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Scleroderma: Care Instructions

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Overview

Scleroderma is an autoimmune disease that affects the skin and blood vessels. It can also affect organs such as the kidneys, heart, esophagus, and lungs.

Scleroderma causes the skin to harden and get tight. Your joints may get stiff and swollen. If this disease affects the organs, it is called systemic sclerosis and 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. Systemic sclerosis increases the risk of heart, kidney, and lung failure, which can lead to death. 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, physical therapist, psychologist, dentist, and pharmacist. You will probably need medicines to treat symptoms and to prevent long-term problems.

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 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 if you have any problems with your medicine.
  • 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.
  • Stay up to date on your COVID-19 vaccines. Get flu and pneumococcal vaccines. These vaccines can prevent lung infections.
  • 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 doctor if you have sexual problems such as erectile dysfunction or pain with intercourse.
  • 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, counselor, 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.
    • Lightheadedness 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 now or seek immediate medical care if:

  • You have new or worse trouble breathing.
  • Your blood pressure is higher than normal.
  • You have new or worse swelling in your legs.
  • You have new or worse fatigue.
  • You have new or worse trouble swallowing or problems with reflux.
  • You have swollen, red joints or non-healing wounds.
  • You feel depressed or no longer get pleasure from activities you used to enjoy.

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

  • You have new or worse symptoms that worry you.

Where can you learn more?

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

Enter U068 in the search box to learn more about "Scleroderma: Care Instructions".

Current as of: November 16, 2023

Author: Ignite Healthwise, LLC Staff

Clinical Review Board
All Healthwise education is reviewed by a team that includes physicians, nurses, advanced practitioners, registered dieticians, and other healthcare professionals.

Current as of: November 16, 2023

Author: Ignite Healthwise, LLC Staff

Clinical Review Board
All Healthwise education is reviewed by a team that includes physicians, nurses, advanced practitioners, registered dieticians, and other healthcare professionals.

The Health Encyclopedia contains general health information. Not all treatments or services described are covered benefits for Kaiser Permanente members or offered as services by Kaiser Permanente. For a list of covered benefits, please refer to your Evidence of Coverage or Summary Plan Description. For recommended treatments, please consult with your health care provider.