- Prednisone, a steroid, is prescribed to millions of Americans, often to treat chronic inflammation.
- While mood swings are a known side effect, some patients say they experienced much worse.
I was convinced everyone would be better off without me.
It was the spring of 2018, and a few days earlier I had been admitted to the emergency room for a flare-up of vasculitis, a blood-vessel-inflammation disease that causes severe pain, numbness, and breathing issues. Struggling to breathe, I was prescribed 60 milligrams of prednisone, a corticosteroid that would reduce the inflammation.
The drug worked, but within days I fell into such a severe depression that I returned to the same emergency room — because it was the only way I knew I would not be at risk of harming myself. I was ultimately hospitalized for a week to deal with the psychiatric symptoms, which were unrelated to my vasculitis.
My memory of this period is unclear, due to the sudden insomnia the prednisone caused. Before my diagnosis in January 2018, my vasculitis had been dismissed as anxiety, and the resulting medical trauma made it hard to talk to my rheumatologist and pain psychologist about how I was feeling.
As I tapered off the prednisone, my depressive symptoms decreased. At 10 mg of the drug, I began to feel like myself again.
Years later, I now believe that the high dose of prednisone was most likely the cause of my depression and suicidal ideation; the intrusive thoughts that slipped away as I tapered off the drug have never returned. My rheumatologists have agreed, and they now keep me off high doses of prednisone to protect my mental health.
Since then, I've learned that my case is not unique. I've spoken with four other patients who experienced sudden, severe psychiatric side effects after taking high doses of prednisone.
While prednisone is known to have mental-health side effects, these patients — and some doctors — say they can be more serious than most doctors acknowledge, especially for such a commonly prescribed drug. These aren't just "mood swings": They're serious crises leading to weeks of insomnia, manic episodes, suicidality, and mental-illness-related hospitalizations.
Dr. Paul S. Nestadt, a psychiatrist and suicide epidemiologist at Johns Hopkins, said ending up in the psychiatric ward after being on high-dose prednisone was "not an uncommon experience."
"The problem is common enough that when a patient is admitted to my unit with psychiatric symptoms that they have not experienced before, one of the first things I do is check the medication list for prednisone and other common culprits," he said.
Prednisone has been prescribed for decades to manage autoimmune diseases and inflammatory bowel disease
Prednisone is often used to manage flare-ups for people who live with chronic inflammatory conditions like inflammatory bowel disease, lupus, and rheumatoid arthritis. The drug works by lowering the activity of the immune system, reducing inflammation and swelling.
While prednisone is commonly referred to as a steroid, it's different from anabolic steroids, which raise testosterone levels in the body to promote increased muscle mass and improve athletic performance.
Prednisone, which has been in use in the US since 1955, is a commonly prescribed drug, with an estimated 11 million patients receiving it in 2019. That number has probably gone up during the coronavirus pandemic, as the drug is used to manage some COVID-19 complications.
While prednisone can provide significant relief from inflammation, it comes with notable side effects, including high blood pressure, fluid retention, and weight gain, especially in the face.
The drug isn't contraindicated for people with diagnosed mental illness, as research hasn't found clear evidence that they're at a higher risk of developing profound psychiatric symptoms than those without a diagnosis. Doctors tell patients they may feel "a little out of it," as mine told me, or experience some mood swings.
But according to Dr. Lorrin Koran, a researcher who has studied the topic, mental-health side effects of prednisone actually occur at "a troubling frequency." Koran, an emeritus professor of psychiatry and behavioral sciences at Stanford University, coauthored a 2011 paper that concluded psychiatric side effects of corticosteroids were "not rare."
For example, patients have reported experiencing euphoric mania, "like spending too much money or driving fast or engaging in behaviors that are not typical of them," Koran said. Alternatively, some said they'd experienced depression, or a combination of mania and depression.
Koran said it would be inaccurate for any doctor to dismiss the mental-health risks of prednisone as "low." He cited a 2013 review article in Rheumatology International that draws on a half-century of research, arguing that symptoms could be severe.
"Physicians are not always as open to considering new possibilities or unusual possibilities," Koran said. "Some patients I talked to reported they had difficulty convincing their treating physicians that their new symptoms could be related to high-dose prednisone steroid."
Patients say prednisone caused manic episodes, nonstop crying, and trips to the psychiatric ER
Samantha Reid, a director of digital engagement at a policy institute in Washington, DC, believes an 80 mg dose of prednisone for her Crohn's disease caused her to experience mania for the first time in 2016. She had previously experienced anxiety and depression, she said, but this was new.
Reid said the only side effect her doctor had warned her about was facial swelling, so she wasn't prepared for the insomnia prednisone caused, which intensified her mania. "I was sleeping probably like four hours a night, and then just like getting up and like boom, boom, boom through the day," she said.
When her dosage was decreased, the mania began to dissipate, but she continued to have depressive episodes, not speaking with others for weeks at a time. While Reid's doctor tapered her off the higher dose for reasons relating to her physical health, she noticed that once she stopped taking prednisone, the mania went away.
In conversations with Insider, some patients who experienced mental-health crises while on prednisone said their doctors warned them they "may feel different" while on the drug. But none were warned by physicians about the possibility of adverse side effects like mania and paranoia. This was despite the fact that several already had a diagnosed mental illness.
That includes Rylie Cooper, a digital director outside Philadelphia who has borderline personality disorder. When they were prescribed 50 mg of prednisone for their Crohn's disease in 2021, they weren't told about the possibility they might experience more severe mental-illness symptoms.
Immediately after starting prednisone, Cooper had a manic episode and began experiencing what they call "brain zoomies." Insomnia kept them mentally exhausted, but their mania and paranoia pushed their mind to overthink nonstop. They felt increasingly unable to manage their borderline personality disorder and ultimately ruined a close personal relationship with constant, impulsive attempts at getting attention, including sending selfies, paragraphs-long texts and frequent calls.
Cooper has since weaned off of prednisone; they said they never told their doctor about their symptoms because they didn't think they would be believed.
When she was prescribed prednisone for her chronic hives in 2018, Sararosa Davies, a podcast producer who has mast cell activation syndrome, expressed concerns about taking the drug. Davies has bipolar disorder, and her mother, who is a nurse with specialized psychiatric training, was concerned that it might worsen her symptoms.
The doctor brushed off Davies' concerns, she said, and the results were disastrous. She was admitted to a psychiatric emergency room for a night. Afterward, she said, she experienced her worst depressive episode to date and couldn't get out of bed.
Nestadt, the Johns Hopkins psychiatrist, said it wasn't atypical for doctors to ignore a patient's existing mental illness when deciding whether to prescribe prednisone. "I have seen patients with psych comorbidities given steroids without documentation of them being told the risks involved," he said.
Even those without comorbidities can be affected. Gemma Cooper-Novack, who works in academia in New York state, had no history of mental illness when she was given prednisone for the first time in 2009, after she was found to have ulcerative colitis.
"Prednisone was just presented to me as the next logical line of treatment," she said, adding that her doctor said nothing about the possibility of mental-health side effects.
Cooper-Novack soon began to experience insomnia and sudden, out-of-control bouts of crying. She kept up with her master's program despite the challenges, feeling trapped on a constant, draining mood roller coaster.
At the time, Cooper-Novack attributed her severe mood disruptions to the emotional toll of adjusting to life with a chronic illness, but she now believes the drug played a role. As soon as she weaned off prednisone, she said, the side effects subsided.
During her time on prednisone, "either it knocked me out fully, or I was awake at 2 in the morning, wide awake, and couldn't do anything about it," Cooper-Novack said. "The impact on the sleep patterns exacerbated whatever it was doing in the first place."
Some diseases require higher doses of prednisone, which are linked to higher psychiatric risks
Prednisone doses can vary based on a patient's health condition. According to the American College of Rheumatology, people with rheumatoid arthritis are often prescribed 5 to 10 mg of prednisone, whereas people with lupus and vasculitis can receive doses 16 times as high, at 60 to 80 mg.
Studies have found that the higher the dose of prednisone, the higher the chance that those in the studies would experience adverse psychiatric side effects. Some medical groups and governmental agencies, including the UK's National Health Service, are investigating whether doctors are prescribing corticosteroids too often or at higher doses than patients need.
Dr. Kristen Young, a rheumatologist in Arizona, said she'd seen both patients with preexisting mental illness and those without it experience adverse psychiatric side effects on doses as low as 10 mg. In some older patients who take prednisone, Young said, she's diagnosed "steroid dementia," most likely abetted by insomnia. It often reverses when they go off the drug.
But fighting for a lower dose of prednisone, or for a new medication, can be exhausting for people who often have already had to spend years fighting for a diagnosis — or for worsening symptoms to be treated. Young said that's common in the world of chronic inflammatory disorders.
"Every person getting to a diagnosis where they end up on high-dose steroids usually has been through it and been through the mill," Young said.
Alternatives to prednisone exist, but they're limited and disease-specific
Even though prednisone is more than six decades old, alternative drugs for people in active flare-ups of chronic health conditions are only slowly emerging. Most are disease-specific.
The past five years have seen some major advancements, including the approval of the vasculitis drug avacopan, and research into alternatives to prednisone for Duchenne muscular dystrophy and severe asthma.
But with the journey from drug discovery to pharmacy shelves now taking an average of 10 years in the US, it's a roll of the dice as to which patients will receive alternative options first.
Getting patients on less-risky drugs also requires diagnosing their conditions more quickly in the first place, said Dr. Alfred Kim, a rheumatologist at Washington University in St. Louis who specializes in treating patients with lupus and vasculitis.
By diagnosing and treating patients early in their disease course, doctors can reduce their chances of experiencing the severe, uncontrolled bouts of inflammation that require high-dose prednisone to treat. "There's pressure amongst lupus researchers and vasculitis researchers to be able to figure that out, so that a diagnosis is not 5 1/2 years, but more like five days," Kim said.
Doctors and patients are seeking more attention to mental health
Getting doctors to acknowledge that prednisone might affect patients' mental health can be difficult, especially for marginalized groups who are already used to having their chronic illnesses dismissed as manifestations of anxiety and depression.
Kim said it was crucial that doctors take mental health into consideration when evaluating a patient's progress on prednisone. He said side effects that might seem minor on paper, like mood swings, could still affect patients' lives.
"Part of that process is going to be a transparent discussion about risks and benefits," Kim said. "It's well beyond the major risk factors; it is also talking about the less-frequent ones. And even the most frequent ones can also be severe."
Young says patients who experience psychiatric side effects from the drug should keep taking it and contact their prescribing physician immediately. Suddenly stopping prednisone without medical supervision can cause severe, sometimes life-threatening side effects, according to the American College of Rheumatology.
In scenarios in which prednisone is the only option to battle a flare-up, many of the doctors and patients interviewed by Insider say the drug should come with mental-health treatment and counseling.
For those who've already had mental illness linked to prednisone, Young advised bringing a psychiatrist onto the person's care team to prescribe antipsychotic or antianxiety medication if needed.
Kim and Young agree that any patient who thinks their doctor is dismissing their health concerns or symptoms should seek a second opinion.
"If you don't have somebody that you really, really trust taking care of you," Young said, "it's probably time to move on to another person."