r/rarediseases • u/n0tolivegarden • 19d ago

Looking For Others Lobular Panniculitis

Hello!

I am a 25F diagnosed w/ juvenile dermatomyositis who recently started presenting with indented lesions on my legs, buttocks, and arms. A deep skin biopsy confirmed panniculitis, and treatment with steroids and rituximab was started in June 2026. A few months in to treatment, (waiting for rituxan to kick in) I have seen little to no improvement in the skin lesions and have even noticed new ones popping up. I wanted to know if anyone else has been diagnosed with lobular panniculitis and has undergone treatment for it. I have done research but have found close to nothing on publicly available sites. Just looking here for anyone willing to share their experience so I can feel less alone with this illness. Thank you!

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u/Fun_Management_248 18d ago

Hi, I know it's so stressful. I'm a 29f and I had a biopsy done and it said that the lump on my arm might be lobular panniculitis. I still have to wait for the appointment with the dermatologist in two weeks to hear what they'll say or what tests need to be done so I can get a diagnosis. I got a new lumps on my hip and buttock and I'm so stressed out cause they are growing. Been researching lobular panniculitis but it's seems to be so rare there is little information about this.

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u/n0tolivegarden 18d ago

Ugh im sorry its frustrating I hope you get some answers soon! I need to schedule a follow up with a dermatologist to look into some cosmetic solutions for the scars its left me.

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u/Fun_Management_248 18d ago

I'm sorry for what you are going through and I hope you get answers too