I have had Sero positive RA for nearly 20 years, & have suddenly broken out in pinky red blotches all over my torso. They don't hurt or itch, & I don't have the Malar rash on my face.
I'm on Rituximab infusions, & my Rheumatologist discounted that as the cause
So when I saw a Dermotologist & he said it could be DIL, I was shocked to say the least.
I'm having a Biopsy to confirm it is DIL, but that will not show which drug is causing the blotches.
Any experience of this anybody?
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AgedCrone
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Hello there...i’m hoping you get some good replies...
this subject especially interests me because my medics think my infant onset lupus was caused by a combo of familial genetics + 5 months’ daily exposure to the notorious endocrine disrupting artificial oestrogen DES (diethylstilboesterol). The infancy manifestations involved dreadful rashes all over my scalp, torso, arms, face (reddish pink, urticaria-like, desquamative (peeling), ulcerating & crusty...scared my mother big-time)
Hi, BC......Thank you for replying...as you can imagine I am gutted. I have been on RTX since 2016..... no Mtx...no pain killers.....I thought I had found "My" solution to 20 years of YoYoing fron Dmard to Steroid & back again.
To give my rheumatologist his due, I had only had the rash a couple of weeks & only on my tummy when he saw it .....& I only mentioned it in passing as I am prone to the odd rash. Now - two months on it's like a Strawberry birthmark has exploded across my back. But no pain & no itching....the skin surface has not altered, I can't feel a different surface when I touch the rash....but obviously something isn't right.
My Dermatologist queried my previous family history of chronic Hayfever, Exzema, asthma, other allergies & urticaria ..( I only had the Hayfever & urticaria) .....& on examining the rash suggested the DIIL straight away.
I am due my RTX infusion in 5 weeks...so he wants to get the biopsy done quickly so that hopefully we can discount the RTX. I'm only taking one PPI & a Statin.....so unless it's something completely non drug related it shouldn't take too long to detect the culprit........if there is one of course.
Yes, that's what I was diagnosed with, also by a dermatologist, after a massive outbreak of Big Itch (urticaria) all over my body; I had put the lost voice, exhaustion, brain fog, pain, etc, etc down to the aftermath of three car crashes and a badly damaged spine, but he was convinced it was more, even though the first blood test was clear of lupus markers. I've been on powerful painkillers, as well as a cocktail of other drugs to keep my at least partially functional for years (NOT DEAD) and he was certain that's what caused lupus. His persistence combined with an excellent ENT man at Barts was rewarded (if you see what I mean) with a second blood test showing I did have lupus. Of course, since then it's all gone downhill: my surgery got taken over and the new GPs don't believe I have lupus because I didn't have a biopsy (!) and I don't have the malar rash (and typically, I've only ever managed to see locums when I'm flaring!) and my first rheumatologist moved to Scotland and after the clinic screwed up my appointment, I got sacked from the clinic. The new GP said, 'Well, you'll only get given methotrexate again and you don't want that, do you?' That apparently was the end of the discussion. Then the new GP decided I'm one of the opiod addicted (despite having never once taken more than the prescribed dose - which has not risen in 10 years - and on good days taking considerably less, but God forbid a doctor should believe a patient because we all lie!) So now I am back to depression and acute pain, and bad days interspersed with worse weeks. Oh Joy. Sorry; long and not very helpful answer to say *yes*! I pray you find a decent rheumatologist. The only reason I can cope at all is that my first was brilliant, and together with this group taught me a lot about how to cope. That and hydroxychloroquine, which has been a lifesaver for me (although I do wish Plaquenil was back on the menu full-time instead of the generic . . .) Oh, and A&E, which shouldn't be my only option but is, at least until I can find a new GP. It's been a year or longer and I'm still trying . . .
THAT's the strange thing...my rash doesn't itch & it doesn't hurt, & the skin surface is smooth like my normal skin. My GP had no interest at all...glanced at it & said she didn't know what it was...end of! Luckily I got the Dermatology appointment pretty quickly...I think because I had a skin cancer removed a couple of years back so I was seen quite fast.
I'm sorry you ended up with a diagnosis of Lupus....I just hope al my previous blood tests haven't been wrong as they were all clear. You do seem to have had a series of unhelpful doctors too.
Luckily I feel fine & when I first saw the rash I thought I must have spilled something on my skin as there was no odd feeling at all.
I have just had three weeks in hot sunshine, & although I did not sunbathe my arms, legs & face have tanned with normal walking around sun exposure. Prior to that I was stressed out as I had a flood in my house &'had to move out, & only moved back 36 hours before I went away! But the rash didn't get any worse with that stress!
As I said to Barnclown, my (wonderful ) rheumy only saw the beginning of the rash before it really got going...so I can t complain about him. He has kept me sane for the last ten years. ...& he did say if it lasts much longer see your Dermatologist. ....they will consult with each other on my RTX infusion.
So I'll,see what .the biopsy brings in Tuesday...no idea of timescale for the results. I was so gobsmacked by the idea of Lupus, I just drifted out of the Consulting room in a daze ..I didn't even say goodbye!
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