COVID-19 advice please: Lupus but only take Hydro... - LUPUS UK

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COVID-19 advice please: Lupus but only take Hydroxychloroquine!

Jo191
Jo191

I have Lupus but only take Hydroxychloroquine. I am confused- do I come under the 12 week isolation or is it only if taking immunosuppressants as well?

They keen referring to those who have the flu jab (I do!) I've read the excellent updated information on this site but still don't know!

Many thanks

Jo

15 Replies
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All SLE patients are advised to self isolate.

Paul_Howard
Paul_HowardAdministrator

Hi Jo191,

I'm preparing to update the article to improve clarity - I'm just waiting for the OK from our webhosts so that it doesn't crash the site again.

All people with a diagnosis of SLE, regardless of treatment or current disease activity levels are recommended to self-isolate for a period of 12 weeks.

Jo191
Jo191 in reply to Paul_Howard

Thank you very much- I really appreciate the clarity

Dear Paul,

The UK govt guidance doesn’t include autoimmune conditions in the 12 week self isolation.

I have Lupus, Sjogren’s and Rheumatoid arthritis.

Should I self isolate? I am not sure the employers will agree as it’s not there in the guidance in black and white and I am not on any medications at the moment. I stopped taking hydroxychloriquine a couple of years ago due to side effects.

Could we get the Boris update to include autoimmune conditions specifically?

Thanks for your help!

Annie

Paul_Howard
Paul_HowardAdministrator in reply to LupusandSjogren

Hi LupusandSjogren,

I've been getting this feedback a lot of the last 24 hours. The list of conditions on the government guidance is not, and can not, be exhaustive. It is the same list used for the annual flu vaccination programme (except it inconveniently doesn't state it isn't exhaustive on this). I believe they are planning on publishing more guidance about which conditions are included on Monday (23rd March) but even then, I wouldn't count on it being exhaustive.

It is incredibly unlikely we can get policymakers to change the list to include autoimmune rheumatic conditions in the timeframe of a few weeks.

Please speak to your employer. Are they comfortable potentially putting the health and wellbeing of their employees at risk? We know that this virus isn't only dangerous for the elderly, we have seen that those with underlying health conditions are also at risk and there have been fatalities. If your employer is going to stick to using this arbitrary standard to decide who should be able to isolate then I'd recommend you speak to your union if you are a member of one.

Jo191
Jo191 in reply to Paul_Howard

Once the article has been updated I will use it to help support the conversation with work!

Also forgot to add, I have never had an invitation for a flu jab despite having these conditions for nearly a decade!

Paul_Howard
Paul_HowardAdministrator in reply to LupusandSjogren

Hi LupusandSjogren,

You are not alone in that. Again, it is because the list is not exhaustive and your GP clearly hasn't applied sufficient clinical judgement to invite you in. The current system is inadequate and people with rare conditions fall through the cracks. Unfortunately this puts pressure on the patient to be their own advocate.

Thanks Paul,

I will try and use this website guidance to see where I can get to with my employer. Anxious times ahead!

I don’t want to be using public transport in peak hours to commute to work when I should be self isolating!

Hidden
Hidden in reply to LupusandSjogren

You may not want to use public transport without a N95 mask and latex gloves? The virus can live on surfaces for awhile, so even if no one else is on the transport with you, someone could have left something behind. Just a thought.

Hydroxy and methotrexate gave me blood clots in my legs, vertigo, and severe eyes strain. Not sure which caused what. Make sure your doctor knows. Good luck.

Hi Jo,

I haven't heard anything officially but although th hydroxychloroquine, isn't an inmunosuppressant, you probably do need to self-isolate as its likely your immune system is weaker than may be some others and guidance seems to be if you have SLE you should.

I guess everyone needs to make a decision that they are comfortable with, given their own particular circumstances. .

Wishing you all the best.

This sounds like a question for your your consultant. It' s above my pay grade.

Wishing you the best,

Molly

Thank you for all your helpful replies. I appreciate everyone is different and there is no one fit for all. I’m seeing my consultant this morning so will feedback what she says. Thank you and stay well x

I take Hydroxychloraquin for Lupus ( but I have also been prescribed about a dozen other drugs to repair brain damage after removal of 2 brain tumours). All this has brought my immune system to an all-time low, so both my wife and I have already enjoyed a self-imposed six week self-isolation regime as we are both retired, so it is an improvement for me [having her company], but it is stressful for her. she's about 5 years younger than me, and more healthy, but doesn't want to bring germs home which could well kill me.

I have swollen legs, and dizziness, can scarcely walk even to the bottom of the front garden entrance and frequent mouth ulcers, which I put down to HYDROX..... but I sleep well.

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