Been going through a rheumatology workup for months and SAPHO keeps coming up as a strong fit. Quick rundown.
I’m 40m, nodulocystic acne on my back/chest since teen years that didn’t fully resolve after accutane (2009ish). Chest wall pain that was diagnosed almost 10 years ago as costochondritis and improves with NSAIDs. Clean EKGs. Bilateral mandibular tori suddenly, 18 months after wisdom tooth extraction. Recurrent fluid-filled plantar lesions that my PCP called warts but don’t look or behave like warts — itchy, slightly painful under pressure, come back in the same spot every couple years. Inflammatory knee pain, now bilateral.
Labs are completely clean — normal CRP, ESR, negative HLA-B27, negative autoantibodies. Rheumatologist initially floated AS but the seronegative peripheral pattern with skin and bone involvement feels more like SAPHO to me.
Haven’t had bone scintigraphy or chest wall imaging yet, which I understand is kind of the key diagnostic step. Curious whether anyone else had a long road to diagnosis and what finally got it confirmed.
Or, is it something else completely?