Lupus, the Wolf Disease

By Ruth Werner, LMP, NCTMB
April 5, 2017

Lupus, the Wolf Disease

By Ruth Werner, LMP, NCTMB
April 5, 2017

May is Lupus Awareness Month, and Massage Today has asked me to contribute a few words about this complicated condition. And since it affects about one in every 300 people in this country, the chances of having a client who lives with lupus are fairly high.

What Is Lupus?

Lupus is an autoimmune disease, which is to say, it is the result of our own immune system attacking some part of the body. As such, it runs in cycles of flare, when the immune system aggressively attacks target tissues, and remission, when everything calms down. Patients usually work hard to prolong periods of remission, and to do what they can to make flares less frequent and less severe.

Readers are probably familiar with several autoimmune diseases, such as rheumatoid arthritis (involves immune system attacks on the synovial joints), and multiple sclerosis (involves immune system attacks on the myelin sheaths of nerve fibers in the central nervous system). However, one of the things that makes lupus so challenging is that this is an autoimmune attack against — almost anything.

It can involve problems with the skin, with blood vessels, with the lungs and kidneys, even the brain. It can range from being mild and easily managed, to being life-threatening, and it never looks or behaves the same in any two people.

Who Gets Lupus?

Like many autoimmune disorders, many more women are affected by lupus than men; in this case the ratio is about 9:1. Most diagnosis come in late adolescence or early adulthood. We think it affects about 1.5 million people in the U.S. and it is more common in people of color than it is in Caucasian.

What Does Lupus do to the Body?

The common factor in lupus is immune system attacks against a variety of tissue types throughout the body. These attacks often begin in small blood vessels, which can cause inflammation, clotting, and nutrition supply problems to all the tissues downstream of the damage.

Eventually the attacks target other tissues as well, leading to inflammation, scarring, and loss of function. We don't know the causes or triggers of lupus, but studies of widespread populations and close genetic matches — including identical twins — suggests that it is related to a genetic predisposition, with substantial influence from hormones and environmental exposures.

Interestingly, in the U.S. and the U.K. the demographic group most susceptible to lupus is Black women. But in Western and Central Africa, lupus is very rare. This suggests environmental factors —maybe "First World" pollutants, or the quantity of sunlight, or something entirely different — work in addition to specific gender and genetic profiles.

Lupus has several subtypes, but two of them (discoid lupus and systemic lupus) are by far the most common, so they are the ones we will focus on here.

Lupus Variations

Discoid Lupus

The first type of lupus, discoid, onlyaffects the skin, and it is mostly found on the face. It can involve a characteristic butterfly or malar rash of redness over the nose and cheeks, or it can look like many discrete, small, scaly, red patches.

The skin can become very thin and delicate, or lesions may become permanently discolored and thickened. A small number of people with discoid lupus go on to develop systemic lupus.

These skin patterns gave rise to the name of this disease. Although there are two schools of thought about where the name "lupus" (in reference to wolf) comes from.

First, it could be from the discoloration of the nose and cheeks, thought to resemble the mask of a wolf, or it could refer to the multiple scaly red patches that suggest a person has been bitten by a wolf.

Systemic Lupus

The second type of lupus, systemic, is caused by immune system attacks against a variety of tissues throughout the body, usually by way of medium and large blood vessels.

In the skin, systemic lupus causes the same lesions we see with discoid lupus, and these are exacerbated by exposure to sunlight. Ulcers in the mouth, nose, and throat may also occur, and tiny "spider veins" or telangiectasias, may develop on the skin with painful welts.

In the musculoskeletal system, systemic lupus can cause painful inflammation of the joints. However, this usually happens unilaterally, and without damage to the cartilage, which distinguishes this from other types of arthritis. Many patients also develop non-specific general aches and pains, which can mimic fibromyalgia or other chronic pain syndromes.

What You Can Expect

Inflamed blood vessels in the central nervous system can lead to headaches, psychosis, fever, seizures, and a risk of stroke. In the cardiovascular system we see that inflammation of the blood vessels opens the door to atherosclerosis and heart attack, even in young people. Damage to veins can lead to venous thromboembolism, and a risk of pulmonary embolism.

Widespread chronic inflammation suppresses bone marrow activity, so anemia and thrombocytopenia (shortage of platelets) may develop. And Raynaud phenomenon — pathologic constriction of blood vessels in the extremities — is a common complication. When lupus affects the lungs it can lead to pleurisy, pneumonia, pulmonary hypertension, resistance in the pulmonary circuit of circulation, and consequent right-sided heart failure.

In the urinary system lupus can cause a specific type of glomerulonephritis. This is inflammation in the nephrons, which can cause silent, progressive kidney damage and a risk of end-stage renal failure. And finally, lupus affects the reproductive system by changing clotting mechanisms in a way that raises the risk for miscarriage. A woman under treatment for lupus has some difficult choices to make, because some of the most effective drugs are not safe for a pregnancy.

Treatment Toolbox

The treatment strategies for lupus focus on promoting remission to limit tissue damage, and to improve the person's quality of life. It is important to treat symptoms quickly to try to limit the amount of damage that this disease can cause.

Some cases can be managed with nonsteroidal anti-inflammatories, but lupus patients must be wary of the kidney damage that these drugs can cause in the long term. During flares a person may need steroids — these are powerful anti-inflammatories, but they must only be used for short-term goals.

If these don't work, then antimalarial drugs or immune suppressant drugs may be recommended. Other interventions for lupus are used to treat other symptoms and side effects: steroid creams for skin problems, bisphosphonates for bone health (because steroids can weaken bone tissue), and so on.

Massage for Lupus

Discoid lupus that only affects the skin is relatively safe for massage, as long as the skin is strong, intact, and not painful. But systemic lupus is a more complicated decision involving many possible risks and some important benefits.

Active flares of systemic lupus involve inflammation that can damage the skin, heart, lungs, and kidneys, and cause painful swelling at joints. Rigorous massage during these acute episodes may exacerbate symptoms and put undue stress on an inflamed cardiovascular system.

Further, the medications that a person with lupus may take also carry risks: anti-inflammatories suppress the inflammatory responses and make it easier to over-treat a client. Painkillers may hide important information about the client's comfort. And steroidal skin creams can make the skin very delicate and easy to tear.

All that said, gentle massage may be soothing during flares, and more rigorous massage during remission (within tolerance of course) may help to deal with pain and stiffness, allowing the client with lupus to be more active when it is possible.

Lupus is a complex, serious condition. It is unlikely that massage therapy will make a huge and permanent improvement in the course of a person's experience with this disease. But if we can safely reduce stress and pain, even temporarily — and this is a completely realistic goal — then we are able to offer a valuable addition to this person's coping strategies.