“Steroids are often a necessary evil – they are phenomenally beneficial in the short term, but they're terrible in the long term. We probably underestimate the amount of suffering that patients tolerate from steroids.”
Lisa Christopher-Stine, MD MPH is a Professor of Medicine and Neurology at Johns Hopkins University School of Medicine, and the Director and Co-Founder of the Johns Hopkins Myositis Center. Her primary research focus pertains to inflammatory myopathies – specifically describing unique phenotypes, novel therapeutic approaches, and novel disease subsets.
“I have concentrated most of my clinical and research time in the area of inflammatory muscle disease, or myositis. In autoimmune myositis the immune system inappropriately targets one's own skeletal muscles, thinking that they are foreign to the patient. It's an unanticipated inflammatory response in the muscle that causes pain and weakness, predominantly in the trunk muscles.”
She was first attracted to the area as a newly trained fellow, when she would see patients whose clinical phenotypes were only broadly described.
“Some of these patients have very significant interstitial lung disease, and I was struck by the multisystem nature of the disease, the relative newness and lack of understanding. In the early 2000’s, many of the phenotypes were only just on the cusp of being fully described – and that fueled much of my research and clinical interest.
I’ve always tried to be the doctor that I would want to see and I think so much of medicine is understanding that patients come to their appointments with so much fear. I believe it's our job to educate patients but also to make them feel comfortable.“
This approach and dedication to the patient has no doubt helped Dr Christopher-Stine become the principal investigator for a growing cohort of over 3,000 patients that have either confirmed or suspected muscle disease and have agreed to become part of the Johns Hopkins Myositis Research Registry.
“It is incredibly sad that we really only have three, on-label therapies for myositis – one of which is glucocorticoids and – that is the mainstay therapy for these diseases.
A lot of the steroid-sparing agents we prescribe to the patient are off label and in the American system, it is complicated because you have to fight for every therapy you want for the patient. And that can entail patients being stuck on higher doses of steroids than they need.
This is very uncomfortable for a physician where you know there are steroid-sparing options, but you can't always prescribe them.”
Dr Christopher-Stine opines another reason why steroid doses are not reduced faster is that it can take a lot of courage from both the clinician and the patient to successfully taper the steroid dosage.
“Steroids are often a necessary evil – they are phenomenally beneficial in the short term, but they're terrible in the long term. We probably underestimate the amount of suffering that patients tolerate from steroids.
When we see a good clinical response and the patient feels so much better due to their condition coming under control, then it can be hard to focus on the long-term effects of continued steroid therapies.
It is really tough to be brave, and every conversation I have with a patient is based on balancing risks and benefits – how do we balance the risk of a disease flare against the long-term steroid-toxicity? While there is always the potential for a flare, long-term steroid-toxicity is almost inevitable.”
She also believes that finding that balance gets harder and harder as the disease becomes controlled and the steroid doses get lower;
“In our clinic, we’re keenly aware of the side effects and not prescribing 80 milligrams every day for 10 months, but rather trying to get the dose down to between 5 and 10 milligrams a day.
But collectively, I don’t think we’re great at stopping them altogether, even when they are used in combination with another therapeutic agent, either because the patient feels worse because of the taper, or else there is a fear that once the patient is stable you really do not want to rock the boat.”
She believes that while most clinicians are aware of steroid-toxicity, there is a lack of appreciation in the scale of the challenge and research into it.
“My suspicion is that if you interviewed any clinician in the field, they would tell you the same thing, that we're quite aware that steroid toxicity is prevalent and pervasive, but maybe not as appreciated or studied as it should be.
This is where having a standardized and validated measure of steroid-toxicity is so important – not only does it enable you to track individual patients' progression but it gives validation to the scope of the problem that patients, clinicians and healthcare systems face.
In addition, a measure such as the Steritas GTI may allow us to educate patients on the wide-ranging effects of steroid-toxicity while also providing a reminder for us to regularly check all the important toxicity domains such as bone mineral density and lipid levels.”
Dr Christopher-Stine is the Co-Founder and Director of the Johns Hopkins Myositis Center. She is a Professor of Medicine and Neurology and is a longstanding core faculty member of the Johns Hopkins University School of Medicine College Advisory Program. She received her MD from Hahnemann University School of Medicine and attained her Masters of Public Health degree from the Johns Hopkins Bloomberg School of Public Health. Her internship and residency training were completed at MCP Hahnemann University, where she also served as Chief Resident. She pursued her rheumatology fellowship training at Johns Hopkins.
Dr Christopher-Stine serves on the Steritas Scientific Advisory Board (and receives an honorarium for attending an annual meeting).