"Yes, definitely lupus, lupus erythematosis," said the dermatologist. "This is a sort of auto-allergy but don't worry, it's just your skin. Keep out of the sun and use this cream". Knowing that we were about to go abroad for a couple of years, she added "and don't let those foreign doctors put you on steroids!"
I was baffled. A skin problem most improbably called 'reddish wolf', allergic to myself (psychiatric?), "keep out of the sun", when everybody knows the sun is good for the skin, "just my skin" well of course, what else would it be, I feel fine, "don't take steroids" - why on earth would I, I wasn't a body builder. That's how it began over 32 years ago.
I had gone to the doctor with a sort of sore bump in the middle of one cheek that turned into a red sore rough patch over several weeks, plus a very sore dry upper lip that wouldn't heal. Diagnosis was speedily confirmed by biopsy but it was to be 26 years before I got effective treatment. And it turned out it wasn't 'discoid' at all, but another sort of skin lupus called subacute cutaneous, SCLE.
It seemed to go away, but after the birth of my daughter it came back and spread relentlessly until eventually all my cheeks, lower chin, all round the jaw line and my eyebrows were covered with a mix of very red scaly patches, red wavy circles with white dead looking skin in the middle and blisters from time to time. I had a patch on the v of the neck, my forearms had little red patches and the ears were affected.
Apart from the very unsightly appearance, there was constant iching and soreness with skin flaking off.There was very little information about lupus available in those far off days especially when living abroad but luckily I got enough information to know that I should have regular blood and urine tests and the assurance that the longer it was just the skin, the less likely it was to turn to systemic. A few kind doctors tried to console me by saying I should count myself lucky I didn't have "all that" inside of me. Well yes, but I would rather not have lupus anywhere.
My general health was good, except that sometimes my knee joints were so painful I could hardly walk and the base of my spine was often very stiff and sore, as were my hands Sometimes I felt so tired I could have lay down on the street. All that had nothing to do with the 'just' skin lupus, of course, it was due to poor lifestyle, or so I was told.
None of the various treatments worked (I did refuse steroids!) and I was resigned to my fate.
Then I discovered the worldwide web and studied everything I could find about lupus. I became more and more puzzled about my 'discoid'. It didn't correspond to either the photos or the descriptions I found. I got in touch with a woman with discoid lupus who happened to live near me in NYC. She highly recommended a doctor specialising in 'the skin manifestations of connective tissue diseases', but she had to twist my arm to make an appointment with him because I couldn't face the prospect of seeing yet another doctor and having my hopes dashed again.
He took one look and he told me I didn't have discoid lupus, but a sort called subacute cutaneous.
The addition of 100mgs of Mepacrine added to the 400mgs Plaquenil brought a dramatic improvement: the joint pains went entirely and the skin improved 90%. The fatigue went too. In an attempt to get rid of the skin disease entirely, I tried Thalidomide which was very effective but I had to stop because of peripheral neuropathy, numbness in toes. The Plaquenil was changed to Aralen and some azathioprine added. This brought me into remission leaving residual redness which were then greatly reduced with laser therapy.
I have to keep taking my medicines and always be very careful of UV exposure or it all starts up again. Stress and fatigue also trigger flares. I use 'broad spectrum sun block' indoors and out, winter and summer, and a broad rimmed hat as well as a hood /scarf in UV proof fabric to protect my jaw line.
I am sad that I can't enjoy fine weather, but happy to have at long last got help. I am now active in on-line support in the hope of helping others to get speedy treatment and be spared the misery of 'just discoid' and others sorts of skin lupus.
So, what is this subacute cutaneous?
At the time I was first diagnosed with 'discoid', this particular type of lupus skin had only recently been described, in association with the newly identified anti-Ro antibodies. Now, subacute cutaneous is recognised as one of the five groups of lupus the others being systemic, chronic cutaneous ( mainly discoid type), neonatal and drug induced.
Subacute lesions differ in appearance from those of discoid. They are of two sorts, psoriasis-like with red scaley patches and annular, a bright red wavy ringed sort. They are more often found on the arms and upper body than the face, and they don't scar.
Many people with subacute skin will have enough criteria for an SLE diagnosis, typically low titre ANA and anti-Ro antibodies. A variety of systemic symptoms is possible, what might be called 'mild' lupus, but major organ involvement is rare. Most are very photosensitive.