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My Mum and lupus

Hello All!

My mum was diagnosed with lupus at 18 following a blood clot and stroke. She suffers daily with it but last week she had a flare up and was admitted to hospital. she is now out and back at home. Although she isn't herself I have never seen her like this I am living with her and trying to help her a few symptoms of what is she dealing with

Severe Shaking hot and cold ( no temp )



Severe fatigue

Back ache

Neck Ache

Would just like a little advice on what to do what to look out for and if this is a regular thing

7 Replies

Has your mum been on prednisolone recently and have they reduced the dose?

If she wasn't like that while in hospital I think I would be inclined to call her GP and ask for advice. If at any point she gets worse I wouldn't hesitate to call the emergency services - a paramedic will check her out as well as, if not better than, a GP. At the very least, call 111 if you are in the UK, though if she is getting worse don't waste time, dial 999.

The rigors (the shaking) and confusion do worry me a bit - and that is why I'm saying to get advice.

1 like


im not sure about the drugs I will ask her

Thank you for your reply yes she has been in and out of A&E for two days now which is worrying it feels like nobody know what it is! something beginning with S has come up with stops saliva and tears etc not sure if that has something to do with that

thank you so much


Hi EllieJones21,

That sounds like Sjogren's syndrome. You can get more information about this at

1 like

perfect thank you


I would give it time. Wen u have had something like that it is soooooo tiring and the body has got to get back to normal n that is not going to happen over night. A lot of hospitals let people out too early. Make sure she has blood stockings on all the time and don't b afraid to get a dr call ev day even if u feel u need support. It also does change someone she will sleep a lot cos of meds and cos her body Is trying to right itself which can take weeks even if she does not eat make sure she drinks as that's how clots are partly formed. You remember to look after your self and let her sleep. Also it will be the meds too

1 like

Thanks everyone for your support mum is back in hospital with possible infection xxx


I'd "like" the post if it didn't sound insensitive! That was what I was worried about and I'm pleased they are acting on it.

All the best to you both. And have a virtual hug - as I'm sure you are very worried about your mum xxxxxx


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