Nadine Saad, MD, Pediatric Rheumatologist at Michigan Medicine talks about CRMO.
Interview conducted by Ivanhoe Broadcast News in 2024.
What is CRMO?
Saad: CRMO stands for Chronic Recurrent Multifocal Osteomyelitis. It’s an inflammatory bone condition, in which a person’s own immune system attacks normal healthy bone.
What does it do for somebody who has it? If it’s attacking their bones, what actually happens?
Saad: So what’s happening is, we have immune cells that are dysregulated or working inappropriately, and those attack normal healthy cells, and that causes pain.
Who typically is subject to this? Where do you typically see this condition? Is it an autoimmune condition?
Saad: Sure, it’s considered auto inflammatory and we see it in all age ranges, and it can affect boys and girls.
Is it typically in younger kids? What is the span of the condition?
Saad: We can see it in all ages. I have seen it down to like two or three year olds, up to teenagers as well.
And is there a cure for it?
Saad: We don’t have a cure, but we do have treatment that can help resolve the symptoms.
How do you treat something like this?
Saad: So we use medications that help to lower or stop the inflammatory process that’s coming from the immune system.
What exactly happens to a kid that has this?
Saad: So that’s coming from the immune system attacking the bones, and that causes just like an inflammatory process that’s causing the lesions in the bone, and then the medications that we use help to stop or prevent that inflammation from continuing, and also to help remove that inflammation to allow the bones to heal.
Does CRMO only attack the bones or does it have other ways that it manifests itself?
Saad: It’s in the bones only.
Is it typically in a certain area of the body?
Saad: So it can occur in the long bones. So we’ll think of the shins or like in the arms as well.
How painful is this for the kids or how hard is it for them to live with this?
Saad: It can really range from child to child. In some children it’s very mild, whereas in others it’s very severe and debilitating, and it prevents them from going to school or participating in sports.
When you see someone like Jet who’s out there figure skating, is that unusual typically in a case like this?
Saad: I think Jet is fantastic and she has been on medications that’s helped her to treat her CRMO, that’s allowed her to participate and be an excellent figure skater.
How does the progression of treatment go? How does it work? They get bone scans, they get treatment, because I know hers, sometimes it can go away, is that true?
Saad: So to make the diagnosis, we rely on imaging so MRIs and what we’ll do is we’ll do a whole body MRI to pick up any bone spots that may be in bones that we didn’t know that they were there before. So over time, we repeat the MRI to make sure the spots are getting better.
Is it typical that this somehow resolves with treatment or could this go into adulthood, too?
Saad: It can go into early adulthood. In a lot of cases, it is something that we can treat in children and then it goes away, but it can last longer and it’s very dependent on the person.
What is the treatment? How do you come up with a protocol for someone?
Saad: There are a lot of different treatments that we can use. Sometimes we start with what we call NSAIDs, which is the category of ibuprofen and naproxen. Other kids, they need stronger medications that help to lower their immune system, and those are things if you’ve heard of methotrexate or TNF inhibitors.
What are those immunotherapies?
Saad: They are immunomodulators. So yes they change how the immune system is working, and that helps to lower the inflammation.
If those don’t work or if the lesions keep coming back, then what happens? Is that where it gets to be a more difficult case?
Saad: Yes and sometimes we have to use the medications in combination, and even further medications that we have. There are also immunomodulatory that help to treat the bones.
For other parents of kids who have this condition, what is the hope for them for the future?
Saad: Well, our hope is that we get to a point where we can make an early diagnosis of CRMO, because we know the earlier we treat it, the better the outcomes and then our hope is that we get to a point where we can treat all the spots in the bones, to get to a point where the children don’t have any pain, and that no one would know they have CRMO unless they told someone.
The lesions, do the patients typically have a lot of lesions or just a few?
Saad: Sure. It’s very variable. Some I’ve seen have just one or two, some can have five or more.
Do they come and go or once it goes, it’s gone, but new ones can form?
Saad: Again, that’s also variable. In some children, there’s one spot, and it’s treated and it goes away. Nothing ever happens again. In some children, there’s that spot, we treat it, but then it comes back, and it’s very hard to predict what’s going to happen.
How is it even discovered, what are the symptoms, typically, for the patients?
Saad: The main symptom is pain, and that can be over the bones and sometimes we’ll say swelling over the area too, but pain is very much the main symptom that we’re looking for.
What should parents know that we need to pursue this more versus growing pains or, you know, just an injury that will heal itself?
Saad: I think any pain that’s not getting better or that from day to day is getting worse is something that should be looked into further.
Are there experimental treatments for this as well?
Saad: So currently, the treatments that we use are actually not FDA approved and so pediatric rheumatologists all over the country are working together to study CRMO in more detail to best determine which treatments are better for these children. And then hopefully one day to get to the point where we do have FDA approved medications.
Just explain what the pediatric hematology population is hoping for.
Saad: So currently the pediatric rheumatologists all over the country are working together to study CRMO to best determine the treatment options for these children.
I guess, at first, they were checking they thought it might be cancer or something like that. Is that often, sometimes when people have an MRI that lights up or something?
Saad: Yes, with CRMO we don’t have a specific test to say that it is CRMO. We do imaging and, for example, an MRI, and we see the spots in the bones, and then sometimes we need a bone biopsy to rule out infection or cancer or a different condition that may say that it’s not CRMO.
You’re basically backing in to the diagnosis because there isn’t a specific test, right?
Saad: Right. We call it a diagnosis of exclusion.
What else is important about this condition that you think people should know and what other messages again for parents who may have kids with this condition?
Saad: I think it’s important to know that CRMO is a rare disorder, but in some children who let’s say they fall in the playground and they aren’t getting better after a week or you start to notice that they’re limping or that they’re swelling over a bone. That’s something to go to their primary doctor to start the work up, to see could they have CRMO.
Then where does it go from there?
Saad: After that, children are usually referred to either orthopedics or pediatric rheumatology to start doing that, further investigation into imaging. And then maybe, like imaging before a bone biopsy to best determine what the diagnosis could be.
I know you said there’s no cure, but a lot of kids grow out of it. So is it fair to say that even if it’s a debilitating condition for some, there is hope for them as they get older?
Saad: Yes, definitely.
When do they typically age out of this? What is the lifespan of this?
Saad: It’s very variable but I would say starting in like young adulthood, that’s when we start to see CRMO at lower rates and start to go away.
A typical a patient who has it, how often would they be having imaging done? Like, once they’re diagnosed, what happens then?
Saad: Once they’re started on treatment, we usually follow up with MRI’s about every 3-6 months to make sure that the lesions are getting better or if they’re changing. If we have to change the treatment protocol, then we can.
You had mentioned the names of two drugs that were used before. What happens if the legions keep coming back? What is the next course of treatment?
Saad: There are further medications. There are other things called bisphosphonates, which are infusion medications that we can also use.
What’s the difference between auto immune and auto inflammatory?
Saad: So autoimmune conditions are when there’s a specific target that your immune system is attacking and with autoinflammatory conditions, your immune system is overactive and just doesn’t have the stop mechanisms that it should.
There are not many pediatric rheumatologists in this state or this country. How far do people travel to get care for this?
Saad: The estimates are that there are about 300 pediatric rheumatologists across the country, and some states do not have a pediatric rheumatologist, and so people will have to travel to another state to see that specialist.
Does that delays diagnosis for people with this condition?
Saad: Yes, it does.
Now, I didn’t mean to put you on the spot before when I asked you how rare, but Christie said, from her research it’s about one in a million.
Saad: And I think part of the problem is we don’t know how many children may have CRMO, but they never sought medical care, for example, because maybe someone thought it was growing pains and then just the nature of CRMO in some kids, it just goes away on its own. So there may be some more milder cases that we are missing.
END OF INTERVIEW
This information is intended for additional research purposes only. It is not to be used as a prescription or advice from Ivanhoe Broadcast News, Inc. or any medical professional interviewed. Ivanhoe Broadcast News, Inc. assumes no responsibility for the depth or accuracy of physician statements. Procedures or medicines apply to different people and medical factors; always consult your physician on medical matters.
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