Hatelupus in reply to eekt2 years ago

Thank you for the above information x

Paul_HowardPartner in reply to eekt2 years ago

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_Howard2 years ago

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

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Bobbydoodle in reply to Paul_Howard2 years ago

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.

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Paul_HowardPartner in reply to Bobbydoodle2 years ago

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.

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Lindi6 in reply to Hugs12 years ago

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

Lindi6 in reply to Willow14142 years ago

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 in reply to Paul_Howard2 years ago

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.

Rosiaz in reply to Paul_Howard2 years ago

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.