Thirty-one patients with inflammatory and autoimmune diseases reported more than 100 steroid-related toxicities in a qualitative study published in the Journal of Neurological Sciences in 2024, and two toxicity domains, neuropsychiatric and metabolic, were reported by every single one of them.^[1] Weight gain affected 87%. Insomnia struck 77%. Cognitive impairment, what patients call brain fog, hit 71%. These are not late complications or edge cases. They are the routine daily reality for people on long-term steroid therapy, and they almost never make it into the clinical conversation.

That silence has a cost. An estimated 1% of the world's adult population takes oral glucocorticoids long-term^[2] and more than 40% of the total cost of treating those patients traces back to side effects rather than the disease itself.^[3] The human accounting is harder to quantify but far heavier to carry.

The gap between what patients bear and what clinicians see

The qualitative study, led by Howell, Matza, Stone JH, and colleagues at institutions including Massachusetts General Hospital, recruited participants with myasthenia gravis, chronic inflammatory demyelinating polyradiculoneuropathy, systemic lupus erythematosus, and vasculitis. Participants had been taking steroids for an average of 9.9 years. Their mean daily dose at the time of the study was 15.2mg. Most, 87%, required additional medical tests to monitor the impact.^[1]

The toxicities they described span familiar clinical territory: bone fractures, easy bruising, cataracts, infections. But the patient language is what clinicians rarely hear.

"I've had multiple rib fractures, I've had a sternum fracture, I fractured my tailbone, my ankle."

"I went from zero to the Incredible Hulk in about 6 seconds, and I didn't even realize it was happening."

"Absolute easy bruising. I just looked either like a drug addict or a domestic violence victim."

The Glucocorticoid Toxicity Index (GTI) was built to provide clinicians with a quantitative toxicity score and has been validated across more than 25 indications.^[4] Its developers acknowledged that it may not capture the specific aspects of steroid-toxicity that matter most to patients. The qualitative patient-reported outcomes (PROs) study was designed as a foundation for a patient-reported companion measure.

Why shared decision-making is hard in practice

David Jayne, MD, a clinical nephrologist at Addenbrooke's Hospital, Cambridge, put the structural problem plainly:

"Doctors often don't have the time to educate patients to the level required for shared decision-making to be effective."

He describes the physician's proper role as advisory: presenting options and involving patients in decisions rather than making them on their behalf.

"The better informed the patient is, the better their long-term outcomes are. Education is always a good thing, and partnership is always better than being on your own."

That principle has traction in the evidence. A 2024 review in Clinical Infectious Diseases, by Chastain, Spradlin, Ahmad, Henao-Martínez, and colleagues, identified shared decision-making as a pillar of prevention for opportunistic infections in steroid-treated patients. The authors recommended ongoing, open dialogue between patients and clinicians about disease symptoms, comorbidities, prior medications, and individual risk factors. This is exactly the kind of conversation that gets compressed into the margins of a 15-minute appointment.

The barriers Jayne identifies are structural: resource and time constraints, cultural and educational gaps, geography. Specialist nurses who typically spend more time with patients than attending physicians, he suggests, are underused in this role. Digital platforms that function between appointments are another part of the answer.

Kathy Perez, Founder of KP Advocacy and Policy and former Vice President of Global Patient Advocacy and Policy at Argenx, has seen the human consequences of that gap across a 40-year career that includes more than 25 product launches in rare diseases and oncology.

"I've met young mothers who can't lift their children because years of daily steroids have left them osteoporotic," she told Steritas, an IQVIA business.

"Patients tell me: If I could get off steroids, it would be worth the world to me."

The cost perspective adds another dimension. Lili Brillstein, Founder and CEO of BCollaborative and a former leader of the Episodes of Care program at Horizon Blue Cross Blue Shield of New Jersey, frames steroid-toxicity as a failure of the fee-for-service model to see what it is buying.

"In the fee-for-service model, the focus on immediate results often overlooks downstream consequences. It is so important to educate payers and providers about the downstream adverse events and long-term costs associated with steroid use."

Sam at EULAR 2026: what 38,873 users reveal

The platform built to fill that education gap is Steroids and Me, known as Sam. Its origin story is methodical: an international search for existing patient resources, a needs assessment through roundtables with clinicians, patient advocacy leaders, and patients, then construction of a digital companion built around content from more than a dozen leading international clinicians, validated with a 34-member patient panel. Sam was unveiled at EULAR 2024 in Vienna.^[6]

What happened next is the data story that Steritas presented at EULAR 2026 in London.^[5]

At EULAR 2025 in Barcelona, Sam had just over 4,000 users.^[7] By ACR Convergence 2025, five months later, the count had tripled to 12,759.^[8] By the end of April 2026, it stood at 38,873: a tenfold increase in twelve months.^[5] New visitors now arrive at roughly 1,000 per week. Google search drives 70% of them. Sam ranks number one on Google for 350 steroid-related search terms and sits in the top 10 for a further 900.^[5]

The average visitor spends 13 minutes engaging with Sam.^[5] That figure matters for context: typical health information sites hold visitors for around a minute or two. People are not landing on Sam by accident. They are working through it.

The most-read article on the platform, by a wide margin, is "Oops... I missed my steroid dose again," with 12,930 views.^[5] That title is a direct window into the daily anxiety of a patient on long-term steroids, one who goes home after each appointment with questions that were never fully answered. Adherence anxiety and the practicalities of daily life on steroids drive the learning journey.

Registered users go deeper still. They spend 48 times longer on Sam than casual visitors, returning repeatedly to specific content.^[5] Their top reads are "How to talk to your doctor about steroids," then "Taking an active role in your steroid journey with shared decision-making," then "Why we taper." This is not passive consumption. These patients are preparing for clinical conversations.

Martha Stone, CEO of Steritas, an IQVIA business, described how Sam was received at ACR Convergence 2025 this way:

"Practicing physicians are eager to introduce Sam directly to patients. Industry leaders were asking how to incorporate Sam into their patient communications and how to glean patient insights to better understand how to deliver alternatives."

Advocacy partnerships deepen the reach. Patients who arrive through organizations including the Vasculitis Foundation, the Lupus Research Alliance, and the Foundation for Sarcoidosis Research spend an average of 14 minutes on Sam per visit.^[5] Perez has argued that tools like Sam, by generating anonymized real-world data, can turn patients into active partners in dismantling outdated prescribing habits.

"When patient communities understand the science, they know when and how to advocate for themselves," Perez told Steritas.

Sam's trajectory from launch through the ACR 2024 poster session,^[6] through EULAR 2025^[7] and ACR Convergence 2025,^[8] to the EULAR 2026 data presented in London^[5] confirms what the qualitative work by Howell, Matza, and Stone JH described: patients want steroid-toxicity education, and before Sam they largely went without it. The introduction to Sam described patients who felt alone dealing with steroid-toxicity, underinformed, and in some cases, suffering irreversible damage that could have been prevented.

What this means for clinicians and developers

For clinicians, the practical message is that patients, particularly those who have found Sam, arrive better informed than ever before. They have read about tapering. They have rehearsed how to convey their side effects. The clinical conversation can start further along.

For pharmaceutical companies developing steroid-sparing therapies, the engagement profile is a signal of something broader. A patient population that logs 38,873 users and averages 13 minutes of learning time per visit, and that specifically seeks out information on shared decision-making and alternatives to steroids, is not passive. It is a motivated audience/cohort, already asking the question that steroid-sparing development is designed to answer.

Brillstein's value-based care framing applies directly: steroid-toxicity's downstream costs, in fractures, infections, cataracts, and psychiatric harm, accumulate quietly until they erupt in adverse events that are expensive for the whole system. Three tasks connect here: measuring the burden, informing patients, and bringing them into the decision. Sam is built around all three.

References

1. Howell TA, Matza LS, Stone JH, Gelinas D, Stone MN, Rao VTS, Phillips GA. Qualitative interviews to support development of a patient-reported companion measure to the glucocorticoid toxicity index. J Neurol Sci. 2024 Jan 30;458:122907. doi: 10.1016/j.jns.2024.122907.

2. Fardet L, Peterson I, Nazareth I. Prevalence of long-term oral glucocorticoid prescriptions in the UK over the past 20 years. Rheumatol Oxf Engl 2011; 50:1982–1990. https://doi.org/10.1093/rheumatology/ker017

3. Rice JB, White AG, Scarpati LM, Wan G, Nelson WW. Long-term Systemic Corticosteroid Exposure: A Systematic Literature Review. Clin Ther. 2017 Nov;39(11):2216-2229. doi: 10.1016/j.clinthera.2017.09.011. Epub 2017 Oct 19. PMID: 29055500.

4. Miloslavsky EM, Naden RP, Bijlsma JWJ et al. Development of the Glucocorticoid Toxicity Index (GTI) using multicriteria decision analysis. Ann. Rheum. Dis. (2017). 76:543-546. DOI: 10.1136/annrheumdis-2016-210002

5. Stone M, Petri M, Kaminishi K, Papliodis G, McDowell J, Cotton C, Ansari H, Marinaro M, Gelfand J, Stone JH. Steroids and Me (Sam): Development and Validation of a Patient-Centered Digital Platform for Glucocorticoid Education and Shared Decision-Making. EULAR 2026, London, poster POS1388-PARE.

6. Steritas. Sam (Steroids and Me): initial platform results. American College of Rheumatology (ACR) Annual Meeting 2024, poster session.

7. Steritas. A Patient-Focused Program for Using Steroids Wisely. EULAR 2025, Abstract No. 28.

8. Steritas. Sam patient engagement data. ACR Convergence 2025.