Managing people with sickle cell disease and complex chronic pain is difficult and requires some trial and error, said C. Patrick Carroll, MD, director of psychiatric services, Sickle Cell Center for Adults, associate professor of psychiatry, Johns Hopkins Medicine.
Managing people with sickle cell disease and complex chronic pain is difficult and requires some trial and error, said C. Patrick Carroll, MD, director of psychiatric services, Sickle Cell Center for Adults, associate professor of psychiatry, Johns Hopkins Medicine.
Transcript
For patients with sickle cell disease who have the highest levels of pain, what treatment options need to be considered if their pain is not properly managed?
Well, the highest levels of pain in the question is tricky, because sickle cell disease can produce all manner of pain with all kinds of time courses. So, you can have some people who have intermittent crisis pain or acute pain. And then there are people who have very frequent crises. And then there are people who have chronic pain, and sometimes that can be from a complication of sickle cell disease, like avascular necrosis, and sometimes you can't find any particular cause for it, except that they have sickle cell disease. And then you can have any combination of those.
And so, much depends on the actual clinical situation. So, if you have someone who's having frequent crises, the first thing is can you manage the sickle cell disease any better? One of the questions I'm often asking my team is, are we treating this patient for crises they shouldn't be happening? Are they on hydroxyurea? Are they getting any other former disease-modifying therapy? Or are they worth a try on chronic transfusion therapy? Anything we can do to try to help the acute pain, prevent it, but also to help shift people more towards an outpatient care strategy with a multidisciplinary team rather than being cared for in emergency rooms and inpatient hospitals.
And then if you can achieve that, the question it really depends on what's been tried and what has failed. And I am a big fan of declaring failure when things haven’t worked. So, if a person's been treated in a particular way, it doesn't seem to have worked, then the thing to often do is to stop doing that rather than do more of it and try something different. But the evidence base behind any treatments for chronic pain in particular is very poor. And so, we're very much in a trial-and-error process more trying to manage people with complex chronic pain.
Quantitative Muscle Ultrasound a Promising Noninvasive Biomarker for DMD
July 29th 2025Quantitative muscle ultrasound correlates strongly with ambulatory and timed function tests in Duchenne muscular dystrophy, suggesting it could complement or even replace more burdensome assessments.
Read More
FDA Approves Pegcetacoplan for Rare Kidney Diseases C3G, Primary IC-MPGN in Patients 12 and Older
July 29th 2025The FDA approved pegcetacoplan (Empaveli; Apellis Pharmaceuticals) as the first treatment for patients 12 years and older with the rare, severe kidney diseases C3 glomerulopathy (C3G) and primary immune complex membranoproliferative glomerulonephritis (IC-MPGN).
Read More