As the title suggests I have not received a text to self isolate. I suffer from SLE, secondary Raynaud's and Sjogrens syndrome, hypertension, osteoarthritis and B12 deficiency.
Currently I am on hydroxychloroquine 200mg, esomorazole,propranolol and calcium and vit D tablets. I had a flu jab in 2018 and it caused a huge inflammatory response that I was told not to have one in 2019. So does that mean that because I didn't have a flu jab then I'm not in the high risk list?
I work for the NHS in a Pathology lab and will have to handle Covid-19 blood samples ( I'm currently in isolation as a family member had a cough) I am due to go back to work in a week's time and obviously my anxiety is through the roof.
Do I need to ring my GP and ask them for the best possible way forward. I'm hoping someone could shed some light. Any advice is welcome.
Thank you for taking the time to read my post.
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Hi I get the flu jab every year as advised and have had the pneumococcal jab, also on hydroxychloroquine 400mg and have SLE lupus /schleraderma overlap and like yourself haven't heard anything. You will find a lot of people are in the same situation I'm afraid.
I've just phoned my GP surgery and informed that they're too busy to send out letters and the government would deal with it?? Verbally told me to stay off work for 12 weeks due to having lupus but I personally feel I should be informed officially. I'm in Scotland and as yet to hear of anyone getting notification up here
Hi, I live in Scotland and my surname starts with ‘A’ and no text yet. I’m beginning to think we are doing things differently up here. As we discussed last night, I’ve now messaged my MSP.
Hi, I've just managed to get through to the rheumatology helpline and have been advised that haven't made a decision on whether to send out notifications or not
From my understanding, whether its a text or a letter, you could be waiting up to a week or 2 before you receive one. Though, from the news, MPs were saying that lots of patients will slip through the net (I'm almost sure I'll be one and my Mum too)! But, my rheumatologist told me on Saturday that I should follow the 12 weeks isolation, and someone on here posted the NHS clinical guidelines of managing rheumatology patients during the pandemic, and SLE is considered as 'high or very high risk' - I can see if I can find that document if you think it'd be helpful. x
I think everyone with a weakened immune system should be self isolating. So basically if you are eligible for the flu jab, you self isolate.
There are lupus patients who are Very High Risk, from memory those who are on a DMARD and / or on steroids higher than 20mg a day and a biological medication- either in tablet form, injection or infusion. The Very High Risk also civets those with overlapping co-morbidities such a rental involvement, diabetes, hypertension. Very High Risk people should be following the Shielding Guidelines.
Taking Hydroxychloroquine and no DMARD puts you at Low Risk, from memory. But you still self isolate.
I would think Ben though you work in a lab for the NHS you should be self isolating.
I’ll post a few links for you.
Basically the whole country shouldn’t be going out now, unless you are a key worker, after last nights announcement.
Thank you, everyone for your advice. I am planning to self isolate for 12 weeks as have other conditions but obviously work want some documentation. Hope everyone is staying safe x
For now I'm happy you find my post's on this matter as my understanding is that unless we get clarification officially we should play "mega Safe"
It's possible once things have calmed down that those I'm saying H might be "downgraded" if that's so then from my memory of the busy stressful environment in pathology your employer would be very glad you've rested these next 2 weeks on the assumption that you are in the 12 week category vulnerable H or extremely vulnerable VH 12 week categories because this national emergency will be months
I'm actually disappointed in the rheumatology score chart that I've seen so far , ....because it's not accepting that SLE with hydroxychloroquine entitles you to flu jab ... that alone puts you H High risk 12 week group, rather than green low risks and therefore I'm currently saying you are in the 12 week group
...Yes I know "mild and stable" SLE on lower doses hydroxychloroquine is classed as if "medically were not as Severe" but unless those rheumatology people have Lupus themselves I don't think they understand it and that we still have symptoms.
I myself have symptoms especially severe energy impaired "only just managed pain" despite also having normal routine blood test eg FBC ESR CRP and I'm called "medically mild and stable"
(I'm not even sharing that rhemy scoring document because I severely disagree with it in current form but appreciate they have to consider the extremely vulnerable VH firstly)
Believe me .... all other sources I've seen say assume 12 week Isolate Shield Protection group for all SLE patients
I now would mainly like a quick nomenclature to be able to tell people this. Nomenclature everyone uses because I'm getting too exhausted typing
I've SLE hydroxychloroquine and I'm acting as if red VH and in 12 week Isolate Shielding protect until I am "scientifically certain" that we can "step down" any risk level
You can quote me and I'll deal with any "flack" in a month or so because I can not stand by and see people's lives at risk
Stay home tell work your 12 week ISP until they are certain ...this "Lupus Support Lupus Expert" says so
Thanks for the response. My consultant said according to the guidelines I don't fit the criteria for high risk as I'm stable in terms of my sle.
I did mention that I had a flare when I had a flu jab which left me unable to function properly for 9 weeks. So I posed the question, if a flu jab does that to me what chances do I have if I catch covid 19? She suggested I self isolate for 12 weeks. I think the guidelines for consultants are just as wishy washy as they are are for us lupies.
Hi I have SLE , and I'm on hydroxychloroquine I had to contact rheumatology about how at risk am I and they told me low risk as my bloods have been stable for some time now I told them I was very concerned as I am a domestic for NHS scotland and have been told just to follow the guidelines of shielding like anyone else who doesn't have an underlying medical condition I feel very let down by the whole system and hope and pray I dont just become one of their statistics. Stay safe everyone .
Hi everyone, I'm totally confused. I have Lupus SLE and am on Mycophenolate Mofetil 500mg twice a day. Have to have annual flu jabs and last year was also given pneumonia jab. Have B12 injections every 3 months and also have Raynaulds, osteoporosis and osteoarthritis in my thumb! I haven't received a letter or text. Really unsure what to do as I live alone and what help available isn't clear!. Had to go out this morning to get food for me and cats! Still at least the sun is shining!
I have had lupus sle since 2007 dont have many problems these days but am on mychophenolate 500 mg daily I got a message last night saying not to even leave house but hospital told me am only medium risk still mixed messages
Hi. I work in social care. I have sle/lupus overlap and am on rituximab. I hadn't been able to speak to anyone from reumatology helpline. I know I am high risk but don't think I will fall into shielding group. I feel very stressed about work but can't stay at home. I am hoping at least to get some advice from my reumatology clinic. Am waiting for advice from occupational health at work.
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