Treatment

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As with many chronic illnesses such as high blood pressure, diabetes or asthma, there is no cure for scleroderma. However, there is effective treatment for many of the symptoms. Treatment will be determined by the type and severity of your particular symptoms. If you have been diagnosed with scleroderma, you may need to consult a team of health care professionals, including a rheumatologist and a dermatologist.

Some treatments may work on one patient and not another, and some may lose their efficacy over time. What makes identifying successful treatments particularly difficult is that, in some patients, scleroderma can go into unexplained remission, which may give the impression that a particular course of treatment was effective even if it wasn't.

Your health care professional—perhaps a physical therapist—can help you learn techniques to protect swollen and painful joints. This can involve learning different ways to perform such daily tasks as dressing, brushing your teeth and driving.

You and your health care professional need to be alert for any changes in your health; it's particularly essential to regularly monitor blood pressure, blood counts, urinalysis and kidney and lung function.

Various medications can be prescribed to reduce skin thickening and delay internal-organ involvement. Results are mixed. Be sure to discuss possible side effects with your health care professional. If you decide to start taking medications, you and your health care professional should monitor the effects carefully; some of these drugs can be toxic

• Calcium channel blockers. These drugs increase blood flow by interrupting the normal flow of calcium into and out of the cells that make up the blood vessels and narrow arteries. They are prescribed to people with Raynaud's phenomenon and may help with the myocardial fibrosis that occurs in some people with scleroderma. Common side effects include low blood pressure, dizziness or lightheadedness, headache, nausea, leg swelling and irregular heartbeats.

• Angiotensin-converting enzyme (ACE) inhibitors. These drugs interfere with the body's chemical processes that constrict blood vessels, and they help alleviate the high blood pressure sometimes associated with scleroderma. Common side effects include dry persistent cough, rash and dizziness.

• Antiplatelet drugs. Antiplatelet therapy in the form of low-dose aspirin inhibits blood clotting.

• Glucocorticoids. These drugs may be used in low doses to relieve scleroderma-related pericarditis (inflammation of the membrane surrounding the heart) and myositis (inflammation of the muscles). The topical form may also be used on lesions of localized scleroderma. These medications also have serious side effects at high doses: osteoporosis; mood shifts; fragile, easily bruised skin; fluid retention and weight gain; muscle weakness; onset or worsening of diabetes; cataracts; and increased risk of infection. Note: Corticosteroids (also called glucocorticoids) strongly increase the short-term risk of developing scleroderma renal crisis (kidney failure), and they cause a 70 percent increased risk of developing pneumonia.

• Diuretics. These are used to relieve swelling of the hands and feet. Side effects can include fatigue, stomach upset and low potassium levels.

• Immunosuppressants. Cytoxan (cyclophosphamide) is often used to treat the lung fibrosis associated with scleroderma. Recent studies on scleroderma demonstrate promising results in the treatment of interstitial lung disease with Cytoxan. Eye drops containing the immune suppressing drug cyclosporine can improve dry eye symptoms, while methotrexate (brand names Rheumatrex and Trexall), often used in higher doses to treat cancer, may be prescribed for its ability to alter the way the immune system works.

Other medications may be used for specific or localized symptoms. For instance, nitroglycerine paste or topical antibiotics can be used to treat fingertip ulcerations.

Nonsteroidal anti-inflammatory drugs (NSAIDs)—such as aspirin, ibuprofen and naproxen—may relieve some of your joint and tendon pain and swelling, as well as the chest pain that sometimes accompanies scleroderma. But NSAIDs can upset your stomach and aggravate the gastrointestinal (GI) symptoms of scleroderma. Plus, there is the potential for cardiovascular events and GI bleeding associated with the use of NSAIDS. It is important to ask your health care professional for safety information associated with pain relievers.

Lung fibrosis leading to pulmonary hypertension is one of the major complications of patients with scleroderma. For treatment of lung fibrosis, some success has been reported with the use of a combination of glucocorticoids and an immunosuppressive drug such as cyclophosphamide (Cytoxan) or azathioprine (Azasan). Treatment options for pulmonary hypertension associated with scleroderma include the endothelin receptor antagonist bosentan (Tracleer), the phosphodiesterase-5 inhibitor sildenafil (Revatio) and various prostacyclin analogs (i.e., epoprostenol [Flolan], treprostinil [Remodulin] and iloprost [Ventavis]). The medical community has concluded corticosteroids should be used cautiously, and only in a carefully screened patient population. For example, they may be used to manage patients who also have muscle inflammation. If you are taking corticosteroids, you should monitor your blood pressure frequently and report any changes to your health care provider immediately.

With advanced lung fibrosis or pulmonary hypertension, the only options may be a single or double lung transplant, sometimes including a heart transplant if heart problems are severe or stem cell transplantation. Of course, pulmonary infections often require antibiotics.

If lifestyle and dietary changes aren't enough to avoid severe gastrointestinal symptoms and over-the-counter antacids don't work, you and your health care professional may want to consider H2 blockers such as Zantac ranitidine (Zantac), cimetidine (Tagamet) or famotidine (Pepcid AC), which reduce the amount of acid produced by the stomach. Proton pump inhibitors such as Prevacid lansoprazole (Prevacid), omeprazole (Prilosec) and similar drugs are more powerful acid reducers and may be necessary. For people who suffer from esophageal hypomotility—a condition where the esophagus is unable to contract normally—health care professionals may prescribe prokinetic drugs such as erythromycin (ERYC).

Some patients also have increased pressure on the lungs, called pulmonary hypertension. Three medicines are available for treating this problem, epoprostenol sodium (Flolan), iloprost (Ventavis) inhalation solution and treprostinil (Remodulin). All lower the pressure in the lung, but all are very expensive (about $30,000 to $100,000 a year) and may be associated with GI symptoms, rashes, and some liver problems. They should be used cautiously.

Lifestyle changes can help mitigate the chronic heartburn (reflux) often associated with scleroderma. Preventive measures such as elevation of the head of the bed and frequent small meals can help. You should try to avoid eating late at night, and you may need to give up alcohol, coffee and tea, since they can increase heartburn.

When systemic sclerosis patients develop heart and kidney complications, they are generally treated much the same as any cardiac or renal patients. ACE (angiotensin-converting enzyme) inhibitors are usually used to treat kidney disease associated with scleroderma. ACE inhibitors are often used to treat high blood pressure.

A scleroderma treatment plan almost always incorporates therapy for Raynaud's phenomenon, which afflicts 80 percent to 90 percent of those with scleroderma. There are some basic lifestyle changes you can make to prevent or decrease the severity of the symptoms: You should dress warmly and limit outdoor activities in cold weather. If you live in the North, you may want to consider moving to a warmer climate. But remember, air conditioning can trigger attacks, so you may want to turn it off or wear a sweater when it's running. You may find that using insulated drinking glasses and wearing gloves to handle frozen or refrigerated food items will help.

This disorder is characterized by episodic attacks, called vasospastic attacks, that cause the blood vessels in the fingers and toes to constrict. During an attack, some of the same guidelines apply. The most important thing is to warm your hands and feet. In cold weather, go inside immediately. You may want to run warm water over your fingers and/or toes or soak them in warm water.

Since stress and emotional upset can trigger an attack, you may want to try to relax. If you are in a stressful situation, get out. In fact, you should learn to identify and avoid stressful situations. Many people with Raynaud's find that exercise helps reduce stress, but check with your health care professional before starting an exercise program.

In addition, if you smoke, stop. Not only is it bad for your overall health, the nicotine in cigarettes causes the skin temperature to drop, which may lead to an attack.

Several medications can relieve Raynaud's symptoms. Calcium channel blockers such as nifedipine (Procardia) and diltiazem (Cardizem), which relax blood vessels, may help. In fact, calcium-channel blockers decrease the frequency and severity of attacks in about two-thirds of Raynaud's sufferers. These drugs also can help heal skin ulcers on the fingers or toes. Unfortunately, they often aggravate heartburn symptoms, so if your esophagus is affected by scleroderma, you may not want to pursue this course of therapy. You and your health care professional need to discuss the benefits and potential dangers of any drug therapy.

You may consider using a nonspecific vasodilator (drug that relaxes blood vessels), such as nitroglycerine paste. You would apply this directly to your fingers to help relieve skin ulcers. Calcium channel blockers used for Raynaud's include nifedipine (Procardia) and diltiazem (Cardizem), as well as pentoxifylline (Trental), a blood thinner. Other drugs used to treat Raynaud's include losartan potassium (Cozaar), doxazosin (Cardura) and prazosin (Minipress).

A word of warning: these medications often have side effects that limit long-term use. Drugs used to treat Raynaud's phenomenon may affect a growing fetus. If you are pregnant or are trying to become pregnant, discuss your treatment options with your health care professional.

If you have been diagnosed with scleroderma, consult your health care professional before planning to have a baby. Until recently, giving birth was considered ill advised for scleroderma patients. But current research offers some good news: A recent study found that women with scleroderma are at no greater risk of having a miscarriage or a premature birth, although they may have a smaller-than-average full-term baby. However, this was a single study; the overall effect of scleroderma on fertility is unknown. If you plan to become pregnant, you may need to adjust your medications and address specific risks with your doctor beforehand. Pregnancy in women with scleroderma is always considered high risk, and extra monitoring and precautions are necessary, both before and during the pregnancy. And patients with rapid onset or severe internal organ involvement may need to postpone pregnancy until the symptoms subside or until toxic treatments are finished. Some women with severe scleroderma may be advised to forego pregnancy or consider adoption or surrogate parenthood instead. Discuss your decision with your health care provider.

Since FDA-approved therapies do not exist specifically for scleroderma, several investigational and alternative treatments are used for skin thickening. But experts stress that nothing has been conclusively proven to be effective. For example, researchers are testing a human anti-TGF beta monoclonal antibody. TGF beta interferes with collagen production, so an anti-TGF beta may be an effective approach to treating scleroderma. Skin thickening is also sometimes treated with other experimental treatments, such as D-penicillamine and phototherapy.

While some patients and health care professionals try alternative or experimental approaches, it's important not to jump to conclusions. Any results are purely anecdotal.