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Patient stories

Watch videos of people's experiences with Acthar Gel

Acthar Gel is an FDA-approved medication for several conditions. These are some of the people, families, friends, and moments that make up the stories of people treated with Acthar Gel. Individual results may vary.

Acthar Gel patient: Gloria shares her experience of taking Acthar Gel
Rheumatoid Arthritis

Meet Gloria.

Gloria shares how she managed the challenges of rheumatoid arthritis with Acthar Gel.

Acthar Gel patient: Cathy shares her experience of taking Acthar Gel
Systemic Lupus Erythematosus (SLE)

Meet Cathy.

Cathy opens up about her journey with SLE and getting treatment with Acthar Gel. She’s determined to stay positive.

Acthar Gel patient: Kerry shares her experience of taking Acthar Gel
Symptoms of Sarcoidosis

Meet Kerry.

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

Acthar Gel patient: Dianna shares her experience of taking Acthar Gel
Allergic & Inflammatory Eye Conditions Getting Support

Meet Dianna.

Hear about Dianna’s experience with her personal Nurse Navigator and other resources from the Acthar Patient Support Team.

Acthar Gel patient: Brenda shares her experience of taking Acthar Gel
Allergic & Inflammatory Eye Conditions Getting Support

Meet Brenda.

See how Brenda worked with her doctors to find the right treatment for her, and hear her experience with self-injections.

Acthar Gel patient: Dennis shares his experience of taking Acthar Gel
Allergic & Inflammatory Eye Conditions

Meet Dennis.

Dennis shares his experience with Acthar Patient Support, including reimbursement assistance, injection training, and his personal Nurse Navigator.

Acthar Gel patient: Tottie shares her experience of taking Acthar Gel
Polymyositis

Meet Tottie.

Tottie shares her 10-year journey with polymyositis and her experience switching to Acthar Gel. She emphasizes the importance of being an advocate for your own health.

Acthar Gel patient: Cynthia shares her experience of taking Acthar Gel
Dermatomyositis

Meet Cynthia.

Cynthia shares her story of battling dermatomyositis and how results with Acthar Gel helped her gain her positive outlook.

Acthar Gel patient: Don shares his experience of taking Acthar Gel
Excess Urinary Protein

Meet Don.

In this video, Don talks about how his life changed when he was diagnosed with high urine protein levels, and how Acthar Gel helped him achieve remission.

...
Getting Support

Meet Mirna & Lucia.

Hear Mirna’s story about how Acthar Patient Support helped her get treatment for her daughter, Lucia.

Acthar Gel patient and her caregiver: Mirna and Lucia share their experience with Acthar Gel
Getting Support

Meet Mirna & Lucia.

Hear Mirna and Lucia’s story about how Acthar Patient Support helped them persevere throughout Lucia’s treatment.

Acthar Gel patient: Bianca shares her experience of taking Acthar Gel
Getting Support

Meet Bianca.

Bianca outlines her experience with the Acthar Patient Support team and explains how her case manager supported her throughout her treatment journey.

Acthar Gel patient: Kimberly shares her experience of taking Acthar Gel
Multiple Sclerosis Attacks

Meet Kimberly.

Kimberly shares her story of being diagnosed with MS and dealing with MS attacks. Hear how she learned to better manage her MS attacks and about her personal experience with Acthar Gel.

We’d love to hear from you.

Fill out the form below or call 1-888-435-22841-888-435-2284.

Your journey with Acthar Gel is important to us. We’d love to learn more about how Acthar Gel or Acthar Patient Support has helped.

To share your story about a positive experience taking Acthar Gel or getting support, please complete the form below. We may contact you to share your success with other patients.

For a full list of conditions, click here.

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What is Acthar Gel?

Acthar® Gel is a prescription medicine used for:

  • 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 of infantile spasms in infants and children under 2 years of age
  • 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

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

What is Acthar Gel?

Acthar® Gel is a prescription medicine used for:

  • 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 of infantile spasms in infants and children under 2 years of age
  • 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 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
  • Treatment for people with symptoms of sarcoidosis
  • Treatment for flares or on a regular basis (maintenance) in people with systemic lupus erythematosus (lupus)
  • Treatment for flares or on a regular basis (maintenance) in people with dermatomyositis or polymyositis (DM-PM)
  • 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

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
  • 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
  • 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 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 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. Signs of allergic reaction are:
    • 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 masks 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 1-800-FDA-1088 or visit www.fda.gov/medwatch. You may also report side effects by calling 1-800-844-2830 1-800-844-2830.

Please see full Prescribing Information for additional Important Safety Information.

For parents and caregivers of patients with Infantile Spasms, please click here for Important Safety Information.