Acthar Gel (Repository Corticotropin Injection) for Lupus

What Members Say Top Tips Side Effects Copay Help FAQs

Acthar Gel (repository corticotropin injection) is a prescription medication approved by the U.S. Food and Drug Administration (FDA) to treat systemic lupus erythematosus, also called lupus, during a flare or as maintenance treatment in selected cases.

What Members Say

MHT logo These insights are based on 77 comments about Acthar Gel from MyLupusTeam members. These are the experiences of a small number of people and are not meant to be medical advice.

Benefits:

At-home injections can reduce trips for infusion-based treatment.
Dosing every 24 to 72 hours can fit into a regular routine.
Kidney-related lupus symptoms sometimes improve during treatment.

Considerations:

Acthar Gel can cause steroidlike side effects, including weight gain and a round face.
Infection risk increases during treatment and requires close monitoring.
Treatment may need to be tapered, and stopping suddenly is not recommended.

How Acthar Gel Works and How It’s Taken

Acthar Gel is a naturally sourced complex mixture of adrenocorticotropic hormone (ACTH) analogs and other pituitary peptides. It stimulates the adrenal glands to release natural steroid hormones, including cortisol. The exact way it works in lupus is not fully known.

Doctors prescribe Acthar Gel when someone is having a lupus flare or needs maintenance treatment in selected cases.

Acthar Gel is given as an injection under the skin or into a muscle. The dose and schedule depend on the person’s condition and response to treatment.

Typical Dosing for Lupus

For conditions such as lupus, the usual dose is 40 to 80 units every 24 to 72 hours. The injection may be given under the skin or into a muscle.

Your doctor will choose the dose based on your condition and how you respond.

Do not stop Acthar Gel suddenly unless your healthcare provider tells you to. The dose may need to be lowered slowly, and the time between injections may need to be increased.

This information is based on prescribing information, but your healthcare provider may tailor your treatment plan. Always follow their guidance.

Top Advice From Members on Acthar Gel

MHT logo These insights are based on 77 comments about Acthar Gel from MyLupusTeam members.

Members who use Acthar Gel say their experiences vary widely. Some described major symptom relief, whereas others said it took time, did not help enough, or caused side effects, so many emphasized staying in close touch with their doctors about cost, dosing, and how well it is working.

1

Ask your doctor what results to expect and when.
“I noticed a big difference just after my second shot. I take two shots a week, and it has been an unbelievable life changer for me.”
2

Keep track of side effects and tell your doctor.
“I did Acthar Gel, but it didn’t work for me. The Acthar Gel made my face really round and skin darker.”
3

Ask your doctor about using Acthar Gel to reduce steroid exposure.
“My doctor suggested Acthar as a nonsteroid alternative.”

Connect with others who understand life with lupus. Join MyLupusTeam for free.

Acthar Gel Side Effects

In clinical studies of Acthar Gel for infantile spasms in infants and children under age 2, the most common side effects occurred in 5 percent to 20 percent of children. These include:

Infections
Seizures (convulsions)
High blood pressure
Irritability
Fever

Serious Side Effects and Warnings

Acthar Gel can cause serious side effects that may require immediate medical attention. These include:

Serious infections — Acthar Gel can raise the risk of viral, bacterial, fungal, protozoan, or parasitic infections.
Cushing’s syndrome and adrenal suppression — Steroidlike effects can occur during treatment, and adrenal insufficiency can occur when stopping treatment, causing severe weakness or low blood pressure.
Increased blood pressure, fluid retention, and hypokalemia (low potassium levels) — These effects can cause swelling, worsening blood pressure, or heart-related symptoms.
Gastrointestinal bleeding, ulcers, or perforation — These problems can cause stomach pain, black stools, or vomiting blood.
Severe mood or behavior changes — Insomnia, mood swings, severe depression, or psychosis can occur.
Eye problems — Long-term use can cause cataracts, glaucoma, or eye infections that affect vision.
Severe allergic reactions — Anaphylaxis can cause trouble breathing, hives, swelling, or low blood pressure.
Heart problems — Congestive heart failure or abnormal heart rhythms can occur.
Pancreatitis — Inflammation of the pancreas can cause severe abdominal pain, nausea, or vomiting.
Bone loss and osteoporosis — Weakened bones can increase the risk of fractures.

Get medical help right away if you think you are having a serious reaction.

How To Save on Acthar Gel

The Acthar Gel website offers the Acthar Gel Commercial Co-Pay Program. Eligible people with commercial insurance may pay as little as $0 in copay costs, up to $15,000 per calendar year.

The commercial program is not available to people using government-funded insurance, including Medicare or Medicaid. The financial assistance page also provides information about Medicare and possible no-cost support for eligible people who are uninsured or underinsured.

Acthar Patient Support can connect you with a Case Manager and a Nurse Navigator to help with the insurance approval process and provide injection training and ongoing support. For more information, call 888-435-2284.

What To Know Before Taking Acthar Gel

Do not receive live or live-attenuated vaccines while taking immunosuppressive doses of Acthar Gel.

Tell your doctor if you have any allergies to repository corticotropin injection or any ingredients in Acthar Gel.

Tell your doctor if you are sensitive to proteins from pigs. Acthar Gel should not be used by people with this sensitivity.

Tell your doctor about all medicines you take, including prescription drugs, over-the-counter medicines, vitamins, and herbal supplements. Be sure to mention diuretics, sometimes called water pills, because Acthar Gel may increase the loss of electrolytes caused by these medicines.

Also tell your doctor if you have an infection, tuberculosis, or a past positive tuberculosis test.

Do not use Acthar Gel if you have:

Scleroderma
Osteoporosis
A fungal infection affecting the whole body
Herpes simplex infection of the eye
Recent surgery
A current or past peptic ulcer
Congestive heart failure
Uncontrolled high blood pressure
Primary adrenal insufficiency
Adrenal overactivity
Sensitivity to proteins from pigs

Acthar Gel is also FDA-approved to treat:

Infantile spasms in infants and children under age 2
Acute exacerbations of multiple sclerosis in adults
Adjunctive, short-term therapy during an acute episode or exacerbation of psoriatic arthritis, rheumatoid arthritis, juvenile rheumatoid arthritis in selected cases, or ankylosing spondylitis
Severe erythema multiforme
Stevens-Johnson syndrome
Serum sickness
Severe acute and chronic allergic and inflammatory eye conditions, including keratitis, iritis, iridocyclitis, diffuse posterior uveitis and choroiditis, optic neuritis, chorioretinitis, and anterior segment inflammation
Symptomatic sarcoidosis
Certain forms of nephrotic syndrome, to help remove extra fluid or reduce protein in the urine

If you are pregnant, planning to become pregnant, or breastfeeding while taking Acthar Gel, talk with your doctor about the risks and benefits.

Acthar Gel may cause fetal harm if you are pregnant. Babies born to mothers treated with Acthar Gel should be monitored for signs of low adrenal function.

There are no data showing whether corticotropin passes into breast milk or affects a breastfed baby.

Community FAQs

These answers are fact-checked by our editorial staff.

How effective is Acthar Gel for lupus?

Acthar Gel may be used during a lupus flare or as maintenance treatment in selected cases of systemic lupus erythematosus.

The prescribing information does not include clinical study results for lupus. It does not provide lupus-specific response rates or say how quickly the medicine may work.

Can Acthar Gel cause weight gain or “moon face” in people taking it for lupus?

Yes. Acthar Gel can cause signs of Cushing’s syndrome during treatment, including extra fat in the face, sometimes called “moon face,” weight gain, muscle weakness, high blood sugar, and high blood pressure. Acthar Gel may also change appetite, which can lead to weight gain.

These effects generally go away after treatment is stopped.

What tests or monitoring are needed with Acthar Gel for lupus?

Your doctor may monitor you for infections, signs of Cushing’s syndrome, high blood pressure, fluid retention, and changes in sodium and potassium levels. After long-term treatment is stopped, your doctor may also watch for adrenal insufficiency, which means the adrenal glands are not making enough hormones.

Acthar Gel can hide signs of other health problems, so careful monitoring is important during treatment and for a time after treatment ends. During long-term treatment, your doctor may check your bone density.

Your doctor may also monitor for eye problems such as cataracts, glaucoma, or eye infections.