Yes, I have panniculitis in my lower abdomen, though I haven't had the ulcerations you've described. I sometimes have annular or hive-like surface lesions, but more often than not my skin appears normal at the surface. Panniculitis is extremely painful, and I never know when another flare-up may occur. I've read that only 1-3% of people with lupus have panniculitis as a cutaneous manifestation of the disease. I am currently taking Prednisone and just started Cellcept, but am still experiencing terrible pain from the subcutaneous nodules. Can you tell me a bit about your treatment, Leonie? Did you always have ulcerated lesions or did that develop over time?

Panniculitis is inflammation of the fat pads under the skin. It is caused by autoimmune activity. This is not one of the more common manifestations of lupus.

Hi Jenny
I do know what it is because I have it. It is a form of cutaneous lupus which affects the deep fat layer of skin. It causes painful lumps deep in the fat and ulcerates and leaves ugly scars. It causes the fat layer under your skin to atrophy (shrink) leaving deep hollows . Autoimmune disease of the connective tissues. You also can break out in bad hives. It usually occurs on the arms trunk legs or face. Mine is thankfully on my arm and breast. Very ugly but not on face and for that i am thankful. It also gives you the other lupus stuff like fatigue etc. Anyway I dont know anyone else with this on this site and was just wondering if I could find someone else with it. Apparantly it is a rare form.

I have this. My upper arms are disfigured and scarred with it. I also had a nodule/plaque develop under my chin that has left scarring. Interestingly, that nodule was injected soon after it appeared with steroid and it healed much quicker and with less pain than the others.
They start as very warm spots and then a small roundish lump forms. At this point it becomes rather tender. After this an open sore developed over the lump that was quite painful. These stayed like this for weeks. I was given a steroid cream that didn’t really seem to work. During this period I was also getting discoid lesions on my head (leaving lovely bald spots!!!) on my head and a couple on the back of my neck. The panniculitis formed all over my upper arms and then when they finally healed it left a dent and a bit of a scar where the sore was. It looks like someone attacked my arms with a melon baller. This went on for a couple years, the lumps then the lesions. I usually had no more than 1 or 2 active at anytime but they were painful and disfiguring. Towards the end I got a couple on my chest.
I changed rheumatologists and was put on a much more aggressive treatment plan. With higher prednisone and cytoxan these and several other weird issues resolved. I have not had a panniculitis lump/lesion in years. My disease is much better managed now.
Not sure if any of this is helpful but hopefully it reassures someone. As miserable as these are they do heal and can be gotten under control.

Hi @A MyLupusTeam Member, I don't know if I can answer your question, but I can speak from my own experience. I myself have SLE, with joint pain and swelling, hair loss, malar rash, etc. When I was first experiencing lupus symptoms, I began to get large, unexplained bruises on my calves and shins, and developed extremely painful subcutaneous nodules in my lower abdomen. I was told that those symptoms resembled panniculitis, but a biopsy proved inconclusive. They didn't want to trouble me with going through another biopsy, so they never officially entered a diagnosis.

From reading Dr. Daniel Wallace's research on lupus, I actually don't think it's common for people with lupus profundus NOT to develop SLE -- usually, people who have underlying SLE develop the skin condition and not the other way around. Perhaps you are thinking of discoid lupus, which can be a self-contained disease and does not mean that SLE symptoms are present.

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