Living with an autoimmune disease: Cutaneous Lupus
I live with an autoimmune disease.
This is the first time I have openly shared about my autoimmune disease beyond close friends and family. I know so many people are dealing with autoimmune disease and today is World Lupus Day-- so it’s the perfect time to open up about it. The mission of World Lupus Day is to bring awareness to the impact that Lupus has on people with the disease around the world.
According to the Mayo Clinic:
Lupus is a systemic autoimmune disease that occurs when your body's immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart, and lungs.
There are different types of lupus. Most people are familiar with the most common type, Systemic Lupus Erythematosus, which is where the immune system attacks the internal organs (lungs heart, kidneys, etc). I have Cutaneous Lupus Erythematosus. With cutaneous lupus, the immune system attacks your external organ, the skin.
Further down in this post I have posted pictures of what cutaneous lupus looks like on my skin when I have a flare up. In the spirit of bringing awareness to cutaneous lupus, here are some questions and answers from my experience.
How long have you had cutaneous lupus?
According to my Rheumatologist, I was likely born with it. The first time I can remember having my first flare was at 19 years old while in college. However, at that time I had no idea what it was.
When were you diagnosed with cutaneous lupus?
In 2015, at age 39. I had been having some very severe flare ups that were debilitating and I was determined to find a doctor who could tell me what was going on with my body. I began searching for dermatologists who were also researchers. I felt a doctor from a research practice would be more knowledgeable of the current medical research on Lupus. I found a dermatologist and when I walked into the exam room, the physician’s assistant saw my lupus rash and immediately said, “That’s cutaneous lupus”. I had no idea what that meant, and I immediately started crying—finally someone knew what this was! A skin biopsy was taken, and test results confirmed the diagnosis of cutaneous lupus. There is no cure for lupus.
What is a lupus flare?
A flare is basically when my immune system goes into overdrive and attacks healthy tissue in my skin. I develop a lupus rash, I usually get a fever, my lymph nodes swell, and I have extreme pain where the rashes appear. I also experience severe joint pain. A flare up can last anywhere from a few days to a week or more. Medication reduces the occurrence and severity of flare ups.
What does it look like when your immune system attacks your skin?
Well, it's not pretty. Here are some photos of what my cutaneous lupus flares look like. While this is the visual aspect of a flare, what you can't see is the pain that accompanies flare ups.
Why did it take so long for you to be diagnosed with cutaneous lupus?
I had been going to doctors throughout the years to figure out what was wrong. I was going to dermatologists, which made sense at the time because the rashes were appearing on my skin. Over and over again I was told that I had eczema, or hives, or atopic dermatitis. I was prescribed so many different creams and medications-- none of which resolved the issue. What I didn't know at the time, is that most dermatologists are not familiar with cutaneous lupus—because it is an autoimmune disease and not a skin disorder, even though it effects the skin (confusing, I know!). The type of doctor that treats lupus is a Rheumatologist. In general, autoimmune diseases are complicated to diagnose because their symptoms mirror the symptoms of many other ailments.
Do you take medication for lupus?
Yes. I take Hydroxychloroquine (Plaquenil) twice a day. If this medication sounds familiar to you, it's probably because this drug has been in the news a lot lately. This medication reduces flares by suppressing the immune system to keep it from attacking my body. Since I’ve been on the medication I do not have as many flare ups. I went from having flares 3 to 4 times a month to 1 to 2 times a year. The medication also reduces the severity of the flares.
I hope this post has enlightened you about living with cutaneous lupus.
Do you have cutaneous lupus or another autoimmune disease? Do you have questions about my experience? Post and share below in the comments section.
Lupus Foundation of America: https://www.lupus.org
World Lupus Federation: https://worldlupusfederation.org
World Lupus Day: https://worldlupusday.org