Lupus or not lupus?... That is the question... - LUPUS UK

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Lupus or not lupus?... That is the question...

Wunder53
Wunder53

Saw the dermatologist today who has ruled out 'malar' rash advising that it is rosacea and he is prescribing a cream to help this. Other than having had a minor bleed on the brain due to a venous anomaly, my heart being slightly enlarged on chest X-Ray on 12th June, a weakly positive specked ana and my anti ds-Dna level being positive (47 in June) I am not 'typically symptomatic' at the moment... I feel like a fraud! On the one hand it's likely I have it, but on the other? .... It's so frustrating! I appreciate I am well at the moment, but can anyone advise on whether this will change? Did anyone else find out they had lupus via blood results prior to 'typical symptoms' and how long before any appeared or got worse? Any input much appreciated 🤔

11 Replies
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Hello Wunder53,

How was your rash diagnosed?

For years I kept getting a reoccurring burning skin rash, but it was never the typical malar rash, infact my forehead gets the full brunt of it too !

I’ve tried every cream going, including athletes foot cream. Unfortunately nothing worked including steroid creams .

Onky thing that does work is oral steroids!

I would advise trying options that are given to you. Trial and error .

Unfortunately because I didn’t make any link between my rash and lupus it has been left for years and now I’m starting to feel things I never had.

So my only advice is stay tuned into your self, maybe make a little diary and note if and what your rash responds too

Xx

Wunder53
Wunder53 in reply to Lisalou19

I get facial redness on cheeks and spots on nose exacerbated by sun, minimal alcohol or stress. Neurologist noted it when looking for cause of my bleed... Asked for lupus testing and bloods came back positive... Dermatologist checked it with microscope thing today and diagnosed rosacea... Will try cream and keep watch out for further lupus symptoms.... As my mum says, got to stop worrying and carry on living! Xx

Lisalou19
Lisalou19 in reply to Wunder53

I can’t drink alcohol, it makes me very ill.

I would also recommend you ask for a skin biopsy on your rash. I didn’t know but if you request it they can’t say no.

See how you respond with the cream.

I’m not sure I’ve read on here before , lupus blood test positive but they have diagnosed something else 😏

There’s no need to worry just stay in tune with yourself

X

AgedCrone
AgedCrone in reply to Wunder53

Good advice from Mum.

Get on with your life...deal with anything when it happens!

I had a busy locum GP decide my malar rash was rosacea and prescribed a cream. I have very delicate, sensitive skin, so I experimented on my leg first. It ripped the skin off. Now I take selfies when the rash is there for the rheumy to see.

Sorry, that's not much help, but a general warning to all to beware busy locum' prescriptions!

Wunder53
Wunder53 in reply to Lupiknits

Thanks Lupiknits, I had photos on my phone but he didn't want to see them.... I'll definitely take some with me next time... I'll see what effect cream has but wasn't too worried about having any as its only worse in the sun or when I'm stressed! It's quite mild. Will ask for biopsy next apt if not satisfied... Will have seen the rheumatologist again before then. Xx

'typically symptomatic'?? - your Rheumy will say there's no such thing.

From the diagnosing guideline: "a person shall be said to have SLE if any 4 or more of the 11 criteria are present"...the criteria are in Table 4: academic.oup.com/rheumatolo...

Note there is one criteria for malar rash and one criteria for discoid rash!

Don't feel a fraud, you're absolutely not! ANA/dsDNA are criteria! Stay strong till Rheumy appt 💪xxx

Wunder53
Wunder53 in reply to eekt

Thanks eekt xx

Chanpreet_Walia
Chanpreet_WaliaAdministrator

Hi Wunder53,

It is important to remember that lupus presents differently in everybody therefore, no two people will share the exact same experience i.e. not every lupus patient will experience a malar rash. It is possible for people with lupus to experience periods of remission whereby their lupus is controlled thus, reducing signs and symptoms. Periods of remission vary from person to person.

Below, I have included some information links which you may find beneficial:

Skin: lupusuk.org.uk/wp-content/u...

Lupus, the heart and lungs: lupusuk.org.uk/wp-content/u...

Thanks for the links Chanpreet. Will discuss the chest X-Ray with consultant at next visit. It was odd that it wasn't picked up on echocardiogram in Dec but 7 months later is showing on X-Ray... The neurologist felt that the bleed on my brain was due to the anomaly and not lupus but as they don't normally bleed, I'm not so sure! He assured me that I'm not at risk of strokes which is positive. Kidney tests and complement levels were all fine in June. I guess, as you say, we are all different and I'm just going down a different path... Xx

Chanpreet_Walia
Chanpreet_WaliaAdministrator in reply to Wunder53

You're welcome, thank you for providing more details. Please keep us updated, wishing you all the best!