By Nicole Shine
Great news! My husband’s dermatomyositis is almost in remission! Dr. Louie, the specialist we saw today at Johns Hopkins, said their tests showed little sign of the disease. I was also heartened to learn that that their Myositis Center treats 400 dermatomyositis patients–the most of any medical center in the U.S. If that seems tiny, consider that a mere 1 in 100,000 people have dermatomyositis, and, of those, Johns Hopkins only accepts the most severe cases. As I’ve written earlier, our rheumatologist at home has only two dermatomyositis patients in his entire practice.
Today, they performed four tests: MRI, CT scan, pulmonary function test, and electromyography. The first two looked for swelling in the muscles (which would indicate the disease is active) and cancer. Dermatomyositis and cancer often go hand in hand, unfortunately. In our case, both tests showed minimal swelling and no tumors. Yay!
Next, they assessed the health of his lungs with a pulmonary function test. They clipped his nose closed, placed what reminded me of a scuba regulator in his mouth, and asked him to take deep breathes, hold his breath, and exhale for five seconds. Five seconds sounds brief, but watching him as the tech counted—one one thousand, two one thousand, three one thousand, and so on—it seemed like an eternity. The test helps the doctors identify interstitial lung disease, which occurs with dermatomyositis. Fortunately, my husband’s lungs were nearly normal, with little sign of the disease.
The fourth test, electromyography, was akin to electrified acupuncture. The technician poked small needles into the muscles of his legs, shoulders, and chest area. Then, they sent mild electric currents through the needles to measure the disease’s activity. They found no active disease in his legs, and only a small amount in his shoulders. Good news, definitely. Here’s what’s odd: my husband regularly feels twinges and soreness in his hamstrings. The doctor explained this by saying that other dermatomyositis patients report similar cramping and tingling—even when the disease is in remission.
We also talked about my husband’s current meds: prednisone, IVIG, methotrexate, and Rituxan. I’ll have more on IVIG in another post. As for methotrexate, he said my husband also should be taking folate to counteract some of the drug’s side effects. He recommended stopping Rituxan because studies have not shown its effectiveness for dermatomyositis. As for prednisone, he said we should definitely begin weaning my husband off of it. Hallelujah! And, he confirmed what I already knew, that prednisone DOES cause depression, mood swings, irritability, and mental fogginess.