Acthar is a prescription medicine for people with symptomatic sarcoidosis.

Acthar is a prescription medicine for people with symptomatic sarcoidosis.

Sarcoidosis Management Tips

Along with your treatment, there are other ways you may help to manage your condition. Consider the following tips:

Schedule Regular Check-Ups With Your Healthcare Team

Even if you are feeling well, it’s important to keep all scheduled appointments with your doctor(s):

  • Your doctor may want to run blood tests. He or she may also have you take a breathing (pulmonary function) test to check your lungs
  • You may also find it helpful to bring questions and a list of symptoms to your appointment. Take 2 printed copies with you. Keep one copy to take notes on while your doctor has the other one to read

Stay Organized

Sarcoidosis can affect many organs in your body. Because of this, you may need to see more than one specialist. If this is the case, it can be helpful to keep all of your healthcare providers’ contact information handy:

  • Create an up-to-date contact list of all your doctors. Provide your caregiver or a loved one with an extra copy of this list for safekeeping
  • Also, keep an up-to-date list of all current medications you are taking. Keep it with you at all times. Likewise, be sure to provide a copy to your caregiver or a loved one in case of an emergency

Maintain a Healthy Lifestyle

  • Remember to always discuss any diet and exercise changes with your doctor first
  • Eat a well-balanced diet. Whether you have sarcoidosis or not, it’s important to make healthy choices. Studies have shown that the right diet may offer some potential health benefits. For example:
    • A diet that’s rich in fruits and vegetables, low-fat or non-fat dairy foods, and whole grains may possibly reduce your risk of some major health problems
  • Drink plenty of water daily (8-10 eight-ounce glasses per day)
  • Sarcoidosis can cause high levels of calcium in your blood. If this happens, you may need to make changes to your diet. Work with your healthcare provider on a diet plan that’s right for you
  • Exercise regularly, as directed by your doctor

Avoid Substances That Can Harm Your Lungs

  • Do not smoke. Ask your healthcare provider for treatments and programs that can help you quit
  • Try to avoid exposure to dust, chemicals, gases, toxic inhalants, and other substances that may harm your lungs

Get Plenty of Rest

Sometimes sarcoidosis can cause severe fatigue that results in loss of strength and energy.

  • Try to get at least 6-8 hours of sleep each night
  • Learn to pace yourself. Listen to your body when you are feeling weak, and take frequent rest periods or naps

Learn to Deal With Stress

Some research has shown that stress may have an impact on sarcoidosis. In fact, stress may actually play a role in triggering sarcoidosis in the first place. A stressful event may also cause the condition to become worse.

  • If you have sarcoidosis, it’s important to learn how to spot severe stress when it’s on the rise, and try to manage it. Some common warning signs of stress may include:
    • Headaches, neck or back pains, and muscle tension
    • Sleep problems, such as having trouble falling to sleep or staying asleep
    • Changes in your appetite. Either overeating or a loss of appetite
    • Difficulty staying focused or concentrating. Being forgetful and having memory problems
    • Having a short temper, feeling anxious or jittery, or being frequently irritable
  • Some tips to cope with stress include:
    • If you become stressed, try to take a break
    • Avoid drinking alcohol
    • When you feel overwhelmed, try talking to someone (a loved one, a friend, or, if needed, a professional)

Talk to your doctor if stress is becoming a severe, ongoing problem.

Find a Support Group in Your Area

Sometimes it can help to connect with others who share your condition:

  • Try attending a local sarcoidosis support group. Ask your doctor for a referral
  • If you cannot find a sarcoidosis support group near you, try searching for autoimmune disease support groups
  • Get information about finding a sarcoidosis support group near you or starting your own support group here

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Support for You Throughout Your Treatment

ActharPACT (Patient & Acthar Coaching Team) provides nurses who offer guidance, support, and helpful tips to you throughout your treatment with Acthar. It also offers access to a 24-hour hotline—all at no cost. Learn more >

Important Safety Information

DO NOT take Acthar until you have talked to your doctor if you have any of the following conditions:


Important Safety Information


DO NOT take Acthar until you have talked to your doctor if you have any of the following conditions:

  • A skin condition called scleroderma
  • Bone density loss or osteoporosis
  • Any infections, including fungal, bacterial, or viral
  • Eye infections, such as ocular herpes simplex
  • Had recent surgery
  • Stomach ulcers or a history of stomach ulcers
  • Heart failure
  • Uncontrolled high blood pressure
  • Allergies to pig-derived proteins
  • Have been given or are about to receive a live or live attenuated vaccine
  • Suspected congenital infections (in children under 2 years of age)
  • If you have been told that you have Cushing’s syndrome or Addison’s disease

Tell your doctor about any other health problems that you have. Give your doctor a complete list of medicines you are taking. Include all nonprescription medicines, vitamins, and herbal supplements that you are taking.

What is the most important information I should know about Acthar?

  • Never inject Acthar directly into a vein
  • Always inject Acthar beneath the skin or into the muscle
  • Follow your doctor’s instructions for injecting Acthar
  • Never stop treatment suddenly unless your doctor tells you to do so
  • Try not to miss any scheduled doctor’s appointments. It is important for the doctor to monitor you while taking Acthar

Acthar and corticosteroids have similar side effects.

  • You may be more likely to get new infections. Also, old infections may become active. Tell your doctor if you see any signs of an infection. Contact your doctor at the first sign of an infection or fever. Signs of infection are fever, cough, vomiting, or diarrhea. Other signs may be flu or any open cuts or sores
  • When taking Acthar long term, your adrenal gland may produce too much of a hormone called cortisol. This can result in symptoms of Cushing’s syndrome. This may cause increased upper body fat, a rounded “moon” face, bruising easily, or muscle weakness
  • Sometimes when you stop taking Acthar long term, your body may not produce enough natural cortisol. This is called “adrenal insufficiency.” Your doctor may prescribe a steroid medicine to protect you until the adrenal gland recovers
  • You might develop high blood pressure, or retain too much fluid. As a result of this, your doctor may recommend some changes to your diet, such as eating less salt and taking certain supplements
  • Vaccines may not work well when you are on Acthar. Talk to your doctor about which vaccines are safe to use when you are taking Acthar
  • Acthar may hide symptoms of other diseases. This can make it more difficult for your doctor to make a diagnosis if something else is going on
  • Stomach or intestinal problems. Acthar may increase the risk of bleeding stomach ulcers. Tell your doctor if you have stomach pains, bloody vomit, bloody or black stools, excessive tiredness, increased thirst, difficulty breathing, or increased heart rate
  • Taking Acthar can make you feel irritable or depressed. You may also have mood swings or trouble sleeping
  • If you have other conditions, such as diabetes or muscle weakness, you may find they get worse
  • You might develop certain eye conditions, such as cataracts, glaucoma, or optic nerve damage
  • Your body may develop allergies to Acthar. Signs of allergic reaction are:
    • Skin rash and itching
    • Swelling of the face, tongue, lips, or throat
    • Trouble breathing
  • Long-term Acthar use can affect growth and physical development in children. This can be reversed when Acthar is no longer needed
  • Acthar may cause osteoporosis (weak bones)
  • Acthar might harm an unborn baby. Therefore, tell your doctor if you are pregnant or plan on becoming pregnant

What are the most common side effects of Acthar?

The most common side effects of Acthar are similar to those of steroids. They include:

  • Fluid retention
  • High blood sugar
  • High blood pressure
  • Behavior and mood changes
  • Changes in appetite and weight

These are not all of the possible side effects of Acthar.

Tell your doctor about any side effect that bothers you, or that does not go away. Call your doctor or pharmacist for medical advice about side effects. You may report side effects to the FDA. Call 1-800-FDA-1088 or visit You may also report side effects by calling 1-800-778-7898.

Please see full Prescribing Information.