Confusing Time!

Wow, where do I start?!

I'm new to this site, not diagnosed formally as yet but been started on Hydrochlorquine and Naproxen, suspected Lupus or early RA.

I thought this started last year for me with my first 'flare' starting in hands and moving into knees and up to elbows.

I had really been going along the RA or OA route until my last Rheumy appointment where Lupus was mentioned. I'd never really heard of it before, but am now thinking all the things I've had problems with over the years might now make sense...

Raynauds syndrome-thought it was just inherent bad circulation, butterfly rash-thought it was rosacea, tiredness and depression since teens, IBS, headaches?!

But when u look so well with 'glowing skin' you feel you aren't being taken seriously and above all, incredibly lonely.

It's been really helpful and reassuring to know there's other people going through similar journeys..

2 Replies

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  • Oh yes I really recognise everything you are saying - although oddly - I had heard of Lupus but not RA until I was misdiagnosed with RA in 2011 - now rediagnosed with Sjögren's.

    I too had bilateral joint flares which earned me the RA diagnosis - but Sjögren's can mimic both RA and Lupus. I also have OA and Raynaud's. My presentation of Sjögren's is very like MS and Lupus.

    It can be lonely I agree - but using several HealthUnlocked communities (this LUK one, NRAS, Scleroderma & Raynaud's and Thyroid UK) has helped me to feel a lot less isolated. This community, in particular, means the world to me now - even though I don't officially have Lupus. Sjögren's is a sister disease.

    Best of luck with it all and please keep us updated 😊

  • Hi LLH76,

    Welcome to the LUPUS UK community forum. I hope that you find it a helpful place for support and information.

    Please keep us updated with how you are getting on. I hope that you find the treatment will help to alleviate your symptoms. Hydroxychloroquine can take 3-6 months to kick-in so it does unfortunately need a lot of patience.

    If you need any more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

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