Scleroderma
Softening Rock-Hard Skin
Talk about being a prisoner in your own body. People with scleroderma--literally, hard skin--can become encased in thick scar tissue. The disease can turn a formerly animated face into an expressionless mask and stiffen hands into claws. About one in three people with the disease may also have problems with the intestines, kidneys, heart or lungs.
Scleroderma, like lupus and rheumatoid arthritis, is an autoimmune disease. This means that the immune system, the white blood cells that normally protect against bacteria, viruses and other foreign invaders, turns renegade and attacks the body's own tissues. In this case, the attack is on connective tissue called collagen. Collagen is found throughout the body, including in the skin, the muscles and the organs.
The immune system attack first produces inflammation that can make the joints hurt and cause the hands to become puffy. Ultimately, scar tissue forms and makes the skin thick, hard and shiny. Muscles can become weak. And almost everyone with scleroderma also has Raynaud's disease, an extreme sensitivity to cold in the hands and feet. Raynaud's disease causes blood vessels to constrict and fingers and toes to turn white, resulting in stinging pain and discomfort.
Battling Toxic Exposure
Just what causes most cases of this relatively rare disease is not known, says David Pisetsky, M.D., medical adviser to the Arthritis Foundation and author of The Duke University Medical Center Book of Arthritis. A clue to the cause is provided by the occurrence of similar problems in people who have been exposed to environmental chemicals such as polyvinyl chloride (found in soft plastics) and trichlorethylene (a grease dissolver used in manufacturing and dry cleaning). Coal miners may develop scleroderma after years of work, and outbreaks of similar connective tissue diseases have been associated, in Spain, with contaminated cooking oil and, in the United States, with contaminated tryptophan, an amino acid supplement used to treat insomnia.
Doctors treat scleroderma with drugs that suppress the immune system and reduce inflammation. They may also recommend medications that help the heart and kidneys function better. Antibiotics and drugs that stimulate gut motility, or the movement of food from one end of the digestive tract to the other, can combat the bacterial overgrowth and absorption problems that sometimes accompany scleroderma.
Nutrition isn't thought to play much of a role in the development or progression of scleroderma. "But nutrition does play an important role in maintaining the best possible health despite the disease," says Sheldon Paul Blau, M.D., clinical professor of medicine at the State University of New York at Stony Brook and co-author of Living with Lupus.
Most doctors who offer nutritional therapy to their patients with scleroderma are helping them to absorb nutrients more easily by recommending liquid or intravenous feedings and supplements, says Dr. Blau. Some doctors, he says, further suggest dietary changes and add nutrients that are thought to help reduce inflammation and stress on organs such as the heart and kidneys. Here's what they recommend.
Inflammation Fighters
Doctors agree: Scleroderma starts with inflammation, and its progress depends on how much inflammation continues to occur in the body. That's one reason some doctors recommend that patients with any sort of inflammatory disease--rheumatoid arthritis, lupus or scleroderma--make sure they are getting optimum amounts of vitamin E, selenium and beta-carotene, a yellow pigment found in dark green, leafy vegetables and in orange and yellow fruits and vegetables. These nutrients, known as antioxidants, are thought to help to dampen inflammation by neutralizing some of the biochemicals associated with the process.
Inflammation produces unstable molecules called free radicals, which damage a cell by grabbing electrons from healthy molecules in the cell's outer membrane. Antioxidants offer free radicals their own electrons, disarming the free radicals and saving cells from harm.
As yet there hasn't been much in the way of actual scientific study of the use of antioxidants to treat scleroderma. In one study using laboratory animals, supplemental vitamin E helped prevent calcium deposits in soft tissues, which can be a problem for people with scleroderma. In another study, three people with scleroderma who took 800 to 1,200 international units of vitamin E daily had reductions in the stiffness and hardness of their hands, reductions in calcium deposits in soft tissues and, in two of these people, healing of ulcerated fingertips.
And studies of animals with another, more common inflammatory disease, lupus, do show that these nutrients can help stop damage from inflammation, says Dr. Blau.
He recommends daily intake of 1,000 international units of vitamin E, 25,000 international units of beta-carotene and a multivitamin/mineral supplement that includes 50 micrograms of selenium and 15 milligrams of zinc. (Zinc is used by the body to produce a free radical-quenching enzyme.) Vitamin E in doses exceeding 600 international units daily can cause side effects, so it's a good idea to talk to your doctor about supplementing in this high amount.
Dr. Blau does not recommend supplemental vitamin C for people with scleroderma, however. (Vitamin C is also an antioxidant.) That's because vitamin C promotes the body's production of collagen, and scleroderma involves the overproduction of collagen. In fact, one study attempted to treat scleroderma by putting people on a very low vitamin C diet. "We never found out whether a vitamin C-deficient diet helped," Dr. Blau explains. "Vitamin C is found in so many foods that it was impossible to keep people on a C-deficient diet." He does not tell his patients with scleroderma to avoid eating vitamin C-rich foods.
Vitamin E and beta-carotene are considered safe, even in fairly large amounts. But if you have scleroderma, check with your doctor before you take supplements of these or any other nutrients, especially if you have kidney damage or high blood pressure, Dr. Blau cautions.
| Food Factors Doctors agree: If you have scleroderma, healthy eating habits can help you function better. Here's what they recommend. Subtract fat. Chances are you've heard this advice a few times before, as prevention for heart disease and cancer. In the case of a chronic inflammatory condition such as scleroderma, you'll want to cut back on the fat in your diet, especially saturated fat, because fat helps fuel the fire of inflammation. High-fat meals are also harder to absorb than low-fat meals. To do this, stick to low-fat dairy products, lean meats and reduced-fat salad dressings. "I tell people to eat mostly vegetarian," says Sheldon Paul Blau, M.D., clinical professor of medicine at the State University of New York at Stony Brook and co-author of Living with Lupus. Fill in with fish. The oil in fatty fish such as mackerel, salmon and tuna actually has a mild anti-inflammatory effect, Dr. Blau says. Some people take fish oil capsules, but since you want to stay low-fat, a better tactic may be to replace high-fat dishes such as macaroni and cheese with broiled fish, he says. Use yogurt to your advantage. Although antibiotics may be essential to knock out harmful bacteria in your digestive system, these powerful medications also destroy helpful bacteria. Eating plenty of yogurt or taking acidophilus tablets restores these friendly bacteria to the bowel, which helps protect it from a new bout of harmful overgrowth, says Dr. Blau. |
| Prescriptions for Healing Although most doctors do not recommend supplements to people with scleroderma, some doctors say they've found that certain supplements may help the two biggest problems that people with scleroderma face: malabsorption and inflammation. Here's what they recommend. Nutrient Daily Amount
Beta-carotene 25,000 international units Selenium 50 micrograms Vitamin B12 1,000 micrograms Vitamin E 1,000 international units Zinc 15 milligrams Plus a multivitamin/mineral supplement containing the Daily Values of all essential vitamins and minerals
MEDICAL ALERT: If you have scleroderma and wish to take these nutrients, you should discuss it with your doctor, especially if you have kidney damage or high blood pressure. Vitamin E in doses exceeding 600 international units daily can cause side effects, so it's a good idea to talk to your doctor about supplementing in this high amount. If you are taking anticoagulant drugs, you should not take vitamin E supplements. |
Fighting Absorption Problems
Perhaps the biggest nutritional problem that people with scleroderma face is malabsorption. Their intestines absorb less than normal amounts of nutrients from foods because of scarring and bacterial overgrowth. Doctors often recommend treatment with antibiotics to knock out the bad bugs and help restore some absorption. But some people also require liquid nutritional supplements or, in some cases, intravenous nutrition.
But even people who don't require special feeding formulas can benefit from taking a multivitamin/mineral supplement, says Dr. Blau. "These people have an especially hard time absorbing the fat-soluble vitamins A, D, E and K, and they can develop an array of symptoms associated with deficiencies of these nutrients if they do not get adequate amounts," he says.
Dr. Blau says he has seen people with scleroderma develop softened bones from a lack of vitamin D and hemorrhaging from a lack of vitamin K. That's one reason he urges people with scleroderma to see a rheumatologist (a doctor who specializes in these sorts of diseases) for their care.
"These symptoms are not a normal course of scleroderma, and you need to see a doctor who knows what symptoms can be prevented with proper nutrition," he says.
In addition to deficiencies of fat-soluble vitamins, people with scleroderma are at particular risk for vitamin B12 deficiency, says Dr. Blau. Fatigue, memory loss and abnormal gait can be signs of low B12 levels. Most people with absorption problems require injections of B12 to restore blood levels to normal. Oral doses of 1,000 micrograms a day (well above the Daily Value of 6 micrograms) may maintain normal blood levels in people with only minor absorption problems, he says.
