Useful rheumatology appointment today: My... - LUPUS UK

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Useful rheumatology appointment today

Rubylu profile image
6 Replies

My rheumatologist was especially attentive today and came up with a useful plan. This goes a long way to feeling like someone's got the safety net in case I fall.

I recently posted about my knee effusion which was aspirated and steroid injected. Well that has been 70% successful but some effusion remains. My wrists and thumbs in particular are swollen and have effusions too. My malar rash has been quite bad and ulcers on the roof of my mouth not especially painful but numerous and troublesome. My left foot bones keep subluxing which is beginning to cause a permanent deformity.

So, the plan is to increase my AZ once I have got used to the two new tablets I was put on earlier this week. I might have steroids added back in, but this may be contraindicated, so is going to speak with the other consultants I'm under (yay, communication!). If the joints become any more painful or swollen I can ring the rheumatologist's secretary to be seen asap.

I'm having an MRI of knee, hip and foot, but in the meantime I was sent straight round to the physio who assessed my foot and gave me a supply of orthotics to place in my shoes in the meantime, to change the alignment of a few bones.

I came away feeling well looked after today with a clear plan of action and short cut if things worsen. Couldn't fault the NHS today, which is a lovely thing to be able to say.

Still in quite a lot of pain, but it's always more manageable when you don't feel abandoned.

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Rubylu
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6 Replies

This is really great news on all levels RT - apart from the pain and damage to feet and other parts. I've known a lot of people with RA who suffer from erosive damage to feet, knees abd hands but didn't realise that this type of synovial swelling and erosion also affects those with Lupus too until you started posting.

I'm so glad that you are clearly in such safe hands - what a difference it makes as I know for myself. When the NHS works it's very heartening I agree! X

Rubylu profile image
Rubylu in reply to

Thanks TT, the MRI will show if there's any bony changes. The synovial fluid was also checked for gouty crystals, but it was clear of that and I was told it all points to the Lupus being the culprit !

I feel for anyone with polyarthralgia and or polyarthritis. It's horrid and takes a lot of management!

in reply to Rubylu

Yes it's what got me misdiagnosed with RA for five years. I think all these rheumatic diseases of ours are excellent mimics. Maybe they should be awarded best actor awards?! Xx

Charliebear68 profile image
Charliebear68

Oh Ruby - that's so refreshing to hear. I do believe that it helps greatly when you're listened to.

Have a good and as pain free weekend possible 🤗🤗🤗

Charlie xx

Rubylu profile image
Rubylu in reply to Charliebear68

There's no quick fixes in rheumatology as far as I can tell, but I do feel cared for today.

Wendy39 profile image
Wendy39

Wonderful to read! A positive post. So pleased for you. It sounds like your joint need a lot of attention and you are going to get it. x

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