Discoid rash


In yesterday’s post I talked about a “malar rash” (also known as the butterfly rash) which is a very common symptom among lupus patients. There is another rash all to familiar to us “lupies” called a * discoid rash * it is limited to the skin and doesn’t cause the organ damage that sometimes occurs with SLE ( or systemic lupus erythematosus which is what I was diagnosed with in 2014). DLE likely occurs in genetically predisposed individuals but the exact genetic connection has not been determined. It has been suggested that a heat-shock protein is induced in the keratinocyte following UV light exposure or stress. (Which is why I react so harshly to the sun!) So that means no tanning, no river days laying in the hot sun on a tube, no lake days on the boat, no more summertime beach trips. When I am in the sun or extreme heat too long I get physically ill. Breaking out in these rashes, temperature raising to 102+, vomiting, cold sweats… It’s all just lovely.

This rash usually presents itself as a circular shape on the body and is found in only about 20% of SLE patients.

Go figure, I fall into that 20%

Scarring alopecia, which is the loss of hair caused by scarring, often occurs with this issue and is particularly disturbing for some patients. When I was hospitalized, I had multiple spots come up on the back of my head that we thought at first were just soft spots or bed sores from being immobile for so long with my head against a pillow. But turns out lupus strikes again! My hair has started falling out more rapidly, but when I was in and out of the hospital recently this year it was definitely the worst. I got these awful scabs on the back of my scalp and when they came out my hair came out with them. (Which caused scarring alopecia) I truly thought the hair would never grow back.


Three months, lots of women’s Rogaine, and Hair, Skin, and Nails vitamins later…

We have growth!!

I know it may not seem like much to you, but that is okay! I know this is a sign of a more healthy life. Hair growth is good – no matter how little!!


As always, until tomorrow~

All my love, your favorite spoonie

One Comment

  1. Lara Postin

    Keep your head up and we got your back, hair is not everything because you are beautiful inside and out. I am so glad that I met you. And I will follow up with you!!!! Love ya


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