Certain von Hippel-Lindau (VHL) disease-related tumors Treatment resources

Talking to your doctor

Whether you’ve been recently diagnosed with VHL disease or are starting a new treatment plan, the following information is available to make it easier for you to ask your doctor the right questions and track your treatment.

Questions to ask your care team

It’s normal to have questions about your condition and medicine at the start of your treatment plan. As you get started, the Doctor Discussion Guide can help you start the conversation at your next appointment.

Make WELIREG part of your routine

One of the best ways to remember to take WELIREG at the same time each day is by creating a routine. This can make it easier to establish a new habit—like taking a new medication. Use the following tips to help you create a routine that reminds you to take WELIREG at the right time every day.

Here are some ideas to help you create a routine that works for you:

  • Get smart with reminders. Set a daily alarm on your cell phone or other smart device to help you remember to take your medication on time every day.
  • Bundle your habits. Think about the morning habits you already have, like brushing your teeth or taking a shower, and pair that with taking WELIREG. Over time, the two habits will become connected.
  • Use your support network. If you have family or friends who have offered to help you, set up a phone chain where one person calls or texts you each day. Not only will you remember to take your medication, but you’ll also stay connected to the people you love.

Have a question?

For assistance, please call 833-WELIREG (833-935-4734)

Managing treatment with WELIREG

While everyone’s experience taking WELIREG may differ, here are a few more tips that may be helpful to you. Your health care team can offer additional resources and support.

Speak up if you feel something

Tell your doctor if you have any side effect that bothers you or that does not go away.

Eat healthy foods

Make a plan with your doctor to eat the right foods during treatment.

Try to stay active

Speak with your health care team to make a plan to reach your goals and do the things you enjoy.

Ask for help

If you’re feeling tired, ask for help from your friends and family–and make sure to talk to your health care team.

What is WELIREG?

WELIREG is a prescription medicine used to treat adults with von Hippel-Lindau (VHL) disease who need treatment for a type of kidney cancer called renal cell carcinoma (RCC), tumors in the brain and spinal cord called central nervous system (CNS) hemangioblastomas, or a type of pancreatic cancer called pancreatic neuroendocrine tumors (pNET), that do not need surgery right away.

It is not known if WELIREG is safe and effective in children.

Important Safety Information

WELIREG may cause serious side effects. WELIREG may cause harm to your unborn baby.

  • A pregnancy test will be done before you start treatment.
  • Birth control methods that contain hormones may not work as well during treatment.
  • Females and males with female partners who can become pregnant should use an effective form of non-hormonal birth control (contraception) during treatment and for 1 week after your last dose.

WELIREG may cause serious side effects, including:

Low red blood cell counts (anemia). Low red blood cell counts are common with WELIREG and can be severe. You may need a blood transfusion if your red blood cell counts drop too low. Your health care provider will do blood tests to check your red blood cell counts before you start and during treatment with WELIREG. Tell your health care provider if you get any symptoms of low red blood cell counts, including tiredness, feeling cold, shortness of breath, chest pain, or fast heartbeat.

Low oxygen levels in your body. WELIREG can cause low oxygen levels in your body that can be severe and may require you to stop treatment with WELIREG, receive oxygen therapy, or be hospitalized. Your health care provider will monitor your oxygen levels before you start and during treatment with WELIREG. Tell your health care provider or get medical help right away if you get symptoms of low oxygen in your body, including shortness of breath or increased heart rate.

Harm to your unborn baby. Treatment with WELIREG during pregnancy can cause harm to your unborn baby.

Females who are able to become pregnant:

  • Your health care provider will do a pregnancy test before you start treatment with WELIREG.
  • You should use an effective form of non-hormonal birth control (contraception) during treatment with WELIREG and for 1 week after your last dose.
  • Birth control methods that contain hormones (such as birth control pills, injections, or transdermal system patches) may not work as well during treatment with WELIREG.
  • Talk to your health care provider about birth control methods that may be right for you during treatment with WELIREG.
  • Tell your health care provider right away if you become pregnant or think you may be pregnant during treatment with WELIREG.

Males with female partners who are able to become pregnant:

  • You should use effective birth control (contraception) during treatment with WELIREG and for 1 week after your last dose.
  • Tell your health care provider right away if your partner becomes pregnant or thinks she is pregnant while you are taking WELIREG.

Before taking WELIREG, tell your health care provider about all of your medical conditions, including if you:

  • have low red blood cell counts (anemia)
  • are pregnant or plan to become pregnant
  • are breastfeeding or plan to breastfeed. It is not known if WELIREG passes into your breast milk. Do not breastfeed during treatment with WELIREG and for 1 week after your last dose.

Tell your health care provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. WELIREG and certain other medicines can affect each other and cause serious side effects.

The most common side effects of WELIREG in adults with VHL disease include:

  • tiredness
  • increased creatinine (kidney function test)
  • headache
  • dizziness
  • increased blood sugar (glucose) levels
  • nausea

The most common side effects of WELIREG in adults with advanced RCC include:

  • tiredness
  • decreased white blood cells
  • increased creatinine (kidney function test)
  • muscle and joint pain
  • increased liver function tests
  • decreased blood salts (sodium) levels
  • increased blood potassium levels

WELIREG may cause fertility problems in males and females, which may affect your ability to have children. Talk to your health care provider if this is a concern for you.

These are not all of the possible side effects of WELIREG. Call your health care provider for medical advice about side effects.

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

Please read the accompanying Medication Guide for WELIREG, including an important warning about harm to an unborn baby, and discuss it with your doctor. The physician Prescribing Information also is available.