Lupus profundus/panniculitis

In August the fat disappeared from my right cheek. I've been to several specialists and they are reluctant to diagnose lupus because I never had lesions, only facial atrophy due to losing fat. I live in the USA and because what I have is rare there aren't many doctors who are qualified to treat this. The dermatologist I just saw wants me to go to a large city to be seen. I don't have the finances, time, or any other resources to travel and hope for a diagnosis. Any help with this would be appreciated. Does anyone have facial atrophy of fat without lesions?

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  • I hope someone can help u soon. Strangely I have a deep dent in my cheek too, covered by a brown mark. Is it connected to lupus?

  • The fat disappeared off my upper left arm many years ago, looking like I had a dent. Lots of Medicals have seen it, and although they agree dent there can't agree what it is. A tiny hole appeared a while later and it gets very itchy, sometimes the itching is excruciating. The hole still there and every now and then red rash spots appear around it.

    I hope you get on OK. I had decided that the next time I saw my rheumy I would bring it up again and make them have another look.

    Thinking back I had a red straight line appear just where the hole is now, then crust appeared and I had to brush that off every so often and that's when the dent started to appear.

    I'd say it was lupus, just rare lupus. I have panniculitis too. But never when I'm due at the rheumy's!

    Good luck to you

  • I am also in the US and your derm has a good idea. The biggest help I have received is from university doctors. If you have insurance, they are no more costly than another other specialist, but they have so much more experience and knowledge. It just takes a long time to get an appointment. What state are you in? We don't live in a big city, but we travel to Tampa from Fort myers (over 2 hours) for my neurologist. We used to travel over 5 hours, but happily we found a closer (and even better) one now. My family doctor cares for the smaller things, but we travel to the neurologist every few months. Muscle atrophy can also be caused by myositis (which I have). It is also very rare so not many doctors are trained in it. You'd specifically want a neuromuscular specialist for that. Wish you the best!

  • Where in the US do you live, if you don't mind telling me the general area? I live in rural upstate NY and it's far from any large city like NYC or Philadelphia, which are two areas that were recommended for a specialist in each city who is familiar with lupus profundus or panniculitis.

  • Also, this has not affected my muscles at all, thankfully.

  • Hello,

    I am sorry to hear that you are experiencing these issues.

    According to the Lupus Encyclopedia Lupus profundus (also called Lupus panniculitis) is a form of Chronic cutaneous lupus erythematosus (CCLE). This form of CCLE appears as firm, tender areas under the skin, especially on the upper arms and thigh areas. It can cause inflammation of the fat underneath the skin and can cause a rash on the surface of the skin. If left untreated, they can cause the loss of tissue (especially fat).

    It does sound like your dermatologist gave you the right advice in term of needing to see a specialist, potentially in a different city, to get the issues you are experiencing correctly diagnosed and addressed.

    Perhaps you could contact the Lupus Foundation of America to see if they can recommend a specialist who may be closer to you? lupus.org

    You might find our leaflet on skin and hair useful and you can download or request it on our website here lupusuk.org.uk/wp-content/u...

  • Thank you to all who replied. I did find a doctor about 90 miles away through the lupus foundation here in the states, so I'll be going on the 20th of this month. Meanwhile I heard from the Plastic Surgeon I previously went to and he's recommending fat grafting to fill the cheek. Does anyone have any experience with that? He says it's safe and will restore my cheek to normal.

  • I am so happy for you that you found a specialist! I hope it goes well.

  • Thank you. I'll keep you posted.

  • I saw the rheumatologist (90 miles from my home) and he is recommending plaquenil to treat this condition. He wants me to have my eye doctor send him a letter stating that my eyes are healthy because there is a rare side effect of retina damage. So, I'm going to give it a try, to hopefully arrest this Lupus Profundus situation. Hope you all are doing well and will see increased health in the new year!

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