Because scleroderma can take so many forms and affect so many different areas of the body, it can be difficult to diagnose.
After a thorough physical exam, your doctor may suggest blood tests to check for elevated blood levels of certain antibodies produced by the immune system. He or she may remove a small tissue sample (biopsy) of your affected skin so that it can be examined in the laboratory for abnormalities.
Your doctor may also suggest breathing tests (pulmonary function tests), a CT scan of your lungs and an echocardiogram of your heart.
In some cases, the skin problems associated with scleroderma fade away on their own in three to five years. The type of scleroderma that affects internal organs usually worsens with time.
No drug has been developed that can stop the underlying process of scleroderma — the overproduction of collagen. But a variety of medications can help control scleroderma symptoms or help prevent complications. To accomplish this, these drugs may:
- Dilate blood vessels. Blood pressure medications that dilate blood vessels may help prevent lung and kidney problems and may help treat Raynaud's disease.
- Suppress the immune system. Drugs that suppress the immune system, such as those taken after organ transplants, may help reduce scleroderma symptoms.
- Reduce stomach acid. Medications such as omeprazole (Prilosec) can relieve symptoms of acid reflux.
- Prevent infections. Antibiotic ointment, cleaning and protection from the cold may help prevent infection of fingertip ulcers caused by Raynaud's disease. Regular influenza and pneumonia vaccinations can help protect lungs that have been damaged by scleroderma.
- Relieve pain. If over-the-counter pain relievers don't help enough, you can ask your doctor to prescribe stronger medications.
Physical or occupational therapists can help you to:
- Manage pain
- Improve your strength and mobility
- Maintain independence with daily tasks
Used as a last resort, surgical options for scleroderma complications may include:
- Amputation. If finger ulcers caused by severe Raynaud's disease have developed gangrene, amputation may be necessary.
- Lung transplants. People who have developed high blood pressure in the arteries to their lungs (pulmonary hypertension) may be candidates for lung transplants.
Lifestyle and home remedies
You can take a number of steps to help manage your symptoms of scleroderma:
- Stay active. Exercise keeps your body flexible, improves circulation and relieves stiffness. Range-of-motion exercises can help keep your skin and joints flexible.
- Don't smoke. Nicotine causes blood vessels to contract, making Raynaud's disease worse. Smoking can also cause permanent narrowing of your blood vessels. Quitting smoking is difficult — ask your doctor for help.
- Manage heartburn. Avoid foods that give you heartburn or gas. Also avoid late-night meals. Elevate the head of your bed to keep stomach acid from backing up into your esophagus (reflux) as you sleep. Antacids may help relieve symptoms.
- Protect yourself from the cold. Wear warm mittens for protection anytime your hands are exposed to cold — even when you reach into a freezer. When you're outside in the cold, cover your face and head and wear layers of warm clothing.
Coping and support
As is true with other chronic diseases, living with scleroderma can place you on a roller coaster of emotions. Here are some suggestions to help you even out the ups and downs:
- Maintain normal daily activities as best you can.
- Pace yourself and be sure to get the rest that you need.
- Stay connected with friends and family.
- Continue to pursue hobbies that you enjoy and are able to do.
Keep in mind that your physical health can have a direct impact on your mental health. Denial, anger and frustration are common with chronic illnesses.
At times, you may need additional tools to deal with your emotions. Professionals, such as therapists or behavior psychologists, may be able to help you put things in perspective. They can also help you develop coping skills, including relaxation techniques.
Joining a support group, where you can share experiences and feelings with other people, is often a good approach. Ask your doctor what support groups are available in your community.
Preparing for your appointment
You'll probably first bring your symptoms to the attention of your family doctor, who may refer you to a rheumatologist — a doctor specializing in the treatment of arthritis and other diseases of the joints, muscles and bone. Because scleroderma can affect many organ systems, you may need to see a variety of medical specialists.
What you can do
Appointments can be brief. To make the best use of the limited time, plan ahead and write lists of important information, including:
- Detailed descriptions of all your symptoms
- A list of all your medications and dosages, including nonprescription drugs and supplements
- Questions for the doctor, such as what tests or treatments he or she may recommend
What to expect from your doctor
Your doctor may ask some of the following questions:
- Do your fingers become numb or change colors when you get cold or upset?
- Do you regularly experience heartburn or swallowing problems?
- Have your parents or siblings ever had similar signs and symptoms?