What is Tumid Lupus Erythematosus (TLE)

Tumid lupus erythematous is an autoimmune disorder similar to cutaneous lupus that is especially sensitive to light. 

Cutaneous lupus erythematous (CLE) is an autoimmune disease, which means that the immune system attacks the body's own cells. Cutaneous lupus causes damage in the skin, and also the inside of the mouth and genitals, and can lead to very visible and even painful symptoms. These symptoms include sores, rashes, and plaques. You can read more about skin health and lupus here.  People with cutaneous lupus can have problems with itchiness, fatigue, pain, and infections.

Cutaneous Lupus and Tumid Lupus - What is the Difference? 

Tumid lupus erythematosus (TLE)  is generally considered a rare subset of cutaneous lupus, similar to discoid lupus erythematosus (DLE)  and is diagnosed under that name, though some researchers think that it’s actually a different autoimmune disorder. In any case, TLE involves inflammation in the skin, leading to the formation of skin plaques on areas that have been exposed to light. It can happen on any exposed skin, so primarily on the face, scalp, and arms (though it can cover more areas.) Skin plaques are a type of skin lesion that appears as raised, thick, and flaking patches of dead skin, often over reddened and inflamed skin. It occurs when inflammation attacks the skin and causes the cells to overcompensate and divide more than usual, leading to more skin cells than usual reaching the surface in that patch of skin. The plaques can be large, encompassing whole parts of the body, or small, appearing like lumps with dry, flaking skin on top. The excess skin flaking can be small and dandruff-like or come off in large flakes.  The plaques themselves are not always harmful, but they are uncomfortable and itchy, and can lead to serious comfort and appearance issues which can cause issues with mental health, social connections, and even work. If the skin is broken because of scratching, flaking, or blistering, there is a risk of infection, and when these plaques occur on the scalp, it can encourage hair loss.  In TLE, these plaques appear in areas that have been exposed to light. TLE can also cause general issues like fatigue and brain fog, as the inflammation uses energy and disrupts other systems in the body. TLE doesn't appear to be readily detected by antinuclear antibody tests, a common test to detect lupus. It is currently unknown why.

Photosensitivity and Lupus 

People with lupus often experience photosensitivity. This means that, when exposed to ultraviolet light, many people with lupus will have a reaction - but not as rashes or other symptoms on their skin. You can read about the classic malar rash, here.  Sunlight exposure (which includes both heat and ultraviolet exposure) can cause all lupus symptoms to suddenly intensify, including the internal ones. This is called a flare.  People with lupus are often advised to cover up and use sunscreen whenever they go outside. People who are photosensitive have their symptoms flare in summer and in situations that have water and snow, which reflect light. As a side effect, many people with lupus have vitamin D deficiencies and need supplements. You can read more about the weather and lupus here.  

Treating Tumid Lupus Erythematosus 

TLE is treated with topical corticosteroid creams that are put on the affected areas. Sunscreen and covering clothing are used to protect the skin from the sun, and the hope is that the combination of protection and medication will help reduce the symptoms.  Usually, the rashes and lesions will clear up with treatment and sun protection within months. If topical creams do not work, then doctors will prescribe antimalarials such as hydroxychloroquine. Methotrexate and mycophenolate mofetil are also used if these do not work. The hope is that these drugs will reduce inflammation in general, which will reduce symptoms.

A Lupus Warrior's Takeaway 

People with lupus in general should be careful about sunlight exposure - use sunscreen, clothing, and indoor facilities when possible. This comes up often when travelling or going on vacation, and you can read more about travelling with lupus here.   People with TLE have to be wary of sunlight but should also be vigilant for the appearance of other symptoms. Although TLE and CLE are mainly in the skin, both can potentially be a sign of systemic lupus erythematosus under the surface. Cutaneous lupus - including TLE - can occur alongside systemic lupus erythematosus (SLE), and about 75% of people with SLE have skin-related symptoms. According to some sources, about 10% of people with SLE will have symptoms that look like TLW.  This means that it's important for people with lupus to monitor their condition and update their treatment team about any new symptoms that occur.