Can ANYONE shed any light on this list of symptoms, GP suspects lupus but we aren’t convinced!

[bebski]

It’s the Petachie non blanching rash which is particularly worrying and how pale she is…

Symptoms:

• Petachie non blanching rash has been present intermittently on body and inside mouth since end of Dec 2023 - sometimes accompanies fever, sometimes not with a fever
• Red rash on her cheeks coming for months/last year or more on and off, doesn’t go over her nose and isn’t in folds around nose. Recent Hot summer mornings it’s bad, cooler mornings seems fine, after a meltdown it can sometimes come up (not always), when she’s had viral infections it comes sometimes up (not always)
• Diagnosed Pityriasis/tinea versicolor 13th June and diagnosed again 27th Aug
• End of dec/start of Jan 2024 period of 6 weeks with low grade fever, 20th Aug low grade fever started again and remains
• Redness noticeable on arms and legs after being out in the sun too (not sun burn) during periods that the redness on her cheeks was also visible
• Occasional Joint pain (doesn’t limit activities and seems very fleeting)
• Occasional tummy pain (doesn’t limit activities and seems very fleeting)
• Can see and feel swollen lymph node on her right side of groin and can feel on her neck during what seemed like a flare up period of red cheeks
• Her grandad (maternal side) has suspected lupus/roseca
• Her great grandma (maternal side) confirmed rheumatoid arthritis
• Low iron (but does have restricted diet)
• Fingers and toes turn purple in cold weather/water
• chilblains in winter
• At the moment seems very pale with huge under eye bags despite good sleep
• Has had 2 full blood tests this year and all was clear (last one taken 31st Aug)
• Been referred to dermatology and rheumatology (GP suspects lupus but I’m unsure as sun doesn’t always bring out red cheeks, only some of the time)
• Eating and drinking fine (for her), pooing and weeing fine, seems more tired than normal but not limiting activities and isn’t sleeping more than normal

Is this a child?

This is very lupus like

Yes my 6 year old daughter

Yes our 6 year old daughter

I would say lupus too.

what makes you think it isn’t?

The redness on her cheeks doesn’t go over her nose like the typical butterfly rash (although I appreciate you can have lupus and not even have the butterfly rash at all)

and the fact she is sometimes fine in the sun and only sometimes does it being out the red face

the Petachie non blanching rash doesn’t seem to be a characteristic of lupus from what I can tell, so wondering if it’s something else …

Are you really going to go along with a bunch of strangers advice over your doctor?

we’re very much listening to the doc hence the referral to rheumatology but in the meantime trying to speak with people who might have experienced similar to any of the list of symptoms in case we’re missing something.

doctors missed my eldest’s meningitis

doctors also missed my youngest’s allergies, tongue tie and torticollis - it was thanks to my research and speaking with parents online that helped me gather evidence and advice to return and push back thus resulting in diagnosises which otherwise wouldn’t have been achieved.

so yes, happy to listen to docs but also happy to listen to parents who might have experienced similar and can provide something helpful.

I have Lupus. I do not have the typical butterfly shape rash on my face. I get blisters on my face and neck in Spring or Autumn, even under cloud, but not in Summer, even in full sun, but i do not get a red rash, just itchy blisters.

I was diagnosed via a skin biopsy when I reacted very badly to a drug. Lupus is an autoimmune condition and these can be genetically inherited (not always but there is a higher chance).

So sorry you’ve got to experience all this, thanks for sharing your experience

Are any of the other list of symptoms something you experience?

tx

Have to agree. Sounds like Lupus. Worth ruling it out.

I was diagnosed with Fibro for many years but they now think it was actually Lupus. Certain symptoms overlap such as pain, low grade fever, tiredness, sensitivity to light, sound and sun etc but it wasn't considered as I didn't have that rash.

As with all illnesses the symptoms will be different for each person, as will the severity of each symptom, which will change over the years. The Rheumatologist is really the only one who can say if it is or isn't, and I see your DD has been referred to one so that's good news at least.

The rheumatologist will give you a definitive answer. It sounds like Lupus.

Did GP do an ANA blood test, OP? He/she really should have.

Thanks for your message.

I wasn’t aware the GP could do one, my daughter has to go to a special children’s hospital for her bloods as she is autistic and requires extra measures.

I assumed the ana blood test could only be done by the rheumatologist, have I got that wrong?

It can be done by both. It’s ok if an ANA wasn’t done by the GP because the rheumatologist will do it anyway (among other tests). Plus rheumatology will have more trustworthy results, in all honesty. Their results will be Gospel.

I asked my GP for one years ago because my dad and his sister had Lupus. All of my symptoms presented as Lupus-like. So I suggested it to my GP and fortunately he listened and ordered one.

That all said, you’re plugged into rheumatology and you’ll get the ANA and the rest! You’ll be in good hands.
Your daughter is so brave! And she’s only 6. 🏆
My 14 year old has to get her thyroid checked routinely and the bloodwork is an event, to say the least. There is no amount of numbing cream, gentle coaxing, measures put in place that can ease her mind. That she does the bloodwork in the end is a small miracle! And she’s 14, like I said. So, huge bravery medals for your DD!

I wish your DD good health and lots of support as she navigates this difficult time alongside you. It’s really tough for you, I know, but soon you’ll have a soft landing and lots of answers and support. It’s the waiting that’s hard.
Low stress and a very peaceful, quiet life helped my dad, his sister, and now me. I think the less stress and the more balanced and managed and predictable everyday life can be, the better. I hardly have flares. But when I’m stressed and anxious, everything seizes up.

I have Lupus and have never been ANA positive, diagnosed by UV tests at photobiology.

I had the petachie rash before I was treated and I have the butterfly rash, sling with other rashes. Also have Raynauds.

I completely understand where you're coming from regarding GPs missing things and you wanting to get personal experiences, as it took a long time for me to get diagnosed. Get a second opinion and get referred to rheumatology.

Thank you so much for this!

so glad you finally got your diagnosis.

I’ve read on the lupus support groups that you won’t get a diagnosis if the rash disappears with a few hours, it needs to stay for days in order for it to be lupus.

is that something you’ve heard too?

@bebski sorry for the late reply.

You're welcome and thank you.

I suppose it's difficult to diagnose it through a biopsy if nothing is there at the time. Luckily my rash was there but my biopsy came out inconclusive.

There are other ways to diagnose, there's also a certain criteria, if you tick so many out of 11 I think, may have changed as my diagnosis was years ago now.

Definitely get referred. Any questions feel free to ask X

Plus mine never goes away completely, sometimes it's well controlled but I'm never without a mark on my face. My skin is extra extra sensitive too since being on immunosuppressants.