`` Symptomatic Sarcoidosis | Acthar® Gel (repository corticotropin injection)

Relief for symptomatic sarcoidosis

Acthar Gel is FDA approved to treat symptomatic sarcoidosis.

Brandi, treated with Acthar Gel.
Individual results may vary. Compensated by Keenova.

Links On this page What is Acthar Gel

What is Acthar Gel?

Acthar Gel is a prescription medicine used to treat symptomatic sarcoidosis.

Ask about Acthar Gel

Make the most of your next doctor's appointment. Download this brochure and bring it to your next visit.

Look inside to find information about:
  • What Acthar Gel is and how it is believed to work
  • How to take it
  • Patient support programs
  • Tips for talking with your doctor
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Are you struggling with symptomatic sarcoidosis?

Many symptoms are internal and invisible to others, which can make it hard for people to recognize how much someone with symptomatic sarcoidosis is struggling.

If you’ve been living with symptomatic sarcoidosis for more than 2 to 5 years, you may have advanced sarcoidosis. The symptoms you have depends on which part of your body is affected. Common symptoms include:

Shortness of breath Shortness of breath
Wheezing or coughing Wheezing, coughing, or chest pain
Fever Fever
Joint pain, stiffness, or swelling Joint pain, stiffness, or swelling
Abnormal heartbeat Abnormal heartbeat
Fatigue Fatigue

Someone with symptomatic sarcoidosis may appear fine on the outside but still be struggling. If you’re experiencing these symptoms, ask your doctor about Acthar Gel. It may be able to help ease your symptomatic sarcoidosis.

What is symptomatic sarcoidosis?

Symptomatic sarcoidosis is a condition where the body’s immune system causes swelling and inflammation in different parts of the body. In sarcoidosis, small clumps of cells called "granulomas" form in the affected areas. These granulomas are made up of immune cells that group together, with no clear cause. This happens most often in the lungs and lymph nodes.

Warning

Symptomatic sarcoidosis may go away on its own without treatment, or symptoms may stay the same without getting worse. In some cases, sarcoidosis can spread to other organs and become more serious.

Real patient stories

You're not alone. Hear from real people about their experiences and the impact Acthar Gel has had for them.

Meet Kerry

Kerry shares her experience being diagnosed with symptomatic sarcoidosis. After being treated with Acthar Gel, she was able to manage her symptoms.

Additional patient stories
Meet Leisly

Meet Leisly

quote icon

I want to know and learn as much as possible about sarcoidosis. I want to be my own best advocate.”

When I was diagnosed with sarcoidosis, I had to give up my career working as a flight attendant. I had to adjust to a new life.

It all started in 2019, after a 10-hour flight from Brazil. I suddenly had trouble breathing. I grew increasingly sicker, and when I visited a pulmonologist, I was diagnosed with symptomatic sarcoidosis.

My pulmonologist had me try multiple treatments without much improvement until they asked if I’d be interested in trying Acthar® Gel (repository corticotropin injection). I was able to get financial assistance through Acthar Patient Support. I also have a dedicated Nurse Navigator* who I can call with any questions about injection training. I’m very grateful for this program; the support is amazing. It makes me feel like a human being—not a number or a dollar amount. Now, I’m learning to accept my sarcoidosis and help other patients, too.

Everyone’s experiences are different. For example, I did not experience any side effects with Acthar Gel, but I later learned that some people have experienced increased blood pressure from taking it. It’s important to talk to your healthcare provider if you have any questions or concerns about your treatment. Individual results may vary.

*Nurse Navigators do not provide medical advice, and patients should discuss any medical questions with their HCP.

 Meet Leisly

Learn about Leisly's experience treating symptomatic sarcoidosis with Acthar Gel.

2-minute read

Meet Matt story

Meet Matt

quote icon

This treatment has helped my condition, and I hope you find the right treatment for you to do the same.”

I was the life of the party who never said no to a good time. I only had to worry about when to pick up my kids from school and what my wife wanted to eat for dinner. Sounds like every run-of-the-mill story ever, right? My life changed after what I thought were kidney stones turned out to be something more serious. I was diagnosed with symptomatic sarcoidosis, and I knew it was important for me to find a treatment that would work for me.

My doctor suggested Acthar® Gel (repository corticotropin injection) and explained that it was an injection administered under the skin or into the muscle to help with my symptoms such as breathing difficulty. I did experience some side effects while taking Acthar Gel in the beginning, like shortness of breath and fatigue with any kind of activity, but this is just my experience.

I was able to get financial assistance for Acthar Gel through the Patient Support Program, and they offered tips and good information when I first started treatment. I have a dedicated Nurse Navigator* who calls me every other month to check in, and she is always available if I have any questions about injection training. She spoke with my wife and explained to her how to administer my Acthar Gel injections so we can treat at home. Now, I’m sharing my story to encourage others to find treatment options that work for them.

Everyone’s experiences are different. It’s important to talk to your healthcare provider if you have any questions or concerns about your treatment. Individual results may vary.

*Nurse Navigators do not provide medical advice, and patients should discuss any medical questions with their HCP.

 Meet Matt

Learn about Matt's experience treating symptomatic sarcoidosis with Acthar Gel.

2-minute read

NEXT:
Discover how Acthar Patient Support can help you start treatment if you and your doctor decide on Acthar Gel
What is Acthar Gel?
Toggle ISI tray

Acthar Gel is a prescription medicine used for:

  • Treatment for flares or on a regular basis (maintenance) in people with dermatomyositis or polymyositis (DM-PM)
  • Treatment for flares or on a regular basis (maintenance) in people with systemic lupus erythematosus (lupus)
  • Add-on therapy for short-term administration (to tide patients over an acute episode or exacerbation) in: psoriatic arthritis (PsA); rheumatoid arthritis (RA), including juvenile rheumatoid arthritis (selected cases may require low-dose maintenance therapy); ankylosing spondylitis
  • Treatment for people with symptomatic sarcoidosis
  • Treatment of severe acute and chronic allergic and inflammatory conditions affecting different parts of the eye. This can include the front part of the eye such as the cornea and iris, or the back part of the eye such as the optic nerve and retina
  • Reduction of proteinuria in people with nephrotic syndrome of the idiopathic type (unknown origin) without uremia (accumulation of urea in the blood due to malfunctioning kidneys) or that due to lupus erythematosus (lupus)
  • Treatment for adults with acute relapses or flares of multiple sclerosis (MS). Studies have shown Acthar to be effective in speeding recovery from an MS relapse. However, there is no evidence that it affects the ultimate outcome or natural history of the disease
  • Treatment of infantile spasms in infants and children under 2 years of age

Acthar is injected beneath the skin or into the muscle.

IMPORTANT SAFETY INFORMATION
Toggle ISI tray

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

  • Have been given or are about to receive a live or live attenuated vaccine
  • 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
  • Addison's disease or Cushing's syndrome
  • Allergies to pig-derived proteins
  • Suspected infections at birth (in infants under 2 years of age)

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

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

  • Never inject Acthar directly into a vein
  • Acthar is injected beneath the skin or into the muscle. Always inject Acthar with SelfJect beneath the skin
  • 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
  • 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, retain too much salt and water, or have low blood potassium levels. As a result of this, your doctor may recommend some changes to your diet, such as eating less salt or taking certain supplements
  • Vaccines may not work well when you are on Acthar. Talk to your doctor about which vaccines are safe to use while you are taking Acthar
  • Acthar may hide symptoms of other diseases. This can make it more difficult for your doctor to make a diagnosis of something else is going on
  • Stomach or intestinal problems. Acthar may increase the risk of bleeding and 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. These effects are reversible once Acthar therapy is stopped
  • 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; these allergies may be severe. Signs of allergic reaction include:
    • Skin rash and itching
    • Swelling of the face, tongue, lips, or throat
    • Trouble breathing
  • The effects of Acthar may be intensified if you have an underactive thyroid or cirrhosis of the liver
  • 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 to become pregnant

What are the most common side effects of Acthar?

Commonly reported side effects of Acthar include:

  • Injection site reaction
  • Fatigue, physical weakness, and lack of energy
  • Fluid retention
  • Insomnia (difficulty sleeping)
  • Headache
  • High blood sugar

The most common side effects for the treatment of infantile spasms (IS) are:

  • Increased risk of infections
  • Convulsions
  • High blood pressure
  • Irritability
  • Fever

The above side effects may also be seen in adults and children over 2 years of age. Some children with IS progress to other forms of seizures. IS sometimes makes these seizures, which may become visible after treatment for IS has been completed.

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 www.fda.gov/medwatch . You may also report side effects by calling 1-800-844-2830.

Please see the full Prescribing Information. If you've been prescribed SelfJect, please see the 40-unit or 80-unit Instructions for Use and the 40-unit or 80-unit Quick Reference Guide.

For parents and caregivers of children with infantile spasms, please also see Medication Guide.

Toggle ISI tray

What is Acthar Gel?

Acthar Gel is a prescription medicine used for:

  • Treatment for flares or on a regular basis (maintenance) in people with dermatomyositis or polymyositis (DM-PM)
  • Treatment for flares or on a regular basis (maintenance) in people with systemic lupus erythematosus (lupus)
  • Add-on therapy for short-term administration (to tide patients over an acute episode or exacerbation) in: psoriatic arthritis (PsA); rheumatoid arthritis (RA), including juvenile rheumatoid arthritis (selected cases may require low-dose maintenance therapy); ankylosing spondylitis
  • Treatment for people with symptomatic sarcoidosis
  • Treatment of severe acute and chronic allergic and inflammatory conditions affecting different parts of the eye. This can include the front part of the eye such as the cornea and iris, or the back part of the eye such as the optic nerve and retina
  • Reduction of proteinuria in people with nephrotic syndrome of the idiopathic type (unknown origin) without uremia (accumulation of urea in the blood due to malfunctioning kidneys) or that due to lupus erythematosus (lupus)
  • Treatment for adults with acute relapses or flares of multiple sclerosis (MS). Studies have shown Acthar to be effective in speeding recovery from an MS relapse. However, there is no evidence that it affects the ultimate outcome or natural history of the disease
  • Treatment of infantile spasms in infants and children under 2 years of age

Acthar is injected beneath the skin or into the muscle.

IMPORTANT SAFETY INFORMATION

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

  • Have been given or are about to receive a live or live attenuated vaccine
  • 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
  • Addison's disease or Cushing's syndrome
  • Allergies to pig-derived proteins
  • Suspected infections at birth (in infants under 2 years of age)

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

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

  • Never inject Acthar directly into a vein
  • Acthar is injected beneath the skin or into the muscle. Always inject Acthar with SelfJect beneath the skin
  • 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
  • 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, retain too much salt and water, or have low blood potassium levels. As a result of this, your doctor may recommend some changes to your diet, such as eating less salt or taking certain supplements
  • Vaccines may not work well when you are on Acthar. Talk to your doctor about which vaccines are safe to use while you are taking Acthar
  • Acthar may hide symptoms of other diseases. This can make it more difficult for your doctor to make a diagnosis of something else is going on
  • Stomach or intestinal problems. Acthar may increase the risk of bleeding and 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. These effects are reversible once Acthar therapy is stopped
  • 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; these allergies may be severe. Signs of allergic reaction include:
    • Skin rash and itching
    • Swelling of the face, tongue, lips, or throat
    • Trouble breathing
  • The effects of Acthar may be intensified if you have an underactive thyroid or cirrhosis of the liver
  • 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 to become pregnant

What are the most common side effects of Acthar?

Commonly reported side effects of Acthar include:

  • Injection site reaction
  • Fatigue, physical weakness, and lack of energy
  • Fluid retention
  • Insomnia (difficulty sleeping)
  • Headache
  • High blood sugar

The most common side effects for the treatment of infantile spasms (IS) are:

  • Increased risk of infections
  • Convulsions
  • High blood pressure
  • Irritability
  • Fever

The above side effects may also be seen in adults and children over 2 years of age. Some children with IS progress to other forms of seizures. IS sometimes makes these seizures, which may become visible after treatment for IS has been completed.

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 www.fda.gov/medwatch. You may also report side effects by calling 1-800-844-2830.

Please see the full Prescribing Information. If you've been prescribed SelfJect, please see the 40-unit or 80-unit Instructions for Use and the 40-unit or 80-unit Quick Reference Guide.

For parents and caregivers of children with infantile spasms, please also see Medication Guide.

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