Advice please on rash: My daughter has a rash on... - LUPUS UK

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Advice please on rash

HelenLo
HelenLo

My daughter has a rash on her face which the GP thinks may be Lupus (she has lots of other symptoms too). She has blood tests on the 27th and he has given her Prednisolone, 20mg a day in the meantime.

The rash moves and goes up and down throughout the day, she says it burns so we have been laying a cold flannel on it which seems to help. My question really is at what point would you go to A&E? (or not) as it is moving round her eye socket and she says her eyeball burns! I don't want to rock up if it's a normal thing to happen with this inflammation, but also i don't want to leave it if it could damage her eye...

I'm so glad we've found this forum as we've put a lot more info together for when we see the rheumatologist, things we would never have imagined were related.

Many thanks, Helen

ps i tried to add photos but if i resize them you wont be able to see it, I've added them to google photos here: photos.app.goo.gl/LiP14NjoK...

18 Replies
oldestnewest

I would call 111 as they can triage appropriately and maybe get you seen by an urgent care centre if needed. They are the qualified professionals who can help you make that decision.

HelenLo
HelenLo
in reply to happytulip

Thank you, we’re in a&e now waiting for Dr 🙂

KayHimm
KayHimm
in reply to HelenLo

Good you are letting the doctors evaluate. That is way too much worry for a mother. Best of luck.

K

eekt
eekt
in reply to HelenLo

Oh my goodness, a very angry rash. Very much hoping that A&E are doing thorough investigations. Wishing you and your lovely daughter well...please do update us xxx

HelenLo
HelenLo
in reply to eekt

Thank you, hopefully we’ll get some answers soon. The rash burnt itself out last time so we’re hoping for the same as I don’t think any of the tablets are helping at the moment (unless a miracle happens overnight) 😥

She has work in the morning and she can’t put makeup on it so people are obviously staring 😢 She’s dreading uni on Monday as she’s been able to cover it up to now xx

eekt
eekt
in reply to HelenLo

It's a terrible situation to be in, but if there's a positive to be found, then at least the rash is a visible sign of organic illness and the road to diagnosis should be swifter than for those who are written off with 'medically unexplained symptoms' etc, the non-sense diagnoses. Be strong together....willing you all the very best xxxx

Hello Helen.... you must be very anxious about your daughter right now. Reading all about Lupus can seem quite scary at first.

My malar rash comes and goes much like you have described. It is hot to the touch and does feel like it is burning at times. It reacts to sunlight so the best advice I can give for now is for your daughter to use a high factor sun cream if she is going outside.

My lupus medication definitely helps with my rash. I am currently on hydroxychloroquine and methotrexate.

You will need to wait for your daughter’s blood work before being given a referral to a rheumatologist. The Rheumy will probably do more blood tests before giving any formal diagnosis and medication. I had to stop taking prednisone when I was first referred to rheumatology because steroids can mask lupus symptoms.

It’s the start of a complicated journey and my best advice is to document everything before going to your Rheumatologist appointment. Make detailed notes of symptoms and take lots of photos. This will really help her doctors get a good understanding of what her condition is and what treatment is required.

If your daughter needs any help or advice this is a great place to come for support and answers. I found the forum invaluable during my diagnosis journey. Everybody is very supportive and super helpful.

Lots of love to your daughter. I hope you will let us know how she is getting on xxx

Thank you so much. Not much joy at A &E, she was given antibiotics alongside the steroids, but honestly I don’t think it’s infected.

She’s been through the mill this last few years, summer was horrific, she started having seizures in Spain and I had to fly out to bring her home (she was on holiday with some friends). She constantly gets hives, something which she is really conscious of as a 20 yr old going out on dates 😅 she’s always tired, always has mouth ulcers, and a low level temp. It wears her down and makes her really tired, but she manages to keep on going. I really hope we can get some answers, but am prepared for a very long drawn out process 😢

Ah Helen, I didn’t like to say that you wouldn’t get much joy at A&E. They really aren’t very good at dealing with us autoimmune patients.

I can totally relate to how self conscious your daughter must feel about her rash. Mine is very visible at times too but it only started to appear in my 30s. I’m in my 40s now and much less concerned with my looks these days. Sometimes I take a kind of weird pride in my rash - it’s like a badge of honour. In my twenties I would have felt very differently.

The fatigue that comes with autoimmune diseases can be very difficult to cope with. You really need to pace yourself and learn to listen to your body. If you haven’t come across Spoon Theory yet then it would be useful to google it.

I started a blog about my lupus earlier this year which your daughter might find helpful to read. You can find it at

icebeaver.co.uk

Please don’t hesitate to ask any questions. Everyone in the group has experience of your situation and are only to happy to help.

Love to you both x

Hello Helen,

Very sorry to hear about this.

Thanks for uploading the photos. Some very angry looking facial rashes indeed.

UK A&E docs and GPs are usually not up to the mark for lupus diagnosis. Sorry to be blunt.

Essential lupus blood tests from the John Hopkins Lupus Centre:

hopkinslupus.org/lupus-test...

This should give you and others useful background.

Lupus flares can take many forms and myriad symptoms.

As a lupus sufferer myself I’m always thinking “What’s next?”

Hope all goes well with further tests and proper treatment from consultant specialist medics can start.

Regards

HelenLo
HelenLo
in reply to Jacky34

Thank you, I’m not very patient so I can imagine this whole process will be very frustrating 😢

I will keep pushing for answers though 😊

F1zz
F1zz
in reply to HelenLo

Once I was referred to a rheumy I got help pretty quickly. It takes a while for meds to kick in. I'm so sorry this is happening to your daughter. I use diflam for my ulcers if that can give her any relief. The spoon theory really helped me so do read it, I need rest days to manage mine(hard when I have kids) but I plan them in. My face normally flares when I need to rest. I normally feel the heat then look at my face and its there. Your daughter obviously has you as her advocate a x having that support will be invaluable. Wishing you luck xxx

I hope she is doing ok. It's is great that you got the photos to show any specialists.

I expect that they have you antibiotics to prevent any potential infection getting into the eye area or 'orbit.' If she were to get an infection of the skin into her orbit and develop peri-orbital cellulitis it would be very painful and need more aggressive treatment.

Sadly some of the comments on here are very true. A&E departments are not well educated on the AI spectrum. I can say this hand on heart because I worked in Emergency Medicine for 15 years and knew very little about lupus and when I became severely unwell at work and was admitted for 3 weeks, it's took them 18 months to discover that I had lupus.

Your daughter is so young, I really hope she gets the supply and clinical help that she needs soon. And keep pushing for those answers!!

Keep us updated.

HelenLo
HelenLo
in reply to happytulip

Her eye does look better today so maybe there was some bacteria where she was touching it 😳

She’s covered in hives again (maybe the antibiotics this time).

Thank you for all your help x

I can really sympathise with your daughter

as she looks so young and I can appreciate how difficult it must be for someone in that age group. I am a 68 year old man and have been dealing with Lupus for longer than I care to remember but your daughter’s rash seems to go a lot deeper towards her eye than mine’s does. It tends to be more across my cheeks and nose and I use a a steel roller which I keep in the fridge to calm the stinging down but as I said your daughter’s rash looks as if it is going close to the corner of her eye . I’m wondering if she is using some sort of facial wipe to cool it down and thus it is taking the the rash closer to her eye.

Not a lot of help I know but it’s just a thought as women do tend to use facial wipes.

Cheers

HelenLo
HelenLo
in reply to Geordie-Y

She used a wet flannel on it to try and cool it down, but she hasn’t put anything else on it.

It started on both sides and across the bridge of her nose, we’re wondering if she introduced some bacteria as she kept touching it.

She’s made a real effort not to touch it since yesterday, no matter how much it burns, and the antibiotics do seem to be helping near the eye 🤞🏻

I’m hoping that with another dose of steroids and another day of antibiotics it won’t be so bad for her tomorrow. Thankfully she has some lovely friends at uni who will have her back if people stare 😆

Hi,

You may find this downloadable booklet helpful,

“A young person’s guide to lupus” (28 pages) available from this website:

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

Regards

HelenLo
HelenLo
in reply to Sue_petal

Thank you 😊

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