Tips for Living with Scleroderma
Ways to help manage your symptoms
The Scleroderma Research Foundation does not provide medical advice, nor does it endorse any drug treatment suggested herein. The following suggestions in no way are meant to substitute for professional medical advice.
Scleroderma can take several different forms, and even within the same form the progression and severity of symptoms can vary greatly from patient to patient. In some patients, symptoms will develop with a surprising rapidity while, in others, symptoms may take years to develop. This makes the course of the disease unpredictable. At present, there is no known cure for scleroderma, but there are means available to help patients manage the symptoms. Patients should be aware that due to the unpredictable nature of the disease, spontaneous improvement of symptoms may occur and may continue for lengthy periods. Patients experiencing such remissions should be very cautious about attributing these remissions to a particular diet, drug or treatment.
There are measures one can take to minimize or alleviate symptoms of scleroderma. Due to the varied nature of the disease, the response to each treatment will be different from person to person. A patient should not attempt any treatment option without first consulting a physician.
Jump to a topic: Raynaud's Phenomenon, Skin Ulcers, Stiff and Painful Joints, Skin Problems, Dental and Mouth Problems, Gastrointestinal Problems, Lungs, Heart, Kidneys
Suggestions to support your general health post-diagnosis
There are some simple steps you can take to help maintain your general health:
- Don’t smoke, drink alcohol or caffeine or use recreational drugs.
- Get sufficient sleep.
- Try to avoid stress as much as possible. Yoga, meditation and biofeedback may help you manage stress and anxiety.
- Avoid processed foods, sugar and soda.
- Echinacea boosts the immune system. Since scleroderma is an auto-immune disease, it is recommended that patients avoid this herb.
Reduce your exposure to cold as much as possible. Exposure to cold temperatures—even reaching into the freezer or sitting in an air conditioned room—can bring on a Raynaud’s attack. Dress warmly, in layers, wear socks and shoes and keep a sweater and gloves or mittens handy. Stay inside when the weather is cold. Moving to a warmer climate and vacationing in warm weather areas can help lessen the severity of Raynaud’s.
Stress can also lead to Raynaud’s attacks. Learning and practicing relaxation techniques, including biofeedback, can help reduce Raynaud’s attacks and, in fact, help you cope with the many challenges of living with a chronic disease.
Avoid birth control pills and migraine medication because they also constrict blood vessels. Consult with your doctor if you currently take either of these types of medicine.
Ask your doctor about calcium channel blockers. Calcium channel blockers affect the movement of calcium into the cells of the heart and blood vessels, increasing the supply of blood and oxygen to the heart while reducing the heart’s workload. These drugs can relax blood vessels and may slow the heart rate.
If you smoke, it is recommended that you quit. Nicotine further constricts the blood vessels, which can make Raynaud’s worse.
The following supplements may help improve circulation:
- Co-enzyme Q10 improves tissue oxygenation.
- Vitamin E improves circulation and acts as an anticoagulant, dissolving clots in lungs, legs and heart.
- A vitamin B complex that includes B3 and niacin. Niacin dilates small arteries improving circulation, but do not ever exceed 100 mg daily or take niacin if you have liver disease, gout or high blood pressure.
Eat plenty of raw foods – about 50% of your diet – especially dark, leafy greens to provide chlorophyll and other nutrients. Avoid fried and fatty foods.
Regular exercise will help circulation.
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Skin sores, commonly referred to as ulcers, most often occur on the fingers or toes and are called digital ulcers. Ulcers can also occur on other areas, including joint surfaces like the elbow. Painful and difficult to heal, ulcers are considered to have a major negative impact on quality of life for scleroderma patients.
Persistent Raynaud’s attacks contribute to the development of ulcers, which can be brought on by cuts, abrasions or other trauma to the skin. Controlling Raynaud’s attacks through medication and the management techniques described above is a primary line of defense. Protecting your skin is another. Exercise caution and protect hands, feet and other areas by wearing gloves when working, gardening and cleaning. Wear protective clothing whenever you are active. Avoid coming into contact with abrasive/caustic substances.
If you develop an ulcer, keep the ulcerated area clean and protected. See your doctor as soon as possible if you suspect infection, which is common with ulcers. If left untreated, infection can increase the pain and spread to deeper tissues, leading in severe cases to actual loss of a fingertip, toe or other affected area.
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Stiff, Painful Joints
Keeping joints limber and flexible can help you maintain as much of your normal activity as possible. A well-designed program of regular stretching and gentle exercise, under the direction of a physical therapist, can be helpful in maintaining range of motion in your joints, minimizing joint contractures and improving circulation. In addition, an appropriate level of exercise can promote relaxation and a sense of well-being. Warm whirlpool baths, molten paraffin application to the hands and therapeutic massage by a medically qualified professional are also helpful for the joints.
Swimming can be beneficial for joints and muscles if the water is sufficiently warm.
Ask your doctor about acetaminophen and nonsteroidal anti-inflammatory (NSAID) drugs. These drugs relieve joint and muscle pain and inflammation by blocking substances in the body that cause inflammation and pain. The NSAIDs are “COX-2 inhibitors.”
Ginger is a powerful anti-oxidant that has anti-inflammatory properties. Ginger inhibits pain-producing prostaglandins.
Turmeric contains curcumin, which also has anti-inflammatory and pain relieving properties.
Tart red cherries can relieve pain and inflammation if eaten in doses of about 20 per day.
If daily tasks like brushing your teeth and hair, buttoning clothes or washing dishes become difficult due to pain and stiffness, consult an occupational therapist to learn new ways to perform these tasks, allowing you to protect the joints and reduce the pain.
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The build-up of collagen in the skin can affect the normal functioning of sweat and oil glands, leaving the skin dry and stiff. Moisturize frequently with oil-based creams or lotions, especially after washing hands or bathing.
- Avoid harsh soaps and extreme water temperatures when washing and bathing.
- Use humidifiers to help keep skin soft with moist air.
- Always protect your skin against the outside elements by wearing protective clothing and sunscreen.
- Regular exercise will help circulation.
- You may want to consider bathing less if your skin gets seriously dry.
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Dental and Mouth Problems
Several different complications of scleroderma converge to make mouth and dental care challenging. Tight, thick skin and a gradual reduction in the size of the mouth, and excessive dryness of the mouth from damage to the salivary glands are the two principal conditions that make oral hygiene and dental health difficult to maintain. Eating and speaking can also be difficult.
Work with your dentist, dental hygienist and perhaps an occupational therapist to devise effective ways to brush, floss and maintain daily oral hygiene. If hands are stiff and painful, different toothbrush styles and handles and special devices for flossing may help. Your dentist may prescribe special rinses and toothpastes that will provide greater protection against decay. Schedule regular dental check-ups and contact your dentist right away in the event of mouth pain, sores or loose teeth.
Drink liquids, particularly water, throughout the day, eat soft moist foods and suck on ice chips or hard candy to keep your mouth moist. If drinking from a glass is difficult, use a straw or specially-designed cup.
Avoid alcohol, tobacco, dry bulky foods and mouthwashes that contain alcohol, which can all be drying.
Brush or rinse after eating to keep mouth clean and moist. For more serious mouth dryness, ask your doctor about prescription saliva stimulants or substitutes. You may also want to ask about fluoride rinses or prescription toothpastes to remineralize and harden tooth enamel.
Facial exercises are considered effective in promoting flexibility of the mouth and face. Consult a physical therapist who can recommend and monitor appropriate exercises and stretching devices.
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Swallowing difficulties, heartburn and elimination issues such as diarrhea or constipation can all plague scleroderma patients. There are a number of measures you can take to manage these symptoms and maintain a greater level of comfort.
Eliminate foods that give you heartburn or gas. These may include spicy or fatty foods, caffeinated or carbonated beverages, acidic foods and juices and other foods such as cabbage, garlic, onions and broccoli, as well as alcohol.
Over-the-counter antacids can also reduce the symptoms of heartburn. If you experience persistent heartburn, ask your doctor about proton pump inhibitors, which decrease stomach acid production, minimizing gastrointestinal reflux disease and help prevent esophageal ulcers.
To make swallowing easier and further reduce heartburn, eat small frequent meals, emphasize moist soft foods, drink liquids while eating and chew foods well.
Eat some form of fiber such as ground flaxseeds, oat bran or rice bran daily.
Avoid lying down or reclining for at least two hours or more after eating to keep stomach contents from backing up into the esophagus. Raise the head of your bed so you’re sleeping at an incline.
Fluids, especially water, are helpful for constipation. Ask your doctor for a list of foods for either constipation or diarrhea, and discuss the available prescription medications that could help.
See your doctor immediately if you have fatigue, shortness of breath, difficulty breathing or swollen feet.
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Because certain parts of the lungs are made up of collagen, scleroderma patients sometimes have problems with their lungs due to the over-production of collagen that is characteristic to this disease. The increasing thickness in the lungs makes it harder for oxygen to get through to the capillaries. These circumstances may lead to pulmonary fibrosis or pulmonary arterial hypertension.
To treat pulmonary fibrosis (hardening or scarring of lung tissue due to excess collagen), ask your doctor about immunosuppressant drugs, including cyclophosphamide (Cytoxan) or azathioprine (Imuran), with low doses of corticosteroids.
To treat pulmonary arterial hypertension, ask your doctor about the prostaglandin and prostacylin vasodilators, including iloprost (Ventavis®), treprostinol (Remodulin®), bosentan (Tracleer®), beraprost and epoprostenal (Flolan®). Prostaglandins and prostacylins work by relaxing blood vessels and increasing blood to the lungs.
If you experience breathing difficulty, consider the following:
- Have your doctor regularly check your lungs with standard lung-function tests, especially during the early stages of skin thickening to find symptoms of lung damage early.
- Stop smoking. Smoking will exacerbate lung problems.
- Improve reflux. Sometimes acid reflux will aggravate breathing difficulties. See the above section on Gastrointestinal Problems for tips to improve reflux.
- Take medications as prescribed by your doctor.
- Arrange for home oxygen therapy if recommended by your doctor.
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You may have chest pain that seems like it involves the heart, but often chest pain in scleroderma comes from acid reflux. Acid reflux is a gastrointestinal problem.
Sometimes people with scleroderma experience heart disease and the most common symptom is an irregular heartbeat – called an arrhythmia. Common indications of arrhythmias are light-headedness, palpitations, irregular pulse and fainting or dizziness. This may occur because scleroderma scar tissue blocks the path of the natural electrical current that controls heart rhythms.
Your doctor may suggest an EKG to test for an abnormal heart rhythm. Sometimes the EKG may not pick up the abnormal heart rhythm even though you are experiencing symptoms. In such cases, your doctor may ask you to wear a portable Holter monitor (ambulatory electro-cardiography device) for a period of time. It can pick up heart irregularities that happen periodically and may be missed in the short time an EKG monitor is recording. Medication is usually prescribed to control arrhythmias, although sometimes a pacemaker may be necessary.
Consult your doctor for treatments if you suspect scarring and weakening of the heart (cardiomyopathy) or inflamed heart muscle (myocarditis). Treatments may include drugs or surgery.
Check your blood pressure frequently.
Take medications only as prescribed by your doctor. Carefully comply with the doctor’s orders to take ACE (angiotensin-converting enzyme) inhibitors like captopril (Capoten®), enalapril (Vasotec®) and quinapril (Accupril®). ACE inhibitors block the formation of angiotensin II, an enzyme that narrows blood vessels. Less angiotensin II causes the blood vessels to relax and lowers blood pressure, increasing the supply of blood and oxygen to the heart.
See your doctor immediately if your blood pressure becomes elevated!
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Scleroderma affects the kidneys in ten percent of the patient population. Kidney involvement in scleroderma tends to occur in the first five years after diagnosis and most often in patients with diffuse skin involvement (skin thickness that reaches the upper arms and trunk). Because your kidneys are the organs which remove wastes from your blood, any malfunction of your kidneys may cause these wastes to build in your blood and damage your body.
Kidneys can be damaged from scleroderma due to a sudden and severe increase in blood pressure called malignant phase hypertension. Unlike the usual type of hypertension, which starts slowly and can take years to damage kidneys, malignant phase hypertension can go from normal levels to dangerously high levels in a matter of days. If it continues without treatment, the kidneys can be permanently damaged.
See your doctor immediately if your blood pressure becomes elevated!
To try and prevent kidney damage:
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- Check your blood pressure frequently. Use a home blood pressure monitor at least twice a week. If it starts to go up, start checking it every day or as recommended by your doctor. Your readings should not go over 150 (high number) and 90 (the low number).
- Contact your doctor immediately if your blood pressure readings for either number are high. Also call your doctor if your readings are higher than normal, even if it does not go above the upper limits stated previously.
- Get your blood pressure down right away if it starts to go up. This means you need to get frequent blood tests to check how well your kidneys are functioning. Oftentimes your doctor will modify your medication dosage. Many patients are hospitalized if a scleroderma renal crisis is suspected.
- Decrease the amount of sodium in your diet. Stay away from salts, soy sauces, commercially canned goods like soups, beans and sauces. You can still add flavor to your foods by using herbs and (salt-free) spices.
- Make sure you get adequate fluids, especially water, throughout the day.