Hi all, thank you so much for all of your kind comments over the past week. You have definitely helped keep me sane and stopped me fretting so much.
Been to the Dr's again this morning and she still can't say whether it is or isn't lupus. She said it is more likely to be eczema or dermatitis but if it does turn out to be lupus, she would expect that it would be cutaneous lupus (which I understand is confined to the skin?).
She agreed that the end of September is too long for an anxious mummy to wait to see the specialist and so she is going to see if we can be seen quicker at a different hospital. I should hear something this week.
She said the only way to know for sure if it is lupus would be to biopsy it. This upset me because of the thought of her face being cut. She assured me however that only the tineiest amount would be taken and it would not scar.
I feel reassured that it is not SLE. But then if it is Cutaneous Lupus, the hair thinning period she had and the mouth ulcers wouldn't be typical symptoms of this would they? Also, from what I read, the butterfly rash seems different for cutaneous lupus, it seems more scaly and generally worse looking? I don't know enough about it, only what I have read on Google, and I have banned myself from Google from now on! We'll see how long that lasts!
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Daisy_flower83
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Yes, this is the right time to avoid Google: your GP sounds great, you're as informed as you need to be for the mo..and you're managing this stressful time in a vvvv reasonable way, despite the inevitable anxiety.
Yes, a skin biopsy really should be v discrete.
I'll not comment on cutaneous lupus, because am sure others with more knowledge & experience will
Am just sending you & yours every possible best wish
Looking forward to your next update
🍀
PS is Isla quite fair? Is your family fair too? Am thinking about many of us who are fair & have these skin issues
No: lupus isn't more common in fair people. It's just that fair people can tend to have relatively more reactive skin, in my experience anyway....reactive to things generally: sun, heat, bites etc. and I know quite a few fair children who have grown out of quite worrying skin conditions. This was just another angle that occurred to me
Am thinking that sept 11 is good! You're right: more time to heal on her own! And anyway, by then you'll have had a bit more time to note any patterns, to learn more about what helps minimise these rashes, and to take more photos. Waiting at all is tough...simply can't be easy for you, but if you can continue to dig deep, and do what you can to gather more info, you'll bring more to the consultation which will help the specialist a lot. this way you'll make the most if this appt.
Thank you Barnclown, you are being a great support and have very wise words indeed.
She certainly does have very sensitive skin. She dipped a chip in my dads pot of salad dressing last week while out for lunch. A bit of it dripped on her cheek and right away a raise pink spot appeared! She carried on dipping her chips, so it didn't affect her internally at all, but it certainly reacted with her external skin.
I'm feeling much more at ease than I was this time last week and I think most of that is down to you lovely lot on here and stopping googling! I feel happy now that I've done all I can and its time to put my trust in the specialists. In the meantime, I am keeping positive by the fact isla is completely well in herself and nothing seems to be bothering her at all. Oh to be a child again...!
And, yes, spot on again: collecting first hand info like that re the cause & effect of the salad dressing skin contact is THE way to pass the time constructively until sept 11.
No need for Google etc now that you've made the most of what Google can sensibly give to help get your head around this...and to help you in deciding how to make the most of what the NHS has to offer
They've just got back to me. Apointment has been brought forward slightly to 11th September. I suppose at least it gives her face a good chance of healing on its own if it is going to? Because I really don't like idea of her face being biopsied unless it is absolutely necessary.
Beautiful photo by the way. Felt I just wanted to agree with you on the biopsy. I had one on my thigh about 19 years ago ago to test the nature of a rash on my body when I was pregnant with my second son (I was diagnosed with SLE nearly 25 years ago). They probably weren't bothered about leaving a scar due to its position but it did leave a small white scar. I wouldn't have minded but it didn't resolve the identification of the rash and I was told that (at that time) this was not uncommon. Skin is a sensitive organ and rashes can be caused by a multitude of things - Lupus sounds way down the list in this case. Was more likely to be linked to the pregnancy as it happens.
I'd suggest that you keep taking the photos to show what type of rash it is and how it develops or fades. (Handy to show the doctor if it has gone by the time you get to see a specialist.) Before I was officially diagnosed I spent years waiting for appointments and the most frustrating thing was to be told that they wish they'd been able to take a blood test or seen the rash during the activity. (No one had any idea it was a Lupus flare and I was a puzzle for about four years.) Thankfully research has massively improved diagnosis and treatment since then. I'd guess that everything will be fine but perhaps you could find out if there is a shortcut to seeing someone if the rash suddenly reappears so that diagnosis is easier. For pinpointing allergies I've found it useful to keep diary notes if anything out of the unusual happens.
Thank you redtape. I also had a biopsy on my leg once for a funny looking mark (it was nothing in the end). They told me it would only leave a tiny but the scar stretched in width to about 1cm wide!! So I am very very hesitant to allow a biopsy on her face.
Her rash is funny. It started with a single raised spot on the middle of her nose, then 2 weeks later spread across to her cheeks. It was quite red and angry to begin with. Now the spot it started with has gone but there is a mark where it was. The rest of her rash seems to fluctuate from looking quite angry in a morning to looking like it's almost fading away in the afternoon. It's made up of slightly inflamed skin and pimples.
I know this is 5 years ago but I could have written and posted the exact same thing you have/ are going through that I am with my 9 month old now. She’s just had bloods done to test for lupus but it’s a 4 weeks anxious wait. Did they ever come to any conclusion? The rash is identical to my girls and flares up like you’ve explained.
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