Getting tested for Lupus with crest

[topsmrp]

My doctor suspects Lupus with crest .

I haven't displayed the characteristeric rash on my face at all.

I have had a rash on either arm .

My vitamin D was not sufficient and my antibodies were up .

I see a rheumatologist in 3 weeks .

Sorry to waffle I'm anxious .

[Hidden]

Hey don't apologise - of course you are anxious - we all get anxious about possibly having connective tissue diseases and seeing a rheumatologist for the first time.

The best thing I can suggest is that you make a bullet point list of all your symptoms all on one A4 sheet and print off a copy to give to or leave behind for the rheumatologist. If you have questions then write and print them off too so you remember to ask them.

Personally I usually leave my mobile turned onto record, safely tucked away in my bag, so I can use it later as a reminder of what was said. This is perfectly legitimate as it's your consultation and your health that's being discussed - but feel free to ask if you feel happier to be open. There will be a clinical letter that should sum up what was said otherwise - but it can take a long time to be typed, printed and sent out to your GP, if you are in the UK.

Also dress in loose fitting clothing with undies you don't feel embarrassed by as they may want to examine quite a lot of you and check your responses to cold.

If you have good quality photos of rashes and nail abnormalities, Raynauds attacks and any other visible characterises that is always helpful. Symptoms can come and go, or not obligingly be visible on the day.

Try and stay as calm and collected as you can and be prepared to be asked many questions about your history and symptoms.

I hope it goes really well - please come back and tell us how you got on. Twitchy

[Bajalala in reply to Hidden]

I really enjoyed all the tips you recommended when seeing the rheumy. Can I ask what you meant when you said... "check your responses to cold." What is that all about?

Thanks!

[Hidden in reply to Bajalala]

Thanks 😊.

Raynauds, chest pain, Livedo, syncope etc are what I mean i.e. vascular issues - all relevant to rheumatology - but not always checked for or asked about in my experience. I was caught out once with the not so presentable undies and sat shivering waiting for livedo to make itself known. Also had my lymph nodes examined unexpectedly during one recent appointment and hadn't shaved under my arms for ages -blush! Wasn't mentally prepped for a groin exam either 🙄

[Bajalala in reply to Hidden]

Thanks for clearing that up. That's something I'll have to address if it's not brought up.

And oh my, embarrassing moments for you 🙊 I've learned that lesson one too many times myself, haha and I'm a psycho about those things now 🤗

Take care 👋🏽

[Hidden in reply to Bajalala]

One back for you: The strangely pedantic little rheumy who left me in undies for ten minutes to check for Livedo - made my attending hubby rather cross. He was meant to be note keeping for me but when I asked if he had a few days later he said "oh yes look at my phone notes - but I got distracted by that strange little man leaving you in your undies shivering for so long!" so I looked and all he had written was " she has libido on her knees and feet"?!! 🤣

[Bajalala in reply to Hidden]

Hahahahaha, hilarious! I'd like to see libido on knees & feet 😂, or do I? 🙈

[topsmrp in reply to Hidden]

Is ridged nails an abnormality ? Ps thank you for your reply .

[Hidden in reply to topsmrp]

Depends which way the ridges are? If your doctor thinks you have crest then presumably you have Raynauds which often affects the nail bed, causing horizontal lines and grooves to form as circulation to toes and fingers is affected. If vertical ridges then this is quite normal as we age. Little black vertical lines under nail bed are splinter haemorrhages often associated with Lupus and Crest.

[topsmrp in reply to Hidden]

They're vertical but not with vertical little black lines .

I do have Raynauds.

[Hidden in reply to topsmrp]

Then I would say that the Raynauds is very relevant to list but not the vertical ridges - unless you are young.. but even then vertical ridges are normal. Hope this helps.

[topsmrp in reply to Hidden]

I'm 44 had to think for a moment there !

[Hidden in reply to topsmrp]

Don't bother mentioning the vertical ridges then - I mean 20s or younger! 😏😊

[Paul_Howard Partner LUPUS UK]

Hi topsmrp ,

Not everybody with lupus will necessarily have the characteristic butterfly rash, in fact only about a third of patients develop this.

Good luck when you see the rheumatologist. If you want any advice on preparing for the appointment, we have an article on our blog which you may find helpful - lupusuk.org.uk/getting-the-...

If you need 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...

[topsmrp]

If I have lupus with Crest is it fatal ?

[Paul_Howard Partner LUPUS UK in reply to topsmrp]

I'm afraid I have limited knowledge of CREST syndrome and scleroderma in general, but it is very rare that lupus has fatal consequences these days. Our understanding of how to treat the condition has improved significantly and we now have more treatments available too.

Your doctor will be able to give you a better idea of your prognosis and what treatment plan should be most effective moving forward.

If you need more information about CREST syndrome, I recommend that you contact SRUK at sruk.co.uk/