Stopped dead along one of Northern Virginia’s most notoriously traffic-choked roads one steamy afternoon in June 2019, Grace Brenner pulled out her phone and began hunting for images that resembled her latest weird symptom: beet red ears that were hot to the touch.

For several years Brenner, now 33, had been beset by confusing problems that included persistent soreness in her rib cage that made it impossible to wear a bra, intermittent skin rashes and an inexplicably swollen nose.

While sitting in her office a few weeks earlier, the top of Brenner’s right ear began to hurt. At first, she thought the culprit might be intense sunlight. But closing the blinds didn’t help, and her ear remained crimson-colored even in a dark, air-conditioned room. Within days the redness spread to her left ear.

Whatever it was didn't seem serious; Brenner remembers thinking it might be an allergic reaction, although the trigger was unknown. But what she found as she sat in her car left her feeling badly shaken.

A few weeks later her doctor made the diagnosis that Brenner had fervently hoped would not apply to her. In time, it came to seem less frightening.

“At first it scared the hell out of me,” Brenner said. “And I didn’t factor in all the hard conversations I would have to have with people who love me.”

Is this a heart attack?

In 2012 Brenner, then a second year law student at American University, was in a physical therapy session trying to ease long-standing neck pain when she felt a sudden, crushing sensation in her chest. The right side where her ribs and sternum met were intensely painful, red and swollen.

“It hurt so much I wondered, ‘Is this a heart attack?’ ” she recalled.

The therapist summoned the physical medicine specialist who had been treating Brenner. After taking her vital signs and ruling out a heart attack or injury to her chest, he told her he suspected costochondritis, a common, benign and usually self-limiting condition that causes an inflammation of cartilage and mimics the symptoms of a heart attack. A similar condition, Tietze syndrome, involves swelling in the affected area.

For several years, Brenner said, her rib cage felt so tender she was unable to wear a bra. Prescription strength anti-inflammatory drugs enabled her to function. “I had to be very careful about lifting anything,” she said. “And I had to layer shirts and couldn’t do certain kinds of exercise.”

Each time she cut back on the medication, the pain would flare.

In 2014, after Brenner developed painful swelling in her right hip, the physical medicine specialist told her he suspected lupus, an autoimmune disease that causes inflammation and can affect multiple organ systems, including the skin, joints and heart. He referred her to a rheumatologist.

Autoimmune diseases, in which the body attacks its own tissues and organs, can run in families. Brenner’s was no exception: Both her grandfathers had Type 1 diabetes.

On the basis of her history and the results of blood tests including one for ANA, a test for antinuclear antibodies that can indicate a revved up immune system, the rheumatologist concluded she did have lupus, which can wax and wane unpredictably. Brenner said he also told her the costochondritis or Tietze syndrome — the diagnosis was unclear — appeared to be unrelated, although sometimes costochondritis occurs in patients with autoimmune disorders.

Brenner began taking hydroxychloroquine, an anti-malaria drug that is a mainstay treatment for autoimmune diseases; it became briefly popular during the pandemic before scientists concluded it was ineffective or potentially harmful in preventing or treating the coronavirus.

Within months her health improved.

Burning ears

By 2018, Brenner said, “I was feeling pretty good.” The rib pain had finally disappeared and her lupus seemed to be under control. Brenner, who was seeing a new rheumatologist, stopped taking the hydroxychloroquine and prescription anti-inflammatory drugs.

“I thought, ‘Maybe I’m getting my life back,’ ” she recalled.

The respite lasted about a year.

One morning in April 2019, Brenner woke up with a slight nosebleed and a red, swollen nose. “It was a little hard to breathe,” she said. She saw an otolaryngologist who was puzzled that her nose didn’t appear to be broken and that whatever was wrong seemed to be affecting only cartilage, which provides structure and support for the nose. The doctor advised her to return if her nose looked crooked after the swelling diminished. Two weeks later, her nose looked and felt normal.

“I didn’t think much about it,” Brenner said.

Two months later as she scrolled through her phone, she tried to tamp down the rising panic she felt about what popped up: pictures of people with relapsing polychondritis (RP), a serious, progressive disease in which the body attacks its own cartilage.

The disease, also known as polychondritis, is believed to be autoimmune; it typically targets the ears, which can become floppy, and the nose, which can result in collapsed cartilage requiring reconstructive surgery. In severe cases, the heart, blood vessels or airways can be affected, causing damage that may be fatal.

Polychondritis strikes more women than men, typically between the ages of 20 and 60; it is estimated to affect about 3 in 1 million. There is no cure nor is there a specific diagnostic test; diagnosis is made on the basis of symptoms. Treatment is focused on alleviating attacks, preventing flares and preserving cartilage. As is the case with lupus, RP patients often see multiple specialists to manage various manifestations of their disease.

When Brenner saw Maryland rheumatologist David Wolfe, she recounted the swollen nose episode and showed him pictures of her inflamed ears. Wolfe subsequently confirmed what she feared: She had the hallmark symptoms of RP, along with lupus. It is not uncommon for people with polychondritis to have more than one autoimmune disease, he said.

“It’s sort of like a small fire,” said Wolfe of the initial signs of polychondritis. “It could progress to a bigger fire if you don’t put it out.”

Wolfe recommended that Brenner begin taking methotrexate, a drug that suppresses the immune system and is used to treat some cancers and autoimmune diseases.

Brenner balked. “I did the exact opposite of what you should do, which is nothing. I was scared of the side effects [of the drug]. Basically, it was denial. I thought, ‘Okay, if I take the drug, this becomes real.’ ”

A different crisis

But after a month of fevers, Brenner agreed to take a medication she thought might have fewer side effects. She also joined an online support group, which she found to be both terrifying and helpful.

Weeks later, she wound up in a Northern Virginia hospital in the throes of a hypertensive crisis: Her blood pressure had skyrocketed to 180/120 mm HG and her heart rate was 200, double the upper limit of normal. She was diagnosed with hypertension and sinus tachycardia, an elevated heart rate.

She began seeing a cardiologist and was prescribed medicines to lower her heart rate and blood pressure. She also began taking methotrexate, which has worked well in controlling her lupus and RP.

Wolfe said that her hypertension, which first surfaced in law school, as well as her elevated heart rate appear to be unconnected to her autoimmune diseases and are not typically associated with them. Brenner said that her cardiologist has told her she believes the tachycardia may be related.

So far, she shows no sign of the potentially serious lung or eye problems that can result from polychondritis, Wolfe said. “Assuming methotrexate continues to work, I assume she’ll have an excellent prognosis,” he noted.

It is unclear when Brenner developed RP. An inflamed nose or ears are usually the first indicators. It is possible but unlikely, Wolfe said, that costochondritis was a harbinger.

“RP can manifest in subtle ways,” he said. “I can’t rule it out.”

Brenner said she tries not to worry about what might happen if her disease becomes more severe or if methotrexate stops working, although there are other medications she can try.

She now lives with her parents who moved to the Washington area several years ago. They are in their 70s, and Brenner helps to manage their health care. But having to level with them about the uncertainties surrounding her own health has been difficult.

“They’ve handled it as well as someone can,” she said.

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