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Caring for Someone with Wilson’s Disease

When a loved one is living with a rare disease, you want to do all you can to help and be supportive. It’s not easy and it’s common to feel overwhelmed and have questions. If a family member or close friend has been diagnosed with Wilson’s disease, the first step is to get informed. Understanding what Wilson’s disease is and how it impacts the body will help you become a more knowledgeable caregiver. Here you’ll find key information and resources to help you learn what to expect about the disease and build the strong support network your loved one needs.

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Caring for someone who was
recently diagnosed?

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What is Wilson’s Disease?

Wilson’s disease is a rare disease and only affects about 1 in 30,000 people around the world. Normally, copper is absorbed through food and the liver helps get rid of the excess, but in people with Wilson’s disease, the liver doesn’t eliminate extra copper as it should. This causes copper to build up in the liver, brain, and other organs, which can cause life-threatening damage over time.

 

Sharing Their Stories

Hear six people—with different experiences and perspectives—get real about the impact Wilson’s has had on their lives and the lives of their loved ones.

 
 

The Path To Diagnosis

Learn about how difficult it can be to receive the right diagnosis, and the different emotions that people often experience when they finally have an answer.

 
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WD Rx Access Program

Offering $5 monthly co-pays, medication home delivery and one-on-one nurse coaching for eligible commercially insured patients.

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Caring for someone who is living with Wilson’s?

Wilson’s disease is a life long disease that can be treated. Here’s what you need to know.

The Importance of Support

What does support look like to different people impacted by Wilson’s disease? Learn how others have found support when they needed someone to lean on.

 

Partners in Care

How to talk to your loved one about the level of support they want and need

Partners in Care Worksheet

As a caregiver, you want to provide as much support for your loved one as you can, while also fostering his or her independence. This can be a challenging balance, and a difficult subject to talk about. This step-by-step exercise is designed to start an open conversation between you and your loved one about what level of support is right for them.

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Mental Health

Wilson’s disease symptoms aren’t limited to physical challenges. Learn about some of the mental and emotional difficulties that your loved one may be experiencing, and understand the importance of a support network.

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Copper-Conscious Cookbook

Living with Wilson’s oftentimes means following a lower-copper diet. Find lower-copper recipes, tips for dining out and more to share with your loved one.

Get Cooking ›
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WD Rx Access Program

Offering $5 monthly co-payments, medication home delivery and one-on-one nurse coaching for eligible commercially insured patients.

Learn More ›
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Tips & Tricks: Advice from the Wilson’s Disease Community

Discover creative tips and tricks for overcoming daily challenges suggested by people living with Wilson’s disease.

Learn More ›
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Wilson’s Wisdom Letter Library

Read more from others who have experience caring for someone with Wilson’s Disease.

Read more ›
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For more information on WD Rx Access and
your medication, please select the product
you’ve been prescribed:

INDICATION

CUPRIMINE® (penicillamine) is used to treat Wilson's disease (a disease where there is too much copper in the body), cystinuria (a disease where an excess amount of certain proteins are in the urine) and patients with severe, active rheumatoid arthritis who have not had a response to other therapy. The available evidence suggests that CUPRIMINE is not effective for the treatment of ankylosing spondylitis.

IMPORTANT SAFETY INFORMATION

WARNING: You should be under the close supervision of your doctor when you are taking CUPRIMINE. Report any side effects promptly to your doctor.

  • Do not take CUPRIMINE if you have cystinuria or rheumatoid arthritis and are pregnant. If you are taking CUPRIMINE to treat Wilson’s disease, continuing your treatment during pregnancy protects you against relapse of Wilson’s disease. Stopping your penicillamine treatment during pregnancy could have negative effects which could be fatal. Mothers on therapy with penicillamine should not nurse their infants. Tell your healthcare provider if you are pregnant or plan to become pregnant.
  • CUPRIMINE can cause serious blood disorders, and some can be fatal. If you have had aplastic anemia (anemia due to lack of all blood cells) or agranulocytosis (lack of certain white blood cells) and it was related to taking CUPRIMINE, you should not take it again.
  • CUPRIMINE can cause kidney damage and should not be used to treat rheumatoid arthritis if you have a history of kidney disease. If you take CUPRIMINE to treat cystinuria or Wilson’s disease, routine analysis of your urine may be necessary, and you should have an x-ray every year to check for kidney stones.
  • CUPRIMINE can be associated with fatalities due to other diseases such as aplastic anemia, agranulocytosis, thrombocytopenia, Goodpasture’s syndrome (an immune disease that attacks the lungs and kidneys) and myasthenia gravis (an immune disease affecting the muscles).
  • Your doctor may order blood tests on a regular basis.
  • CUPRIMINE can affect how your liver works. Tests to determine how your liver is working should be done regularly.
  • Tell your doctor right away if you experience: blood in your urine, unexplained cough or wheezing, coughing up blood, shortness of breath, muscle weakness, drooping eyelids, double vision, watery blisters on the skin or other rash, fever, sore throat, chills, bruising, bleeding, joint pain, swollen lymph nodes, mouth ulcers, or diminished taste.
  • CUPRIMINE is a drug that has many side effects, and some can be fatal. Common side effects that can occur include nausea, vomiting, and diarrhea, serious lung problems, blood problems, nervous system symptoms such as eye or ear symptoms or muscle weakness, diseases of the skin and mucous membranes, allergic reactions (including a condition known as drug fever as well as skin rashes), mouth ulcers, and loss of taste. Talk to your doctor if you experience side effects and also about possible side effects that could occur. Ask your doctor or pharmacist for product labeling written for professionals for a full list of potential side effects.
  • Tell your doctor about all other medicines (prescription and over-the-counter, including vitamins and herbal supplements) that you are taking. Some medicines (such as gold therapy, antimalarial or cancer drugs, oxyphenbutazone or phenylbutazone) should not be used with CUPRIMINE because they also may cause serious liver, kidney, and blood side effects.

Please click here for full Prescribing Information for CUPRIMINE including Boxed Warning

You are encouraged to report negative side effects of prescription drugs to FDA. Visit www.FDA.gov/medwatch or call 1-800-FDA-1088.

INDICATIONS AND USAGE

SYPRINE® (trientine hydrochloride) is used to treat Wilson's disease in patients who cannot take the medication known as penicillamine. Wilson's disease is a condition where the body stores too much copper. Unlike penicillamine, SYPRINE is not recommended to treat cystinuria or rheumatoid arthritis because it is not effective in these conditions, or biliary cirrhosis.

IMPORTANT SAFETY INFORMATION

 

  • Do not take SYPRINE if you are allergic to it.
  • You should remain under regular medical supervision the entire time you are taking SYPRINE.
    • Your doctor should regularly check to see if you have iron deficiency anemia. This is particularly important for women. Your doctor should also check for free copper in your blood.
  • Take SYPRINE on an empty stomach, at least one hour before a meal or two hours after a meal and at least one hour apart from any other drug, food, or milk. The capsules should be swallowed whole with water and should not be opened or chewed.
  • For the first month of treatment, take your temperature every night, and report any symptom such as fever or skin rash to your doctor.
  • Do not take mineral supplements because they may block the absorption of SYPRINE.
  • Tell your doctor if you are pregnant, plan to become pregnant, or are nursing.
  • The following adverse reactions have been reported from a clinical study: iron deficiency and a condition affecting the immune system known as systemic lupus erythematosus. In addition, the following adverse reactions have been reported in marketed use: abnormal or uncontrolled muscle contractions, muscle spasm and an immune disease affecting muscles known as myasthenia gravis.

Please click here for full Prescribing Information for SYPRINE.

You are encouraged to report negative side effects of prescription drugs to FDA. Visit www.FDA.gov/medwatch or call 1-800-FDA-1088.