My first experience with Lupus was terrifying. It began with a high fever (104 degrees) and semi-paralysis. I progressed to the point I could not even lift a glass to take a fever reducer. I couldn’t care for my hygiene and grooming needs. I couldn’t even hold my head up very long to watch TV, and I couldn’t hold even a paperback book for reading. So I was relegated to sitting in a lounge chair and crying.
My Mysterious Symptoms
I had been having severe joint and muscle pains for some time, which I later found out was the very beginning of my Lupus. My doctor recommended a swimming pool to allow me to exercise comfortably. He, and I, believed I was suffering from arthritis.
We installed an above ground swimming pool. I used it every evening after work, and on weekends. One weekend I tried a new sunscreen, and broke out in a very itchy rash on various arts of my body as a result. At least, that is what I thought.
I began to have an extreme muscle weakness in areas where the rash was. It even progressed to the point I couldn’t use those muscles. I suffered for several weeks, then began to run a fever 104 degrees and above. I went to the doctor and got treatment for strep throat.
The antibiotic did not help, and I progressed to constant fever and paralysis. At first, the doctor believed I might be having a reaction to the strep bacteria. But, nothing seemed to help my condition. One night, stuck in a chair, unable to get myself out of it, with a raging fever of 105 degrees, I demanded a trip to the ER. I was admitted to the hospital that night.
The Nightmare of Treatment
What followed was a true nightmare, one which I am still suffering from, thirty years later. I spent six weeks in the hospital, undergoing a myriad of tests. At one point in the six weeks, my kidneys shut down and my liver malfunctioned. I was told that they did not know what was wrong and could not predict an outcome. I was told to call my family in and say my goodbyes.
A doctor came in the next morning, stating that he didn’t know what was wrong, but would like to try a bolus treatment of steroids plus an IV vitamin concoction. I immediately got better, kidneys and liver functions became normal, and I felt terrific.
Further testing was done for Lupus, which the doctors felt I probably had. Most tests showed either borderline normal or near normal results, though. The doctors still decided I had Lupus and began to treat me as such.
I was given extremely high doses of Predizone (310 mg daily). I seemed to get better, but the steroid was damaging my body. The doctors tried weaning me down, but I would immediately flare up again. They tried gold treatments, which I had a severe allergic reaction to. They then tried Penicillinamine. Again, a severe allergic reaction. I was then given chemotherapy treatments. Even given two types at the same time, I did not improve.
I was put back on the steroids, which I took for three years. It destroyed my body. I developed severe diabetes, liver dysfunction, and chronic pancreatitis. The combination of medicines did cause a remission in the Lupus, but caused untold damage to my body. My quality of life is severely hampered as a result.
Become Personally Involved in Your Treatment
The main thing that is important to those suffering from Lupus, or any catastrophic illness, is to be personally involved in your care. I felt so ill I didn’t think to question the treatments my doctors suggested. I was not even told about the devastating side effects of them. I knew chemotherapy had bad side effects, but did not realize it would last the rest of my life. I made decisions for treatment based on what my doctors suggested, without having sufficient information to make an informed decision.
No more. I now question any decision a doctor makes for me. A patient need to ask vital questions. These questions include:
- What are the potential risks
- What alternatives are available
- What happens if the condition is left untreated