Not been well recently. The worst headache I've ever had and extreme fatigue / general malaise - plus my lupus rash has grown

Not been well recently. The worst headache I've ever had and extreme fatigue / general malaise - plus my lupus rash has grown

As most of you know, I have SCLE. Diagnosed 2013. This diagnosis was amended to SCLE with Systemic features last year, following a biopsy of the rash at the nap of my neck. Previous dermies had told me that it wasn't anything lupus related and that it was eczema. Doing some google research I found out that actually a rash at the nap of the neck is quite common with SCLE. Typical of my experience with doctors so far. But luckily for me the biopsy results showed skin changes at most levels and outcome was active lupus disease activity. Diagnosis was amended. I have subsequently been put on 3g of MMF a day, max dose, as well as the hydroxy, plus antihistamines and iron supplements. I have used various steroid creams and scalp applications on this rash and at one point my husband told me it had virtually gone and only the biopsy scare was visible - as it turned out, he meant the rash below my hair line wasn't visible! πŸ™ˆ The rash within my hair never went away. So on Friday I asked him to take a photo of it for me - as it had been itchy again and it turns out it is spreading again. It hasn't grown or got worse for a while now. Could this be related to my recent flare? Must be a flare of some description, headache and extreme chronic fatigue and head pains, burning knees etc. I know there aren't many SCLE patients here - we're apparently only 10% of lupus sufferers - but any thoughts appreciated. Thank you.

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  • Purely on the evidence - sounds like a flare to me!

    It never ceases to amaze me how doctors will stand there and swear black is white that a particular sign or symptoms is nothing to do with the disease in question. And then you check in the medical literature and lo and behold - it is well known!

  • I know! I've had this rash on and off since the birth of my daughter, 9 years ago. Went to GPs a coupled of times but just given cream. I stopped dying my hair as it became too painful ( had always dyed it at home myself ). It was then I realised that it wasn't a chemical burn or self inflicted because it started to move around my head. Started on left side and then all right sided. Now spreading across both sides. 😬 xx

  • πŸ™ am so sorry you've still got all this going on! Sounds like a flare to me! Glad you're taking pics of anything visual πŸ‘πŸ‘πŸ‘πŸ‘

    What kind of "itchy" is this rash? E.g. My lupus-related rashes are a weird sore prickly itch that doesn't like being touched so I can't scratch or the rash hurts dreadfully....before my lupus diagnosis was recovered various medics (gps, dermatologist) told me this was dermatitis, but the prescrip topicals they gave me never helped at all...just made the rash hurt even more. It was hellish. Am v much feeling for you...now Rheumatology calls mind small vessel vasculitis type lupus rashes. Lucky me: have less of this on my current lupus meds...

    What topicals have they given you for this? they give me daktacort + betnovate....and now am suspecting I should try Fucibet (a combo of the active steroid ingredient in betnovate + an antibiotic): will ask immunology in April about this. combined topicals help in some cases because fungal & bacterial infection develops with vasculitic rash

    πŸ€πŸ˜˜πŸ€πŸ˜˜πŸ€πŸ˜˜ coco

  • Thank you! Great informative reply! That word rearing its head again - vasculitis! πŸ˜œπŸ™ˆπŸ˜œ xx

  • There it is....e.g. my migraines damp down thanks to the powerful NSAID mefenamic acid 500mg...the info literature warns SLE patients off taking it, but my medics let me take it cause so far nothing else OTC or prescription helps at all (been coping with these migraines from early childhood). Although I ask over & over , no medic has ever even tried to explain WHY in particular mefenamic helps (I only discovered it could help my migraines because I was taking mefenamic for nightmare endometriosis period pain). Well, NOW I am beginning to suspect my migraines are related to my lupus-type vasculitis....and mefenamic just happens to be effective for this type of autoinflammation...but who knows πŸ€·β€β™€οΈπŸ€πŸ˜˜

  • This non medic would say flare, too, Wendy, and sends hugs xxx

  • Hey that looks like my hairline rash! Hmmmm!! I've been diagnosed with facial scleritis & cellulitis. It's horrific when I get attacks. I have SLE maybe I have discoid too???

  • Have you had any skin biopsy's done? This was a punch biopsy. So they took a circle out, of all skin layers and stitched it back up. Might be worth mentioning if yours is similar and you have SLE diagnosis. Best wishes.

  • Was about to have a biopsy on a body rash once but by the time it took for the appointment to come the rash had home! Not been offered another biopsy since.

  • Oh no! Typical! I'm glad I had mine done, as it showed positive for active lupus disease and I got a firmer diagnosis from it. And bloods haven't helped me a lot at all! Only ever had two positive ANA tests and flares don't show in my bloods. So this biopsy was crucial to be taken seriously. Just to add, the biopsy showed the changes caused by lupus through the layers which would presumably be there even if rash wasn't visible on surface of skin? Just a thought. X

  • Wendy I have Granduloma Annular. Had biopsy done to confirm. My neck, shoulders, behind ears broke out in red blisters with Lil crater formations in them. My dermatologist put me on Clobestol gel. It's good stuff. I too had the rash spread half way up in my scalp from neck. Applied gel to fingers, massaged in scalp an the itiching subsided. There is days I itch all over but no rash appears anywhere. I'm sure there is a underlying auto immune issue going on. Take care, God bless!

  • Thanks for your reply. I will need to dig out my biopsy report and look at the wording again. I will make a note of your advice. Thank you.

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