Lupus rash?: My official diagnosis is UCTD but the... - LUPUS UK

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Lupus rash?

jennawings profile image
10 Replies

My official diagnosis is UCTD but the rheumatologist has used the words lupus and Sjögren's syndrome during consultations.

Is it possible to have a mild flare with a lot of the flare symptoms but any blood tests all come back within a normal range?

I have attached a photograph of a rash that I have developed on my cheeks and nose. It is not very prominent, it looks a little like I am wearing blusher (no makeup is worn in the photograph). Is this what people call the lupus butterfly rash?

Thank you in advance 😬👍🏻

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jennawings profile image
jennawings
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LupusAdmin3 profile image
LupusAdmin3LUPUS UK

Hi,

Have you had any blood tests that are specific for lupus? Unfortunately we are not medically trained here at LUPUS UK so i am unable to comment on what the rash could be. How long have you had the rash for? Could it be due to sun exposure?

If you would like me to send you one of our free information packs i will be happy to do so. I can also include these factsheets that maybe of help to you;

-'Lupus The Skin and Hair'

-'Lupus and Mixed Connective Tissue Disease'

-'Lupus and Associated Conditions'.

Just send me a quick private message or an email to hayley@lupusuk.org.uk with your full name and address and i will post them out to you.

Best wishes,

Hayley

LUPUS UK

jennawings profile image
jennawings

I've had the rash for a few weeks but it is becoming more noticeable and it also tingles on my cheeks. I've had loads of different blood tests but I'm not entirely sure what was in them.

I shall message you now with my address.

Thanks

misty14 profile image
misty14

Hi Jennawings

Welcome to the difficult to diagnose club which I am a member of as well. It is possible to have flare symptoms and it not show up in blood tests. This is what is happening to me and I have been given a diagnosis of UCTD like you!. It does make it hard because not all Rheumy's recognise this and we have to find one willing to treat us regardless!. Are you being treated?. Hope I've helped?. It's good to know we're not alone. X

jennawings profile image
jennawings in reply to misty14

Hi misty14,

I am under treatment with a rheumatologist but he always seems quite vague in his opinion. I am being treated with an array of different medication which has helped lots. It just isn't now as I think I am entering a flare (if I'm not already) as I feel worse than normal.

It sucks!

:)

misty14 profile image
misty14 in reply to jennawings

Hi Jenna

What treatment are you on?. What could help you is a short course of steroids to improve your symptoms. Has this been done before?. Are you due to see your Rheumy soon?. If not it might be worth seeing if you can be considered for a cancellation by ringing the clinic. I've found over the years of battling for a diagnosis that it's a good idea to see your Rheumy early to concentrate his mind!. X

jennawings profile image
jennawings in reply to misty14

Hello,

I am on hydroxychloriquine, prednisonole, amytriptyline, nifedipine (for the raynauds) and acdal calcium supplements.

Been on the prednisolone for just over a year and it has been my saving grace. It's just past 2 weeks I've been feeling awful. I'm now actually finding breathing tricky - no pain or tight chested feeling. More of a feeling that each breath is not meeting my oxygen needs. I feel like a really old lady when trying to do any physical activity such as walk up the stairs.

It's rubbish!

misty14 profile image
misty14 in reply to jennawings

Hi Jennawings

You need to get your breathing looked at, either by your GP or Rheumy as you can't go on the way you are and it can be treated. All the best X

jennawings profile image
jennawings in reply to misty14

What can they do to treat it?

misty14 profile image
misty14 in reply to jennawings

Hi Jennawings

There are several reasons for the breathlessness symptoms which is why it needs to be checked by your GP and Rheumy. Steroids can be a treatment depending on what it is but the dose would be much higher which is given only where necessary!. Try to see your Rheumy earlier especially as you feel unwell.X

amandajane76 profile image
amandajane76

I am going through the same.such a difficult time is nt it xx

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