Underdiagnosed Chronic Autoinflammatory Syndrome
In this Chatting With Betsy podcast, Karen Brandt Onel, MD, chief of pediatric rheumatology at HSS, discussed chronic recurrent multifocal osteomyelitis (CRMO), current treatment options and work being done to refine the approaches for management.
“[CRMO] Chronic recurrent multifocal osteomyelitis or chronic noninfectious osteomyelitis is part of a group of disorders that we call autoinflammatory disorders,” said Dr. Onel. “In autoinflammatory diseases the immune system is just turned on and goes crazy. Those of us who have been hearing about COVID and conversations about cytokine storm - cytokine storm is a little bit of what we’re discussing here. In these kids, for reasons we don’t understand, the immune system turns on and they make a lot of cytokine. They get very inflamed in the bone which is very painful but you can’t see it from the outside. That’s part of the problem. Its invisible because it's inside of the bone. The immune system just turning itself on is causing all of this problem,” she explained.
“The reality is this disease is very heterogeneous. It’s important to think about it because if it’s not on your mind you’re not going to make the diagnosis,” she continued. “If we don’t treat these children what ends up happening is the bones get deformed. And if the bones become deformed as a child the bones will always be deformed. We would say we want to treat these children aggressively because hopefully at some point they’ll either go into remission or we’ll figure out the answer of how we’ll actually make them go into remission or treat them better. We want their bones, joints everything to be perfect – we have all the reason in the world to treat them aggressively and keep them functional.”
While there are different approaches to treatment, Dr. Onel cited, “We don’t know what’s best for any one person. Not yet. That’s part of the reason why we want to get organized. We want to be able to come to an answer on what’s the best way to do that but we can’t unless we work together. That’s why we’re working to put together what we call a registry, where we put all the characteristics of children who have the disease, and who got better with what medicines and what makes sense.”