Meet Macy

In April 2025, at the end of her senior year, Macy began having tongue swelling and extreme tongue pain. She was absolutely miserable. She made multiple visits to her PCP, Urgent Care, and the ER. She had been taking max doses of ibuprofen around the clock to control her pain. Tuesday, June 3, 2025 she was the worst she had been. 

The swelling and pain was affecting her ability to breathe. 

She was admitted to JW Ruby Memorial in Morgantown, West Virginia where they began an extensive work up to figure out what was going on. Hundreds of scans, blood tests, and a tongue biopsy were obtained., By Friday, June 6 she noticed generalized muscle weakness and soreness but it was assumed it was from laying in a hospital bed for days. This pain and weakness quickly escalated to excruciating pain in her bilateral lower legs, bilateral lower arms, and jaw. She rapidly lost dorsiflexion in both feet and was unable to stand or walk. Extensive testing continued, including a lumbar puncture, and still no answers, while Macy’s symptoms continue to progress. Her inflammatory markers were extremely high and rising, her CK was very elevated, and she was in a lot of pain. She also started to lose some movement in her left hand. A muscle MRI showed severe inflammation in the muscle. With still no answers, we requested a transfer of care to Nationwide Children’s and she was transferred several days later. 

Upon arrival to Columbus, we still had no answers. She remained fevered, tachycardic, and unable to move herself in the bed. She was lethargic and vomiting. At Nationwide Children's, she had an electromyography (EMG) that showed “sluggish nerves”. She had a muscle biopsy of her calf. Her tongue biopsy from WV resulted and wasn’t very conclusive, but did show inflammation in the muscle. Her MRA scan showed the extent of the disease, and she had mild pleural and pericardial effusions. 

She also had a very elevated fecal calprotectin level, so GI performed an upper and lower scope to measure the extent that PAN was affecting her GI tract. The findings showed increased crypt apoptosis and ulcerations. 

Her rheumatologist, Dr. Melissa Argraves, called shortly after her calf muscle biopsy and said she had an update from the pathologist. They said they were seeing lymphocytic vasculitis in the muscle and necrosis in the medium sized vessels in the biopsy. 

After two months of excruciating pain with no answers, multiple PCP, urgent care, and Emergency Room visits, and weeks in the hospital, we were given an official diagnosis: polyarteritis nodosa (PAN).

Macy’s rheumatologist, Dr. Elizabeth Murray describes PAN as a rare, systemic necrotizing vasculitis affecting medium-sized arteries, which can result in multisystem involvement. There is currently no cure for PAN. 

Macy began pulse steroid therapy and transitioned to high dose steroids orally. She began immunosuppressive therapy with methotrexate injections and a host of other medications daily that she continues to take to achieve and maintain remission. 

She still follows with her specialists regularly and is doing very well.

We cannot thank the staff at NCH, particularly rheumatologists Dr. Melissa Argraves and Dr. Elizabeth Murray, as well as the staff on H10B enough for the incredible care they gave to Macy. Thanks to them, Macy is healthy enough to be enrolled in nursing school and living her life.