It started with a headache. Then there was a feeling of just having no energy at all. The joints in my hand ached more and more. I was having my first “flare” of lupus. It got worse; a lot worse. A rosy rash developed on my hands and arms and then, to my horror, on my face. I developed painful mouth ulcers.
Lupus is a disease that has a lot of varying symptoms. Some people may have the rash. Others don’t. Some experience hair loss. Others don’t. One person may have swollen knees and kidney problems and another may suffer inflammation of the heart. What happens is more than a little scary. Your body’s immune system attacks healthy tissue, causing inflammation, infection and, later, damage to internal organs such as the heart and kidneys. It is typified by extreme fatigue, fever and joint pain. It strikes women much more often than men and black women are particularly at risk.
I was so frightened by the sudden onset of the condition that I went to the ER. They did blood tests and analysis of my urine and, after a physical exam, the doctor said she was pretty certain it was lupus. Fine, I said. How do I get rid of it.
Not that easy, the doctor explained. There is no cure for lupus. Because it can have a wide range of symptoms, it can be hard to diagnose. The best they can do is to help you manage it, she said.
She explained that the lupus attack inflamed tissue and the inflammation and infection could lead to damage to the lungs, kidneys and heart. She put me on Tylenol, as well as an anti-inflammatory called Relafen. These medications would help deal with the inflammation. She also explained that cortisone (steroids) were also used to help with the swelling and rashes. She suggested I talk to my doctor about steroids.
I followed her advice and went to see my doctor. We talked about it for a long time and we decided to keep me on Relafen. And to begin a mild dose of steroids.
My attacks come and go very suddenly, without warning. The medication helps with the symptoms. But because no one knows what causes lupus, there is no “cure”. The best you can do with lupus is manage the symptoms and limit the damage the disease inflicts. Managing the symptoms is key to living with lupus.