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WHAT TO KNOW
ALONG YOUR
JOURNEY

Model shown is not an actual patient.

Your journey with Cushing’s disease is as individual as you are

Cushing’s disease is a rare disease that can pose many challenges—from getting diagnosed, to handling the physical and emotional toll it can take, to finding the right treatment. But this is a journey you don’t have to take alone.

No matter where you are in your journey, you likely have questions. Cushing’s disease is not a straight pathway. There are likely twists and turns along the way. In addition to reaching out to your healthcare provider, you can find answers to some commonly asked questions right here.

I’ve been diagnosed with Cushing’s disease.
What happens next?

Your healthcare provider may have diagnosed you with Cushing’s disease after finding a benign (noncancerous) tumor on your pituitary gland (found at the base of your brain). As you may know, one of the jobs of the pituitary gland is to tell other glands what to do, and that includes telling the adrenal glands to make cortisol. Cortisol is a hormone that helps regulate your body’s response to stress. That’s why it’s often referred to as the “stress hormone.”

While we all need cortisol to live, this tumor causes the adrenal glands to make too much cortisol, which leads to the symptoms of Cushing’s disease. The goal of any treatment for Cushing’s disease is to get your cortisol levels down to normal levels.

The common symptoms of Cushing’s disease

By now, you know the symptoms you have been feeling may be a result of Cushing’s disease. While your symptoms may be different from someone else’s, there are some symptoms that typically occur. You may have experienced some or all of these common symptoms at one time or another. If your Cushing’s disease has gone away and come back, you may even have different symptoms now than in the past.

Model of human body showing symtom areas

I’m having surgery for Cushing’s disease.
Now what?

The goal of any treatment for Cushing’s disease is to bring your cortisol levels down to normal. Surgery to remove the tumor on your pituitary gland is often the first choice of treatment. If surgery isn't successful, then other treatment options, such as medicines, may be used. Or, your healthcare provider may recommend that you repeat surgery.

The surgery for Cushing’s disease is called transsphenoidal surgery, or TSS. It’s a very specialized surgery, so it’s important to find a neurosurgeon who has done many of these before.

It’s important to know that even if surgery works well, you may not feel better right away. That’s because it can take time for your pituitary gland to begin functioning normally. During this time, your cortisol levels may become too low. Your healthcare provider will monitor you and may recommend cortisol replacement therapy if this happens.

Unfortunately, surgery doesn’t always work for everyone. And, even years after surgery, Cushing’s disease can come back.

This is called “recurrence.” Recurrence rates vary. Studies show that about half of recurrences happen within 5 years after surgery, and half happen after up to 10 years or more.

ISTURISA® (osilodrostat) is a medicine that works by stopping an enzyme in your body that makes cortisol.

I already had surgery for Cushing’s disease.
What should I expect now?

The reality is that surgery does not work for everyone. And even if it does work for some time, Cushing’s disease can come back.

But there are other things that you can do to take control of your Cushing’s disease, by lowering cortisol levels in your body. Medicines are available that target different areas: the tumor on the pituitary gland (like ISTURISA), the adrenal glands, or the cortisol receptors throughout the body. Medicine is an option that may be used in your treatment journey.

In addition to medicines and a potential second surgery, other treatment options that you may have tried or that your healthcare provider may recommend include

Radiation therapy—Radiation to the pituitary tumor may help control the tumor growth and lower cortisol levels. You should know that it can take years for radiation to work. During this time, your healthcare provider may suggest medicines to help bring down your cortisol levels.

Removal of the adrenal glands—Surgery can be done to remove the adrenal glands. But this is only recommended if other treatments don’t work or if you are very sick. That’s because once your adrenal glands are removed, your body doesn’t make any cortisol at all. You will need to take multiple medicines to replace this.

Wherever you are in your journey with disease, be sure to talk with your healthcare provider. Let them know if you want to learn more about medical treatment options including ISTURISA.

ISTURISA is the first FDA-approved medicine for Cushing’s disease that works by blocking an enzyme that helps make cortisol. Learn more
Learn about ISTURISA for the treatment of Cushing’s disease Find out what ISTURISA can do for you Ready to start a new chapter in your treatment? Learn what to expect when taking ISTURISA Our knowledgeable professionals are dedicated to supporting your treatment goals Connect with the R.A.R.E.® support team

INDICATION(S) AND IMPORTANT SAFETY INFORMATION

WHAT is ISTURISA?

ISTURISA (osilodrostat) is a prescription medicine that is used to treat adults with Cushing’s disease:

  • who cannot have pituitary surgery, or
  • who have had pituitary surgery, but the surgery did not cure their Cushing’s disease

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

INDICATION(S) AND IMPORTANT SAFETY INFORMATION

WHAT is ISTURISA?

ISTURISA (osilodrostat) is a prescription medicine that is used to treat adults with Cushing’s disease:

  • who cannot have pituitary surgery, or
  • who have had pituitary surgery, but the surgery did not cure their Cushing’s disease

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

IMPORTANT SAFETY INFORMATION

Before starting ISTURISA tell your healthcare provider about all your medical conditions, including if you:

  • have or had heart problems, such as an irregular heartbeat, including a condition called prolonged QT syndrome (QT internal prolongation). Your healthcare provider will check the electrical signal of your heart (called an electrocardiogram) before you start taking ISTURISA, 1 week after starting ISTURISA, and as needed after that.
  • have a history of low levels of potassium or magnesium in your blood.
  • have liver problems.
  • are breastfeeding or plan to breastfeed. It is not known if ISTURISA passes into your breast milk. You should not breastfeed if you take ISTURISA and for 1 week after stopping treatment.

Tell your healthcare provider about all the medicines you take, including any prescription and over-the-counter medicines, vitamins, or herbal supplements.

Especially tell your healthcare provider if you take medicines used to treat certain heart problems. Ask your healthcare provider if you are not sure whether your medicine is used to treat heart problems.

ISTURISA can cause serious side effects including:

  • Low cortisol levels in your blood (hypocortisolism). Tell your healthcare provider right away if you experience more than one of the following symptoms, as these may be symptoms of very low cortisol level, known as adrenal insufficiency: nausea, vomiting, tiredness (fatigue), low blood pressure, stomach (abdominal) pain, loss of appetite, dizziness.

    If you get symptoms of hypocortisolism while taking ISTURISA, your healthcare provider may change your dose or ask you to stop taking it.

  • Heart problem or a heart rhythm problem, such as an irregular heartbeat which could be a sign of a heart problem called QT prolongation. Call your healthcare provider right away if you have irregular heartbeats.

  • Increase in other adrenal hormone levels. Your other adrenal hormones may increase when you take ISTURISA. Your healthcare provider may monitor you for the symptoms associated with these hormonal changes while you are taking ISTURISA:

    • Low potassium (hypokalemia).
    • High blood pressure (hypertension).
    • Swelling (edema) in the legs, ankles or other signs of fluid retention.
    • Excessive facial or body hair growth (hirsutism).
    • Acne (in women).

Call your healthcare provider if you have any of these side effects.

The most common side effects of ISTURISA include very low cortisol levels (adrenal insufficiency), tiredness (fatigue), nausea, headache, and swelling of the legs, ankles or other signs of fluid retention (edema).

These are not all the possible side effects of ISTURISA. Call your healthcare provider for medical advice about side effects. You are encouraged to report side effects of prescription drugs to the FDA. Call 1-800-FDA-1088 or visit www.fda.gov/medwatch.

ISTURISA® (osilodrostat) tablets, for oral use, is available as 1 mg and 5 mg tablets.

Please see the full Prescribing Information.