Nephrogenic Systemic Fibrosis

WHAT YOU SHOULD KNOW:

• Nephrogenic systemic fibrosis is also called NSF. It is a condition normally found in people with kidney disease. With NSF your skin becomes thick and hard, mostly on your arms and legs. Your muscles, joints, organs, and the tissue that covers your brain may also be involved. NSF may progress quickly causing very bad pain, and may be life threatening. It is not clear exactly what causes NSF. It may be caused by a gadolinium dye used during a magnetic resonance imaging (MRI) test. Surgery and certain medicines and conditions may increase your risk for having NSF.
  
  
• With NSF, you may have itchy or painful skin-colored or reddish bumps on your skin. Your hands and feet may swell and you may have pain and weakness in your arms and legs. You may have chest pain or see yellow spots on your eyes. Blood tests and a deep skin biopsy may be needed to learn more about your condition. A computed tomography (CT) scan, magnetic resonance imaging (MRI), and an echocardiogram may also be used. Treatment may include medicines, dialysis, kidney transplant, photopheresis, and physical therapy. Having NSF found and treated early may decrease your symptoms and prevent further damage to your body.

INSTRUCTIONS:

Take your medicine as directed.

Call your primary healthcare provider if you think your medicine is not helping or if you have side effects. Tell him if you are allergic to any medicine. Keep a list of the medicines, vitamins, and herbs you take. Include the amounts, and when and why you take them. Bring the list or the pill bottles to follow-up visits. Carry your medicine list with you in case of an emergency.

Ask for information about where and when to go for follow-up visits:

For continuing care, treatments, or home services, ask for more information.

Pain clinic:

Caregivers at a pain clinic may help you learn new ways to control your pain. You may learn relaxation or special breathing exercises to help decrease your pain. Caregivers at the clinic will help you find ways to decrease your pain that may work for you.

Physical therapy:

You may need to see a physical therapist to teach you special exercises. These exercises help improve movement and decrease pain. Physical therapy can also help improve strength and decrease your risk for loss of function.

CONTACT A CAREGIVER IF:

• Your arms or legs are swollen, or you have trouble moving them.
  
  
• Your skin becomes red or painful.
  
  
• You have questions or concerns about your condition, treatment, or care.

SEEK CARE IMMEDIATELY IF:

• You suddenly have trouble breathing.
  
  
• You have worsening pain that does not get better after taking medicine.

Learn more about Nephrogenic Systemic Fibrosis (Aftercare Instructions)