Is anyone else confused or is it just me?! I have a lupus diagnosis and take hydroxy daily. At Christmas I had a chest infection which has resulted in a CT scan and referral to respiratory consultant but that is on hold at the mo, for obvious reasons.
I have been working from home for the last 7 weeks as I thought I was ‘vulnerable’ but have just found out that I am in the ‘strict social distancing’ group with no need to self isolate.
Any thoughts anyone? Anybody fit into a similar ‘lupus category’ as me? I know all lupus patients present differently and probably with different degrees of vulnerability but really don’t want to find out that actually I am ‘vulnerable’ after all !!
Thanks everyone! Off to finish my seed planting now 😊Fingers crossed they grow!🤞
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Susieliz39
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I think it is important to focus not on the categories but on keeping yourself safe. Regardless of category, I believe anyone with a chronic illness has a higher risk of dangerous complications if infected, so I'd isolate as much as possible until a vaccine is available.
They do not fully understand this new virus and do not know the long term effects of getting it, so stay safe and minimize your risk as much as possible. Just recently they have come out saying that they are discovering there can be blood clotting complications caused by covid, and lupus patients can have issues with vasculitis and blood clots apart from covid, so I'd take this very seriously if you have lupus and limit outside contact whenever possible.
Thanks for your reply AimeeA. It really is a minefield. Lupus does appear to be a very grey area that is not agreed upon. I agree that outside contact needs to be limited, as potentially the consequences could be serious. It makes it difficult though when ‘the criteria’ doesn’t agree!
I am currently not on any meds because I am extremely diligent to avoid my lupus triggers, and that taught me persistence in terms of guarding my health and the rewards involved in taking it seriously.
I have had lupus vasculitis in the past (years ago), but they now believe covid can cause vasculitis and/or blood clots, so I'm not messing around with this virus and my lupus! I have to go out to get food, but I only do it once every 2-3 weeks and I am fully masked up and gloved up and wash up very carefully when I return home. This virus can be life or death, so I'd rather eat boring food from my pantry and freezer for a couple weeks rather than go out more often and catch this...
Thanks Aimee for sharing. I’m really impressed with no meds! I’m reading the ‘despite Lupus’ book at the moment which is really informative and helpful. I think I need to take some of her advice and who knows, I may end up reducing medication too!
She recommends charting symptom, triggers etc to establish flare patterns but I’m not always clear what they are. A trigger doesn’t always appear to be apparent but I suppose I need to look a little harder to find it!
Just know that I’ve lots of energy today, so that’s good👍 Got a good read at the ready for ‘the slump day’!
Hi Susie, I think depending on which meds that you are on might increase your risk. For example if you are on hydroxychloroquine only you wouldn’t be as great a risk as if you are on high dose prednisone, azyrhroprine, methotrexate or other medication that causes bone marrow suppression, lower white count and less ability to fight infections. As Aimee says I would shield yourself to the best of your ability as this is an unpredictable virus. Take care. XNan
I would also say that you are at a risk with your chest. It might be worth speaking to your GP and finding out the results/report on the CT scan because anyone with lung disease or conditions need to be extra careful. You sound as if you are doing very well regarding your lupus though!
The ratings are your medical response so if you are on steroids et you would be more vulnerable in hospital. You have a king issue which makes you more vulnerable.
I am on the same weighting as you and recognise that there are still risks. No I may not need high level medical intervention but I was effectively shielding as any infection takes forever to recover from.
As it happens I got the stupid thing anyway, I am now on week 4 and the cough is not going anywhere. It has been up and done to different levels of severity. I have not needed to go to hospital but there have been some tough days.
You are in the vulnerable category, but not the extremely vulnerable one. If you search I have written a full post about the distinction as it does appear to be causing a lot of confusion. Lupus UK also has a blog post about this.
Being vulnerable means you need to follow strict social distancing as you have an increased risk of complications. This means self isolation, with only essential contact if you cannot get someone to go to the shops for you etc. You should not be working outside your home. Where possible you should have prescriptions delivered and someone else should shop for you. You should only be leaving your house for essentials and exercise. You should be extremely vigilant about the 2m rule and hand washing if you do touch anything from out with your household. These rules are the same for everyone at the moment but those who are vulnerable will be following them even once lockdown is over (most likely). Vulnerable people also need to be much more thorough about following them. This should protect you from getting the disease.
If you were extremely vulnerable then you would need to fully shield. This involves not leaving your house for any reason (other than emergencies), no exercise and not having contact with anyone that is in your household. This includes sharing a bed, bathroom etc and often means that your entire household has to isolate with you. This is extremely difficult and is what is known as 'shielding'.
The two categories are very different but both are being protected more than the average population.
Many thanks everyone for all your replies and for being patient in answering my question that has been asked and answered many times over!
I think the conclusion I have come to is ‘stay put’. Especially due to on-going lung investigation. I do wonder though if this is a result of having ‘it’ at Christmas. I had many symptoms of Covid and felt so poorly, it wouldn’t surprise me but know it wasn’t supposed to be around then.
Had a lazy morning, so I’m off planting potatoes now! Anything other than cleaning! 😂
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Confused?? lupus or mixed connective tissue disease 
Confused! 
New and confused! 
confused 
