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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 doctor, you can find answers to your questions right here.
I’ve been diagnosed with Cushing’s disease.
What happens next?
Your doctor has likely 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 control your mood, motivation, and the way you feel when you’re scared of something. 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 back to normal levels.
The common symptoms of Cushing’s disease
By now, you know the symptoms you have been feeling are 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.
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 back to normal. Surgery to remove the tumor on your pituitary gland is often the first choice of treatment. If surgery isn't successful, then a combination of surgery and multiple medicines may be used.
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 the surgery works well, you may not feel better right away. That’s because it takes time for cortisol levels to return to normal. Your doctor may recommend cortisol replacement therapy until this happens.
Unfortunately, surgery doesn’t always work for everyone. And, even years after surgery, Cushing’s disease can come back. That can be very disappointing. But there are other things you can do—including taking ISTURISA, a medicine specifically made to treat Cushing’s disease—that can help you take control of your disease.
I already had surgery for Cushing’s disease.
What should I expect now?
Having surgery offers hope of a more normal life. 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. That can be very disappointing and affect your mood and quality of life.
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, the adrenal glands, or the cortisol receptors throughout the body. Medicine may be one option that may be needed in your treatment journey.
In addition to medicines and a potential second surgery, other treatment options that you may have tried or that your doctor 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 doctor 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 Cushing’s disease, if you are unsure of anything or want to learn more about treatment options, like ISTURISA, which was made specifically to treat Cushing’s disease, be sure to talk with your healthcare provider. There are ways for you to treat your Cushing’s disease.
ISTURISA is a medicine that is specifically made to treat Cushing’s disease by lowering cortisol levels
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Learn about ISTURISA for the treatment of Cushing’s disease
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ISTURISA® (osilodrostat) Important Safety Information
Indications and Usage
ISTURISA (osilodrostat) 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.Important Safety Information:
- Hypocortisolism: Treatment with ISTURISA may cause symptoms associated with low levels of cortisol 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.
ISTURISA® (osilodrostat) Important Safety Information
Indications and Usage
ISTURISA (osilodrostat) 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.
Important Safety Information:
- Hypocortisolism: Treatment with ISTURISA may cause symptoms associated with low levels of cortisol 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 Heart Rhythm Problem: ISTURISA may cause 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 such as 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.
- Most common side effects include very low cortisol levels (adrenal insufficiency), tiredness (fatigue), nausea, headache, swelling of the legs, ankles or other signs of fluid retention (edema). These are not all of the possible side effects of ISTURISA.
To report SUSPECTED SIDE EFFECTS, contact Recordati Rare Diseases Inc. at 1-888-575-8344, or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.
Before taking ISTURISA, tell your doctor about all of 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 prescription medicines, over-the-counter medicines, vitamins, and 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.
Please see the Full Prescribing Information, including the Medication Guide, for ISTURISA and talk with your healthcare provider.