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YOUR JOURNEY WITH CUSHING'S SYNDROME IS AS INDIVIDUAL AS YOU ARE
Cushing's syndrome (CS) 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. CS 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 SYNDROME. WHAT HAPPENS NEXT?
Your healthcare provider may have diagnosed you with CS after finding either:
- Benign (noncancerous) tumor in your pituitary gland, also known as Cushing's disease; or
- Benign (noncancerous) or malignant (cancerous) tumor in your adrenal gland(s); or
- A tumor outside of your pituitary or adrenal gland(s) that's causing your body produce too much of the hormone, cortisol
Cortisol 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 syndrome.
Your healthcare provider may also have used the term ‘endogenous Cushing’s syndrome' to describe your condition. That means the body is producing too much cortisol due to a problem within the body itself, rather than from an external source like medication. When CS is caused by an external source, it's known as exogenous. Isturisa is not appropriate and not approved for patients with exogenous Cushing's syndrome.
Signs and symptoms of Cushing's Syndrome
CS is characterized by a variety of symptoms; however, patients often experience CS in vastly different ways. So while some patients are easily diagnosed, others can be misdiagnosed.
I'M HAVING SURGERY FOR CUSHING'S SYNDROME. NOW WHAT?
The goal of any treatment for CS is to bring your cortisol levels down to normal. The first-line of treatment is surgery to remove the tumor, if eligible, that's causing the CS. If surgery isn't successful the first time, your healthcare provider may recommend that you repeat surgery.
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 the affected gland to begin functioning normally after the procedure. 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, the symptoms of Cushing’s syndrome 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 SYNDROME.
WHAT SHOULD I EXPECT NOW?
The reality is that surgery does not work for everyone. And even if it does work for some time, the symptoms of CS can persist.
Second-line treatment includes repeat surgery, or medication or radiation therapy when surgery has failed to normalize your cortisol levels.
Medication therapy has been increasingly used for all types of endogenous CS in these circumstances. To lower the cortisol levels in your body, there are different medicines available that target different areas like the pituitary gland, the adrenal glands, or the cortisol receptors throughout the body.
Radiation therapy can be used as additional treatment for patients with endogenous CS who don't achieve remission when surgical intervention isn't feasible. Radiation may help control 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.
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 syndrome that works by blocking an enzyme that helps make cortisol.
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WHAT IS ISTURISA?
ISTURISA (osilodrostat) is a prescription medicine used to treat elevated levels of cortisol in the blood (endogenous hypercortisolemia) in adults with Cushing’s syndrome:
- who cannot have surgery, or
- who have had surgery which did not cure their Cushing’s syndrome
It is not known if ISTURISA is safe and effective in children.
ISTURISA is a prescription medicine used to treat elevated levels of cortisol in the blood (known as endogenous hypercortisolemia) in adults with Cushing’s syndrome. Appropriate patients either cannot have surgery, or have had surgery which did not cure their Cushing’s syndrome. 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 interval 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 or plan to become pregnant. It is not known if ISTURISA will harm your unborn baby. There are risks to the mother and unborn baby associated with active Cushing’s syndrome during pregnancy.
- 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 any 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, problems with body salt (electrolyte) levels in your blood, stomach (abdominal) pain, loss of appetite, dizziness, low blood sugar.
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), decreased appetite, pain in your joints (arthralgia), muscle pain or soreness (myalgia), weakness (asthenia), and diarrhea.
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 full Prescribing Information.
PP-IST-US-0576
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