Positive Options for Living with Lupus (14 page)

There is sounder evidence when it comes to individual foods.

Fats

Graham Hughes reports the case history of a seriously ill rheumatoid arthritis patient who was passionate about cheese; she ate it every day. As a test, they tried withdrawing her daily cheese ration, in fact
all
dairy foods, for seven weeks. To everyone’s surprise, within weeks there was a clinical improvement, so much so that in six months they were able to reduce her medication to zero. Being true scientists, they decided that, to confirm the relationship between dairy products and symptoms, they should give her cheese again—what is called “rechallenging” the symptoms. They tested her with several known food antigens with no response, finally giv-POL text Q6 good.qxp 8/12/2006 7:39 PM Page 85

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ing her the cheese protein
casein
. Sure enough, the following day she was rigid with severe arthritis that lasted some days. She is now a healthy ex–cheese eater.

The effects of various sorts of fats in the diet have been studied in detail over the past decade. (In very crude terms, saturated =

dairy products/red meat = bad, and unsaturated = fish = good.) Fats are thought to affect the autoimmune system via their action on the prostaglandins that cause inflammation. A study in which people with lupus reduced their total fat intake to 25 percent or less of their total daily caloric intake, which also included a fish-oil supplement, improved their symptoms over a three-month period. The explanation is thought to be that foods with
antioxidant
and anti-inflammatory properties lessen arthritic symptoms. One of these, the latest star in the nutrition galaxy, is omega-3 fatty acid, present in fish oils and some plant oils, including walnut, almond, flaxseed, and canola (rapeseed). It has been shown to reduce the pain and swelling of autoimmune arthritis.

Vitamins

Fish oil is also rich in vitamin D, thought to have anti-inflammatory properties. Studies support the idea that vitamin D, which the body needs to absorb calcium, has a protective role in arthritis and also helps to reduce the osteoporosis caused by using corticosteroids.

Bearing in mind that vitamin D is obtainable chiefly from sunlight, which lupus sufferers must avoid, supplementing the vitamin via the diet makes a lot of sense. In addition to vitamin D, there is some evidence that a shortage of vitamin A may aggravate autoimmunity.

A Lupus-Drug Diet

Diet is a very important way to counteract the effects of lupus medication. You have already been warned about steroids; the list of potential damage they can cause, especially when taken in high doses and over long periods, makes very depressing reading, but even aspirin has a nutritional sting in its tail: It depletes vitamins A and POL text Q6 good.qxp 8/12/2006 7:39 PM Page 86

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B-complex. Diuretics and some NSAIDs can also do damage, and all lupus medication carries a risk of upsetting digestion and damaging the lining of the digestive tract. But let’s be positive: You can compensate for these hazards with the right diet.

General Rules

Take your drugs with food to decrease the irritating effect on the gut and to increase the time available for absorption of the drug. Avoid excess fluid, limit saturated fats (from dairy and red meat), and eat plenty of fiber, fruits, and vegetables to keep your weight down. Eat protein in moderation: meat sparingly (especially red meat), shell-fish cautiously (oysters are a no-no for many lupus sufferers, and see the discussion of scallops in “Yellow-Light Foods,” below), but fish in quantity, especially when you have a fever, which can cause ni-trogen losses.

Green-Light Foods

To counteract the effect of lupus medication you need to boost potassium, calcium, zinc, iron, and vitamins A, B-complex and B-6, C, D, and E. Fortunately these double up in a number of foods: fruit (especially bananas for potassium, oranges and strawberries for vitamin C), plums, blackberries, avocado, and melon; vegetables, especially green ones such as broccoli, spinach, cauliflower, and green beans (with the exception of alfalfa sprouts; see page 88); oily fish like salmon, herring, tuna, and mackerel; high-fiber carbohydrates like whole-grain cereals, bread, nuts, and potatoes.

Yellow-Light Foods

Saturated fats—such as dairy products and fatty meats—should appear in your diet in moderation or low-fat versions. Eggs, like meat and dairy foods, are high in cholesterol and should therefore keep a low profile; so are scallops, but for most people they are too expensive and filling to eat in large quantities anyway.

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Red-Light Foods

Eat as little salt as is palatable; it increases fluid retention and can raise blood pressure. Mushrooms, cured meats, and hot dogs should be consumed with caution. They contain chemicals that have been found to aggravate lupus symptoms (also see oysters, above).

Valerie’s Story

Valerie, a lupus sufferer, was very positive about modifying her diet. As she puts it, “I los t twenty-four pounds by reducing fat and increasing my intake of vitamins and potassium (fruits like bananas and oranges). I have fewer pains in my knees because of this weight loss, and the vit amins seem to reduce the butterfly rash on my face. Who knows if diet helps lupus, but if you carry too many pounds the pain is cer tainly greater. And now I feel better with other people, because I feel pretty in my new body.

It’s a morale booster.”

Are There No Alternatives?

Whenever a chronic illness that affects many people is inadequately controlled by orthodox medicine, you find a mushroom growth of alternative cures. It represents the capitalist marketing instinct responding to a natural human desire to try any port in a storm. Doctors are skeptical about such cures because they don’t have to undergo the rigorous clinical testing demanded of a prescription medicine. The word “natural” often used for such cures is little more than a word printed on the label. Many herbs and supplements—some Chinese medicines for example—contain potent ingredients (and ones that may interfere with prescribed and effective medication), but in unreliable quantities. Attempts to test the efficacy of such products are hampered by the fact that few have a consistent content from one batch to another. Investigations triggered by occasional cases of someone coming to serious harm after taking alternative products have revealed that they may contain substances not mentioned in the labeling, such as powerful hormones, potent anti-inflammatories with major side effects, or sulfa drugs POL text Q6 good.qxp 8/12/2006 7:39 PM Page 88

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that set off hypersensitivity reactions and react with other drugs.

Lupus expert Sheldon Blau cites one supplement—alfalfa sprout—

that, between the years 1995 and 2002, was associated with seventeen outbreaks of food poisoning caused by salmonella or
E. coli
infection (as reported to the U.S. Centers for Disease Control and Prevention). People with lupus are particularly vulnerable because they are at greater than average risk of suffering hypersensitive or allergic reactions to something like St. John’s wort, which can trigger severe photosensitivity.

Suffice to say that as a lupus sufferer you should be hypercau-tious about what you swallow—whether in the form of so-called alternative cures or food supplements—because you cannot be absolutely sure of what’s in them. If in doubt, don’t take it.

Therapies That May Help

Treat your digestive system with respect, but the outside of your body may indeed benefit from therapies not provided by orthodox medicine or physiotherapy. Relaxation and exercise techniques like yoga, t’ai chi, acupuncture, meditation, and aromatherapy are un-doubtedly stress reducing and psychologically beneficial for a large number of chronic or incurable conditions. Acupuncture has demonstrated some painkilling effects. Many people with lupus, not to mention the unaffected, swear by them. A study of patients in North America and the United Kingdom, published in the journal
Arthritis and Rheumatism,
found that nearly half had tried alternative therapies. If you think you have found something that helps you and which doesn’t clobber your bank account, it does no harm, provided you don’t stop your prescribed medication.

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Chapter 9

Seven Lupus-Like

Conditions

Lupus, as we have seen, is exceedingly difficult to pin down. It comes and goes, and in many guises. For years it was thought to be more than one disease, and even now the boundaries between lupus and lupus-like conditions are constantly shifting. The labeling of illnesses is an imperfect science and is always under review.

The majority of people with lupus have lupus alone. Between 5

and 30 percent of people with lupus have overlapping symptoms.

Connective tissue diseases (CTDs), a category that includes lupus and rheumatoid arthritis, are particularly prone to this overlap phenomenon. Conditions like Raynaud’s phenomenon or Sjögren’s syndrome may put in an appearance with lupus or a number of CTDs and may also occur alone. (Some of these conditions have already been mentioned and will be familiar to the reader.) Establishing what an individual patient is suffering from ultimately lands in the lap of the diagnosing physician. Fortunately, treatment is driven by individual clinical symptoms, so it does not vary greatly.

CTDs have a number of features in common:

◗ They affect women much more frequently than men.

◗ They are “multisystem”: They affect the function of many organs.

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◗ They overlap with one another, sharing symptoms, signs, and abnormalities detected in the laboratory.

◗ Blood vessels are the most common target of injury.

◗ The abnormal behavior of the immune system is responsible, at least in part, for the tissue damage they cause.

This chapter examines some of the illnesses whose symptoms can overlap with those of lupus.

Mixed Connective Tissue Disease (MCTD)

To the layperson this mouthful of a title probably seems a bit of an evasion. Graham Hughes calls it a “mongrel” because it combines symptoms of lupus with those of other CTDs (see Chapter 1 and Chapter 4). It may include:

◗ Arthritis (especially of the hands—“sausage fingers”)

◗ Polymyositis-dermatomyositis, or PM-DM (muscle inflammation)

◗ Scleroderma (hardening of the skin or connective tissue)

◗ Raynaud’s phenomenon (poor circulation leading to very cold extremities)

What distinguishes MCTD from lupus pure and simple is that it is almost never accompanied by the involvement of organs like the kidneys. Laboratory tests usually reveal that the patient has one specific antibody called “antiRNP” but none of the other antibodies commonly associated with lupus, scleroderma, or PM-DM. Although there is some doubt as to whether MCTD really is a separate disease or several diseases showing up together in the same patient, the presence of the single antibody weights the scales in favor of a distinct disease.

MCTD treatment is geared to the symptoms experienced by the individual patient. But because the condition is less life-threatening than lupus or rheumatoid arthritis, doctors tend to be as con-POL text Q6 good.qxp 8/12/2006 7:39 PM Page 91

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servative as possible in prescribing drugs. Nevertheless, low to moderate doses of steroids are often required for many years to control MCTD adequately.

Raynaud’s phenomenon—another condition named after the doctor who first described it—may occur either as part of MCTD, in conjunction with lupus (between 20 and 40 percent of cases), or alone (between 5 and 10 percent of the population). It’s caused by a sudden constriction of the smallest arteries, cutting off the peripheral circulation, an exaggerated version of the body’s normal response to extreme cold and the need to conserve heat. In addition to practical measures, such as keeping the hands and feet well insulated in cold weather (some people use electrically heated gloves), drugs that relax and dilate blood vessels can be helpful. Calcium antagonists, which were originally designed to lower blood pressure and treat coronary heart disease, have been found particularly beneficial. Some doctors prefer to prescribe regular, low-dose aspirin as a preventative. This is also protective against coronary artery disease and stroke.

Sjögren’s Syndrome

Henrik Sjögren (the nearest pronunciation is “showgrin”) was a Swedish ophthalmologist and the first to recognize that people with CTDs often had dry eyes and mouth, or sicca (dry) syndrome (see Chapter 4). The dryness is caused by a buildup of immune system cells in and around glands that produce tears and saliva, leading to reduced production of these essential fluids. Some 5 percent of lupus patients develop Sjögren’s, sometimes late in life when most of their other symptoms have abated. The eyes feel gritty and itchy, especially early in the morning, and sometimes they are also sensitive to bright light. But discomfort is not the only symptom. Tears and saliva perform an important protective function, and without them the eyes and teeth are more prone to infection. Saliva normally helps wash away plaque, the invisible bacterial film that develops on the surface of tooth enamel and leads to cavities and gum POL text Q6 good.qxp 8/12/2006 7:39 PM Page 92