Lupus and Coronavirus (COVID-19) - UPDATED 17/02/2021

[Paul_Howard]

We have updated our information and guidance about lupus and COVID19 - lupusuk.org.uk/coronavirus/

From today an additional 1.7 million people in England have been added to the "clinically extremely vulnerable" list and advised to shield (Scotland, Wales and Northern Ireland have yet to make an announcement about whether they will do the same).

This means that some people with lupus who previously haven't been advised to shield may now receive a letter. We don't currently know how many people with lupus this may affect.

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

Lupus & COVID-19 Vaccination:

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

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...

[Hatelupus]

Thanks Paul, it will be interesting to see what the additional criteria is with regards to the new health conditions added onto the list

[eekt in reply to Hatelupus]

Lupus (SLE) is explicitly included under 'Health conditions and treatments/Autoimmune and haematological' conditions though the 'risk assessment' is a calculation based on multiple factors so presumably SLE alone won't mean anyone will move into the shielding category unless it's broken down by severity (it's impossible to tell from the info given...there is a calculator tool but you need a HSC ID to access it) xxx

[Hatelupus in reply to eekt]

Thank you for the above information x

[Paul_Howard Partner LUPUS UK in reply to eekt]

Hi eekt ,

That's right. A diagnosis of SLE alone will not mean that you are categorised as "clinically extremely vulnerable" and added to the Shielded Patient List.

I've exchanged emails with Dr Megan Rutter this morning and she has tested the model on a few different "case studies" and it doesn't seem that SLE is very heavily weighted, meaning that by itself, it doesn't significantly increase your risk. As a result, we don't anticipate many people from our community will be added to the Shielded Patient List - although that stands to be seen.

[eekt in reply to Paul_Howard]

Thanks Paul, great stuff and very fine work you do for us all! Thank you! xxx

[Bobbydoodle in reply to Paul_Howard]

Thanks Paul. Do you know if APS will be on the list? It doesn’t ever seem to be mentioned during all this week pandemic which surprises me as it’s a clotting condition.

[Paul_Howard Partner LUPUS UK in reply to Bobbydoodle]

Hi Bobbydoodle . This new model does consider thrombosis and pulmonary embolism as risk factors when assessing people - however, we don't know what weight they have been given and therefore how much of a risk they represent in isolation.

[kingsnorth]

Thanks for that very informative and answered a lot of my questions x

[Loopyru]

Thanks for all of this Paul . Am sure that lots of people- including myself, are very grateful to you.

[Lindi6]

Hi just to let you know I've received an email this morning asking me to shield and that I am clinically extremely vulnerable and I will called for my vaccine very soon. So glad I shielded on my doctors and hospitals advice at the very beginning. I have mctd and Lupus sle.

[Hugs1 in reply to Lindi6]

Hi lindi6 can I be nosy and ask what meds you take for your Lupus and does mctd stand for mixed connective tissue disorder. The only reason I ask is I am having trouble with my GP about getting into group 6 for my vaccine x

[Lindi6 in reply to Hugs1]

Hi I'm on Hydroxchlorquin and Methotrexate and I recently had a steroid injection. I also had a rutiximab infusion a couple of years ago but it didn't really help. Yes mctd is mixed connective tissue disease. x

[Willow1414 in reply to Lindi6]

Hi Lindi6

Can I ask , what medications you are taking ?

I have a diagnosis of SLE /Sjowgrens overlap . I’ve been flaring for well over a year , and feel quite poorly , both methertroxate and Azerthioprine have been prescribed and had to be stopped , methertroxate sent my liver function way out and Azerthioprine gave me pancryitis .

I have appointment this Thursday , myclofenic is what will be tried next .

Yet my doctor has said I’m normal risk and should not even be in group 6??? Has I’m not taking Azerthioprine ,

I do take hydroxychloroquine , and my condition is by no means controlled .

My docter it seems is not reading, or does not have enough knowledge in regards to any priority for me .

🦋❤️

[Lindi6 in reply to Willow1414]

Hi I take Methotrexate and Hydroxychloroquin and I recently had a steroid injection. I had a rituximab infusion about 2 years ago but didn't seem to help. The hospital keep taking me off Methotrexate because I keep getting really low white cells and lymphocytes. x

[elizabeth-57]

Hi, I know I’ve asked before but I have SLE and only on hydroxychloroquine medication and I am 63. I’m still not sure what group I fall in, if it’s group 6 or group 7.

[Paul_Howard Partner LUPUS UK in reply to elizabeth-57]

Hi elizabeth-57 ,

You should be in group 6 because of your diagnosis of SLE. Hopefully you should receive your invitation for your first dose in the next week or so.

[elizabeth-57 in reply to Paul_Howard]

Hi Paul, I messaged my drs about what group I was in. I got a message back saying that they’d finally looked at this and on their records I’m in group 7 which is why I haven’t heard anything yet, but by their reckoning I should be in group 6 or even 4 (not that I could understand why they thought 4), but they couldn’t see why the system isn’t picking this up. They’ve sent a task to try to get this sorted. So will probably give them until the end of the week and give them a call or send a message.

[elizabeth-57]

Just posted the above reply and forgot to add that I’m a bit confused as to what group I am in and I’m a bit scared that my GP will think I’m in group 7 and not 6. They also ask not to contact the surgery about it. I have private messaged them but they couldn’t tell me.

[Paul_Howard Partner LUPUS UK]

Hi Hidden ,

Renal disease is included in this model. It was also considered in the risk stratification carried out back in spring 2020.

[Rosiaz]

I have my 2nd Oxford jab this afternoon. I have had a flare over the last days , the fierce headaches gone , also gastric symptoms , but brain fog with unsteady sense walking remains . Should I go ahead with jab. ?

[Paul_Howard Partner LUPUS UK in reply to Rosiaz]

Hi Rosiaz . I'm sorry that I have only just seen this. Did you have your second dose? I'm afraid that as I am not medically qualified, I wouldn't be able to advise you whether it is recommended to have the second dose or not if you had an adverse reaction to the first dose. This would need to be discussed with a member of your medical team.

[Rosiaz in reply to Paul_Howard]

Thank you for your reply . Yes , I had it as I was not too concerned apart from a few lines in the Spring 2021 "Lupus UK" magazine page 9 .

" If you are having a lupus flare , it is recommended that you discuss the timing of your vaccination with your consultant. " I t was not practical to be able to do that.

The last ten days or so I have been struggling with increased dizzy spells at times and much increase brain fog and more.

I was not confident of managing the 15 to 20 minute walk to our local centre. However with my Nordic sticks to help me plus my husband walking home afterwards , all went well.

Hopefully it will continue to do so.