By Bryan Gilbrech
I was diagnosed at 28 years old in 1996 while I was in the Army. It started with what I call a benign pain in my right buttock that persisted for several months. I did not seek explanation or treatment because it just seemed a part of life as a soldier, and there was no associated injury. This buttock pain progressed into a loss of appetite, muscle pain throughout the body, and fatigue. At this point, I did seek medical assistance, and I was told that I was malnourished. Admittedly, I did not have a normal appetite and that would result in malnourishment, but it still seemed an odd diagnosis. I also received two other diagnoses during this time period: I was told that carrying my wallet in the back pocket of my clothing was the result of the buttock pain and that one of my legs was shorter than the other which would cause the pain.
I was not getting better, and one day I woke up with what we know now as the malar rash on my face and the shawl pattern on my upper chest. When I sought medical treatment, I was told you have a bad case of allergies. I was quite frustrated at this point. I do not recall lab tests being conducted during this initial period so there was no record of muscle inflammation, which was surely flaring during this time period. I do not know who on the medical staff recommended I attend Grand Rounds at the local university hospital, but I credit them with starting me and the Army medical system on the path of discovery and treatment.
It was during the Grand Rounds that one of the civilian physicians thought I had some type of myositis. At this point the Army medical system had a lead, and real momentum began to occur. I had numerous blood tests and results showed very high CK levels. I had a muscle biopsy in order to make a definitive diagnosis, and it was positive for myositis. I was started on high dose prednisone and methotrexate and received a topical cream for the rash. The good news is my body responded well to the treatment, and after approximately a year I was off the prednisone and tapering the methotrexate to a maintenance dose.
After a couple years I searched for an alternative to the methotrexate, because the side effects of fatigue, suppressed thirst, and GI upset were not much fun. I was switched to azathioprine which I tolerated very well with no side effects, but after approximately three years I relapsed. This manifested itself with mostly skin signs like redness of the face and neck, awful itching, muscle weakness, and elevated CK levels. I stared back on prednisone and methotrexate and soon tapered off the prednisone but remained on methotrexate until 2022.
I had been very reluctant to stop the methotrexate for many years because of the relapse I experienced, however in 2022 I decided to give it a try. I was on a low dose of 5mg of methotrexate at that time, so I took the chance. I have had no issues since then and I’m very grateful for that.
I have often wondered if there was a correlation with an outbreak of shingles that I had a couple months prior to the onset of the buttock muscle pain. It seemed an odd situation for a 28-year-old. I still believe today that stress was either the cause or significant contributor to the onset of my dermatomyositis. I participated in Desert Storm, so there is always the possibility that some environmental toxins could also be a contributor. We’ll likely never know for sure.
Bryan Gilbrech is Deputy Chief Information Officer with the US Military Medical Readiness Command in Europe which provides health services support to military personnel and their families.