DEAR DR. ROACH: My girlfriend has necrobiosis lipoidica. She suffers from this on her shins, as did her mother. She is not diabetic. We cannot find good information on how to rid her of this. The information we find is not about cures, but treatments that mask the symptom, such as steroids. We cannot even find a doctor that specifically treats this condition. Can you help? — M.B.
ANSWER: Periodically I get letters referencing a condition I know absolutely nothing about, and this is one of those. Fortunately, I have the time to do a lot of reading, and I talked to several people with the condition. Here is what I found.
Necrobiosis lipoidica is a rare skin disorder, usually but not always associated with diabetes. It occurs mostly in young adults (the average is 25 years old when associated with diabetes, 46 years if not), and is more common in women. It may also be associated with thyroid disorders and celiac disease. The cause is unknown.
The diagnosis is made by skin biopsy. The appearance is usually of a large, variably colored and elevated patch of skin, most commonly on the shins, as your girlfriend's is, but it can spread to other parts of the body, especially skin that has been scraped or damaged. Because necrobiosis lipoidica can occasionally transform to skin cancer, it needs careful surveillance.
There is no cure for necrobiosis lipoidica. However, there are treatments that can reduce the inflammation. Steroids, either topical or injected, are the usual first choice. Topical steroids are more effective if they are given as ointment and covered with an air- and water-tight dressing. If topical steroids are not as effective, there are many other therapies that have been tried, including: the medication tacrolimus, which decreases the immune response; ultraviolet light A; antimalarial drugs (also used for autoimmune diseases); and others. The disease normally progresses slowly, then stabilizes, but it can spontaneously resolve in some people.
Necrobiosis lipoidica may also ulcerate, at which point a wound care specialist may be of tremendous value.
It may not be easy to find an expert dermatologist for this condition. I would start with a support group, as you can get expertise from others who have been living with this condition. I found one large group on Facebook. I read some tips on makeup and temporary tattoos for cosmetic improvement.
I found two clinical trials recruiting subjects, one in Boston and one in Pennsylvania. You can find clinical trial information at clinicaltrials.gov.
More good information is available at https://tinyurl.com/NLskin.
Readers may email questions to ToYourGoodHealth@med.cornell.edu or send mail to 628 Virginia Drive, Orlando, FL 32803.