookishVibes

Hi BookishVibes. It is likely that this guidance may be updated in the days/weeks to come as the Government and NHS strategy to delay the spread of the illness develops. There are reports in the news about possible recommendations to stay home from work and school coming - this isn't the guidance at present.

If your employer is happy enough for you to continue working from home then it would probably reduce your risk of coming into contact with the virus.

Thanks, Paul!

thanks Paul very useful - do we go on holiday to areas which are not category 1 or 2

Paul_Howard
Paul_HowardAdministrator in reply to Milliecox

Hi Milliecox ,

There are a list of places which are currently considered to be highest risk for the virus - nhs.uk/conditions/coronavir...

This list will be updated regularly as the illness spreads. I'm not aware of any advice at present to avoid international travel to countries not listed, but due to the fast-changing situation it would be prudent to ensure you have a large supply of your medication available in case your return journey is delayed.

Thank you for all your replies Paul you must be busy! I’m interested as due to go on cruise (not huge ship 500 people, no boarding for people from high risk areas) but Uk now high risk area in some ways. American health officials have said no high risk people on cruises! Difficult to know what to do ...

Paul_Howard
Paul_HowardAdministrator in reply to Milliecox

Hi Milliecox,

I've not seen anything which is currently classifying people from the UK as being high risk as carriers for the virus. That is unless they have recently returned from one of the high risk countries or believe they may have had contact with someone who has been.

Thanks Paul

Thank you Paul, helpful information is now a click away, for all those searching, and wondering. Bountiful health to you and everyone in this special hub,and at HealthUnlocked.. Please,everyone, remember ,wash your hands and these devices that we all use to communicate with here. All my blessings ,wellness, and peace. thestormy sunshine:)

I'm on a low dose of prednisolone (4-5mg) and on a reduction regime as my lupus is considered to be in remission. Do you have any information about whether I'd be considered immunosuppressed?

You'd need to ask you're GP or Rheumatogist what you're lympocyte / Leukocyte counts are.

Paul_Howard
Paul_HowardAdministrator in reply to Treetop33

Hi Treetop33,

Normally prednisolone doses of 20mg per day and higher are considered to be immunosuppressive (at least according to flu vaccination criteria). However, as Freckle1000 has said, some people can have low white blood cell counts as a direct result of their lupus.

Thanx for this Paul 🤗

I'm wondering how the sitch is with testing for Corona..I'm immune suppressed recently changed to MTX..I'm having to have blood tests every two weeks currently....so have to go to he path lab where everyone goes..so I'm used to the coughing sneezing general public!! So if it's a blood test r docs sending those peeps to the hosp?

Kat 😽😽 xx

Paul_Howard
Paul_HowardAdministrator in reply to Krazykat26

Hi Krazykat26,

Testing for coronavirus is done is special isolation pods by nurses in protective clothing - NHS 111 directs people where to get these tests if they feel they need them. You can read more about this at bbc.co.uk/news/uk-51674696

Thank u Paul xx

Hi All,

This is also worth looking at particularly for older people with underlying health conditions including lupus, heart disease, cancer, diabetes etc:

bbc.co.uk/news/health-51703892

Paul_Howard
Paul_HowardAdministrator in reply to Sue_petal

Thank you for sharing this article. I'll be updating our article today based on a few more common questions we've been receiving and this will be helpful.

I am slightly alarmed that there has been no special government advice for at risk groups. I received a semi-threatening letter from the school because I am keeping my daughter at home (she's been sick anyway, but normally I'd send her to school after a few days). The expectation is we send kids to school until told otherwise, but this doesn't work for at risk groups.

Can Lupus UK use its lobbying powers to press for better advice so we can show this to schools?

Paul_Howard
Paul_HowardAdministrator in reply to Treetop33

Hi Treetop33,

It seems likely that additional measures will be introduced in the next few days and weeks, but the evidence demonstrates that the timing for these is very important and shouldn't be introduced too early.

There is a petition gathering momentum to protect immunocompromised families who withdraw their children from school prior to official advice - petition.parliament.uk/peti...

We have very limited lobbying power because we are such a small organisation without staff working in the area of policy. We are monitoring the situation and will lend our voice to campaigns that support the people we are here for.

Not everyone agrees about the timing issue, since it is based on behavioural science not medical science. Plus pro-government pundits are currently circulating the 'survival of the fittest' mentality - let the virus spread to get 'herd immunity' (which is actually only a theory applicable to vaccines). I think it's quite dangerous to be reinforcing that view.

Thanks for the petition though. Be good if more people signed it.

Paul_Howard
Paul_HowardAdministrator in reply to Treetop33

It is an unprecedented situation so it is very difficult to know what action will be most effective. We have expert lupus clinicians reviewing our updated information and guidance now and we refer to their superior knowledge and experience.

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