LUPUS UK

Here we go again

Hi I’ve had a good run since coming out of hospital in September (due to we think methatrexate possibly causing a fistula due to my lowered immune system) but the last 2weeks you all know you can tell the MCTD/lupus is about to kick off head ache sore muscles jelly legs I’ve had painful joints in my hand for pos ten yrs but yesterday my right hand swelled up and was so painful again I’m somewhat used to the pain but the swelling was a bit alarming this morning swelling has gone but fingers very stiff my daughter had a lady’s night it’s part of her recovery from anarexia so I went for a meal with my father in law and struggled again to use a knife and fork 🤬🤬I would also like to ask you all do you drop thing a lot the last year or two I’ve been dropping thing at work at home sometimes very difficult to hold and control cutlery widget over thanks for your patience

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Hi Ian, sorry it’s all kicking off again. When can you go back on the methotrexate?

My hands don’t swell up too much (just the middle knuckles when I’m flaring) but I do drop things a lot in a flare with the weakness and lack of coordination.

Can they give you any other treatment to stop you re-flaring like steroids?

Hope your daughter is recovering well - not nice for her or a parent to have watch her go through that.

X

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Hi I can go back on methatrexate in sept my daughter has had to stop working at the nursery this week due to her back and leg pain she’s back at rumi soon 🤞

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Hi Ianrussell69,

Have you thought about asking for a referral to see a physiotherapist?

According to The Lupus Encyclopedia, “About 50% of people who have SLE will develop actual inflammation of the joints”. This can cause difficulty holding objects and performing tasks. Consultants can treat the inflammation of the joints with NSAIDs, steroids and hydroxychloroquine.

We published a blog article on ‘pain management’ which I hope you will find useful: lupusuk.org.uk/pain-managem...

Please keep us updated, wishing you all the best.

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Thanks I have been to occupational health and had splints made and I very very lucky as I have a fantastic physio who has gone above and beyond for me and my daughter and yes the physio dose seem to o help

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