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Treatment | Systemic Sclerosis | Scleroderma
Being diagnosed with a chronic disease like systemic sclerosis can be frightening. The first thing is don’t panic. Although you might have been diagnosed with systemic sclerosis, you are not alone. Most people have the milder form of the disease. And remember, the disease can be very different for different people. In anyone who has systemic sclerosis, there are things that can be done to prevent the symptoms from getting worse and provide treatment to help relieve the symptoms.
The most important thing if you have systemic sclerosis or think you may have systemic sclerosis is to see your doctor who should refer you to a rheumatologist. A rheumatologist is a specialist doctor who is an expert in treating various forms of arthritis and rheumatic diseases such as systemic sclerosis (scleroderma).
Here are some recommendations on what you should do if you have systemic sclerosis:
- Learn about it. Education can be powerful and we’ve aimed to develop this RheumInfo website to be accessible and easy to understand for everyday people living with systemic sclerosis and other forms of inflammatory arthritis
- Attend your medical appointments regularly
- Get your tests done as suggested including blood tests, echocardiogram and other tests such as breathing tests and X-rays
- Learn about the medications used to treat systemic sclerosis. The RheumInfo website has many interactive and valuable tools to help you understand these medications and their impact on your disease
- Another valuable resource for patients is the Scleroderma Foundation website (www.scleroderma.org).
Treatment of systemic sclerosis
Because systemic sclerosis has a variety of features, your treatment plan will be tailored just for you. There are effective treatments available that can help relieve the symptoms of systemic sclerosis that bother you. Although they do not cure the disease, they can make living with systemic sclerosis more comfortable.
There are a number of treatment options available depending on what bothers you and what organs are involved. Therapy such as range of motion of your hands and physical or occupational therapy to improve hand function with aids, splints etc. are important for many patients. Preventive strategies also play an important role in managing systemic sclerosis.
Medications for systemic sclerosis
There are many medications that can be used to relieve the symptoms of systemic sclerosis. The choice of medications will depend on your specific symptoms.
Medications that relax the blood vessels (dilate them, decrease spasm) can be helpful for the symptoms of Raynaud’s. They can decrease the number of Raynaud’s episodes and possibly the severity of the Raynaud’s attacks.
Medications called proton pump inhibitors or PPIs can help relieve symptoms of heartburn or acid reflux. When the digestive tract is involved, medications that promote motility (bowel contractions) such as domperidone can help. Antibiotics can decrease small bowel bacteria when bloating, early fullness and diarrhea are bothersome.
Swollen and inflamed joints may be treated with medications used for people with rheumatoid arthritis. These include NSAIDs, analgesics, prednisone, and disease-modifying anti-rheumatic drugs (DMARDs).
In more severe disease with lung, kidney or heart involvement, immune suppressing medications or disease modifying drugs may be used.
Fatigue is a common symptom in people with systemic sclerosis. It’s also one of the most difficult symptoms to treat. Learning how to balance the demands in your life with your need to rest can go a long way.
For more information about specific medications used to treat systemic sclerosis, refer to the “pictopamphlets” in the Medications section of this website.
Treatment of Raynaud’s
Medications that relax the blood vessels can help to reduce high blood pressure. Examples include calcium channel blockers (Adalat). Medications called sildenafil (Viagra) or tadalafil (Cialis) are sometimes used in people with Raynaud’s Phenomenon to relax the muscles in the blood vessel walls to promote better circulation in the fingers and toes. Other drugs that open or dilate blood vessels may be considered but they can cause low blood pressure (light headedness). Topical drugs such as nitrates may be considered. When Raynaud’s is severe an intravenous medicine called iloprost can be very effective to help heal sores on the fingertips and improve circulation in the hands and feet.
Treatment of Heartburn or Acid Reflux
Proton pump inhibitors or “PPIs” for short are medicines that help reduce heartburn. They work by reducing the amount of acid produced by the stomach. They can also help relieve symptoms of burning in the swallowing tube or upper belly area, indigestion, stomach upset, and nausea. Other tips to help you reduce heartburn include:
- Raise the head of your bed by 6-8 inches (15-20 cm)
- If you have acid in your mouth or throat while sleeping, don’t eat after supper
- Eat smaller, more frequent meals
- Avoid foods that make heartburn worse. For many people these are alcohol, spicy foods, caffeine, and chocolate.
If you are full early or losing weight without trying especially due to gut issues, you should see your doctor. Consider frequent small meals to increase your calorie intake and possibly nutritional supplements such as high protein or calorie drinks.
Treatment of Slow Moving Bowels
Medicines that help move food through the digestive system more quickly are called “motility agents” or sometimes “prokinetic medications.” Some examples are domperidone, prucolapride, and erythromycin. These medications work by stimulating the swallowing tube and small intestine to increase the frequency of contractions. Motility agents can also help reduce symptoms of heartburn.
Treatment of Food Sticking or Problems Swallowing
You may have food that sticks behind the breast bone and/or problems having the food transit down the entire swallowing tube. Some medications can help the transit of food such as domperidone. Dilatation (widening) of the lower end of the swallowing tube may help with food sticking. Tell your health care provider if you have these problems. A procedure that stretches the swallowing tube may help.
Treatment of pain in the joints
Non-Steroidal Anti-Inflammatory Drugs (NSAIDs)
Non-Steroidal Anti-Inflammatory Drugs or NSAIDs are medications that reduce inflammation. They also help to reduce symptoms such as pain. These medications may be used in people with systemic sclerosis who have arthritis in their joints. Some types of NSAIDs can be hard on the kidneys – be sure to check with your rheumatologist before taking any NSAIDs. Luckily there are about 20 different anti-inflammatory medications available. So if one doesn’t work for you, try another. Note, they can worsen the heartburn or gut upset.
Medications like prednisone can help control inflammation. Prednisone can be helpful in some people with systemic sclerosis who have joint inflammation and pain. When used for long periods of time, prednisone can have side effects such as thinning of the bones (osteoporosis). If you take prednisone especially early in your disease and you have the diffuse kind of systemic sclerosis, prednisone can cause severe high blood pressure (kidney crisis). You should monitor your blood pressure carefully if your doctor thinks you are at high risk for this complication. You should discuss the risks and benefits of using prednisone with your rheumatologist. Some patients also benefit from cortisone injections directly into a joint or bursa or tendon sheath.
Analgesic medications only control pain. They can range from simple things like acetaminophen (Tylenol) to more potent narcotics like morphine.
Immune System Modifiers
These drugs target the immune system. Commonly used ones in systemic sclerosis include methotrexate, hydroxychloroquine, azathioprine and mycophenylate mofetil. They can be helpful in people with systemic sclerosis who also have arthritis in their joints and/or organ involvement. It can take a few months before they noticeably take effect.
Other medications such as cyclophosphamide can be used to help control lung and skin inflammation and fibrosis. Every case is different and should be discussed with a rheumatologist.
Antibiotics & Systemic Sclerosis
Antibiotics do not alter the overall disease and are not recommended unless if there is an infection or small bowel overgrowth.
Exercises for Systemic Sclerosis
Physical therapy, occupational therapy and exercise can be very important in your overall treatment plan. They can reduce or prevent contractures, and improve range of motion and overall fitness. The right stretching and exercises, if needed, can improve function. They should be done daily to derive the maximum benefit.
A trained arthritis physiotherapist can help design an exercise program tailored to you and your needs. An occupational therapist can help you learn how to protect your body and joints. For example, there are ways you can position your joints to avoid extra stress. In some cases, assistive devices and splinting can help.
Preventive strategies for systemic sclerosis
Good skin care is important in people who have systemic sclerosis. Keep the skin hydrated with creams and moisturizers to prevent painful cracks. Try not to bathe or shower and wash as often if you have dry skin. A humidifier can also help keep the air in your home moist during the winter months. Any breaks in the skin should be carefully watched for infection.
People with Raynaud’s are sensitive to cold temperatures. The best way to keep your hands and feet warm is to keep your core body warm. Wearing a hat, mittens, warm socks and thermal underwear in colder weather can help keep the body warm. Hand and feet warmers are also helpful. If you have Raynaud’s you should quit smoking as smoking can worsen it.
Natural or home remedies for systemic sclerosis
There are no known natural remedies or complementary therapies that have been proven to help systemic sclerosis in any significant way. Nevertheless, if you choose to use natural remedies or complementary therapies, you should check with your doctor or rheumatologist. Some medications may interact with these products.
Diet for systemic sclerosis
Questions about diet and rheumatic diseases are very common. We all want to know what we can do to help ourselves. Can we change our diet to improve our immune system and help our systemic sclerosis? Changing our diet gives us a sense of control over a disease which often seems to have a mind of its own.
Unfortunately, there is no diet that has been proven to significantly alter the course of systemic sclerosis or other types of rheumatic diseases. Following the basics of healthy eating can help improve health and well-being in everyone, including those with systemic sclerosis. Try to eat foods that don’t stick in your swallowing tube, or aggravate your heartburn. Most people cut their food into very small portions and chew food well and eat slowly. Some find drinking water with a meal helps.
Eating small, frequent meals can help reduce the discomfort of heartburn. If you suffer from heartburn, try to limit your intake of caffeine, alcohol and acid-producing foods. These beverages and foods can aggravate heartburn.
It’s a good idea to keep a glass of water close by when eating or at night if you have a dry mouth. When dry mouth is severe, it can cause problems swallowing and result in choking.
Alcohol and systemic sclerosis
Many of us like to share a glass of wine, a beer, or a spirit from time to time. Unfortunately, due to the nature of systemic sclerosis, some people may turn to alcohol to help cope with the pain and distress. Alcoholic beverages are not an effective treatment for systemic sclerosis. They can also aggravate heartburn. Sometimes, alcoholic beverages can interact with your medications.
Smoking and systemic sclerosis
Cigarette smoking, whether you have systemic sclerosis or not, has no positive effects on any aspect of your health. Smoking makes your blood vessels contract, which can make Raynaud’s Phenomenon worse. If you are a smoker with systemic sclerosis, quitting could be one of the best things you can do to improve your overall health.
Systemic sclerosis is a very rare disease that can affect many organ systems. There are two main types of systemic sclerosis – limited and diffuse. Every patient with systemic sclerosis is different and thus treatment needs to be individually tailored. Every patient with systemic sclerosis should be evaluated and followed by a rheumatologist who is an expert in this disease.