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Scleroderma: Care Instructions

Your Care Instructions

Scleroderma is a disease that affects skin and joints. Sometimes it also affects organs such as the kidneys, esophagus, and lungs. Scleroderma that affects only the skin is called "localized." If it affects organs and skin, it is called systemic scleroderma. Scleroderma is most common in women 20 to 40 years old.

Scleroderma causes the skin to harden and get tight. Your joints may get stiff and swollen. If this disease affects the organs, it can cause more serious problems. Scleroderma that affects your lungs may make it hard for you to breathe. You may have heart failure if scleroderma affects the blood vessels that lead from the heart to your lungs.

Scleroderma cannot be cured, but in some cases the condition may improve over time. The type of treatment depends on whether the disease affects just your skin or other parts of your body. You will have a team of health professionals to help you. These may include a doctor, physiotherapist, psychologist, dentist, and pharmacist. You will probably need medicines to treat symptoms and to prevent long-term problems.

Finding out you have scleroderma is scary. You may feel many emotions and may need some help coping. Seek out family, friends, and counsellors for support. You also can do things at home to make yourself feel better while you go through treatment.

Follow-up care is a key part of your treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse advice line (811 in most provinces and territories) if you are having problems. It's also a good idea to know your test results and keep a list of the medicines you take.

How can you care for yourself at home?

  • Take your medicines exactly as prescribed. Call your doctor or nurse call line if you have any problems with your medicine.
  • Take pain medicines exactly as directed.
    • If the doctor gave you a prescription medicine for pain, take it as prescribed.
    • If you are not taking a prescription pain medicine, ask your doctor if you can take an over-the-counter medicine.
  • If you have trouble using your hands, ask your doctor or physical therapist about ways of doing things or devices that can help you. You can use Velcro instead of buttons on your clothes and get items such as hairbrushes with special handles.
  • Check your blood pressure every day. Call your doctor if it is higher than normal.
  • Get flu and pneumococcal vaccines to prevent lung infections.
  • Use creams or lotions after bathing to help your skin stay soft and flexible. Use sunscreen when you go outside in the summer to prevent skin damage.
  • Get regular exercise. This can help you stay strong and flexible.
  • Brush and floss your teeth every day. Get regular dental care to prevent serious dental problems.
  • Talk to your partner if you have sexual problems.
  • Share your feelings. Stress and tension affect our emotions. By expressing your feelings to others, you may be able to understand and cope with them.
  • Join a support group. Talking about a problem with your partner, a good friend, or other people with similar problems is a valuable way to reduce tension and stress.
  • Get help if you need it. Discuss your concerns with your doctor, counsellor, or other health professional.

When should you call for help?

Call 911 anytime you think you may need emergency care. For example, call if:

  • You have symptoms of a heart attack. These may include:
    • Chest pain or pressure, or a strange feeling in the chest.
    • Sweating.
    • Shortness of breath.
    • Nausea or vomiting.
    • Pain, pressure, or a strange feeling in the back, neck, jaw, or upper belly or in one or both shoulders or arms.
    • Light-headedness or sudden weakness.
    • A fast or irregular heartbeat.
    After you call 911, the operator may tell you to chew 1 adult-strength or 2 to 4 low-dose aspirin. Wait for an ambulance. Do not try to drive yourself.

Call your doctor or nurse call line now or seek immediate medical care if:

  • You have problems related to scleroderma that worry you.
  • You feel depressed or no longer get pleasure from activities you used to enjoy.
  • You have swollen, red joints.
  • You have trouble breathing.

Watch closely for changes in your health, and be sure to contact your doctor or nurse call line if:

  • You do not get better as expected.

Where can you learn more?

Go to https://www.healthwise.net/patientEd

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Care instructions adapted under license by your healthcare professional. If you have questions about a medical condition or this instruction, always ask your healthcare professional. Healthwise, Incorporated disclaims any warranty or liability for your use of this information.