Chronic granulomatous disease (CGD)
support
A network of support
People with chronic granulomatous disease (CGD) who are prescribed ACTIMMUNE® (Interferon gamma-1b)—and their caregivers—have access to Amgen By Your Side, a program that provides a full range of support services.
The Amgen By Your Side team includes:
- The Clinical Nurse Educator (CNE) is the main point of contact for all your non-medical needs and concerns about CGD and treatment with ACTIMMUNE. They offer support for starting treatment, learning to manage CGD, or staying connected to the community
- The Case Manager works with insurance companies to determine your coverage and coordinate delivery of ACTIMMUNE through a specialty pharmacy
- Additional support team members help people with CGD and their caregivers connect with others through social media communities, peer mentor programs, and live events
Get support from Amgen By Your Side
Talk to a CGD Nurse Advocate
Interested in learning more about CGD? The CGD Nurse Advocate call center can answer your questions and help you better understand the CGD experience. CGD Nurse Advocates do not provide individual patient care or medical advice. Reach out Monday–Friday from 8 AM to 8 PM ET at 1-833-346-9243.
Developing a support network
If you’re living with CGD, you don’t have to feel like you’re alone.
[Dr. Hana Neibur:] One of the hard things about being a family with CGD is that it is a very rare disease. So it can be very isolating.
Dr. Nicholas Hartog: It may be very uncommon for you to even know anyone else in your life that has this disease.
[Dr. Hana Neibur:] There are patient and family and parent support groups out there. They can help you feel less alone. I think that sense of community helps acceptance of the fact that your child does have a chronic illness.
Our commitment to the CGD community
Amgen provides support to many organizations that provide a wide range of crucial programs and services for people living with CGD and other rare diseases.
Check out Support for the CGD Community
for more information about services available to your family.
If you would like to speak with Amgen about our work—or have ideas you would like to share—please send an e-mail to cgdpartners@amgen.com.
Your best support is your care team
Find a CGD specialist near you and get the care you need.
Approved Uses and Important Safety Information
What is ACTIMMUNE® (Interferon gamma-1b) used for?
ACTIMMUNE is used to treat chronic granulomatous disease, or CGD. CGD is a genetic disorder, usually diagnosed in childhood, that affects some cells of the immune system and the body’s ability to fight infections effectively.
ACTIMMUNE is also used to slow the worsening of severe, malignant osteopetrosis (SMO). SMO is a genetic disorder that affects normal bone formation and is usually diagnosed in the first few months after birth.
When should I not take ACTIMMUNE?
Do not use ACTIMMUNE if you are allergic to interferon gamma, E. coli-derived products, or any ingredients contained in the product.
What warnings should I know about ACTIMMUNE?
ACTIMMUNE can cause flu-like symptoms. At high doses, the resulting symptoms may worsen some pre-existing heart conditions.
ACTIMMUNE may cause decreased mental status, such as confusion, depression, and hallucinations. It may also cause difficulty walking and dizziness, particularly at high doses. These symptoms usually resolve a few days after reducing the amount of ACTIMMUNE you take, or if you are no longer taking it at all, as prescribed by your doctor.
Use of ACTIMMUNE may affect bone marrow function and may limit the production of cells important to your body. This can be severe and usually goes away after reducing the amount of ACTIMMUNE you take or if you stop taking it entirely as prescribed by your doctor.
Taking ACTIMMUNE may cause reversible changes to your liver function, particularly in patients less than 1 year old. Your doctor should monitor your liver function every 3 months, and monthly in children under 1 year of age.
In rare cases, ACTIMMUNE can cause severe allergic reactions and/or rash. If you experience a serious reaction to ACTIMMUNE, stop taking it immediately and contact your doctor or seek medical help.
What should I tell my healthcare provider?
Be sure to tell your doctor about all the medications you are taking.
Tell your doctor if you:
- are pregnant or plan to become pregnant or plan to nurse
- have a heart condition such as irregular heartbeat, heart failure, or decreased blood flow to your heart
- have a history of seizures or other neurologic disorders
- have, or have had, reduced bone marrow function. Your doctor will monitor these cells with blood tests at the beginning of therapy and every 3 months while you are taking ACTIMMUNE
What are the side effects of ACTIMMUNE?
The most common side effects with ACTIMMUNE are “flu-like” symptoms such as fever, headache, chills, muscle pain, or fatigue, which may decrease the longer you take ACTIMMUNE. Taking ACTIMMUNE at bedtime may help with these symptoms, and acetaminophen may help prevent fever and headache.
What other medications might interact with ACTIMMUNE?
Some drugs, like certain chemotherapy drugs, may interact with ACTIMMUNE and could make it more likely that your heart or nervous system could be damaged. Tell your doctor about all the medicines you take.
Avoid taking ACTIMMUNE at the same time as a vaccination.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/safety/medwatch, or call 1-800-FDA-1088.
The risk information provided here is not comprehensive. To learn more, talk about ACTIMMUNE with your health care provider or pharmacist. The FDA-approved product labeling can be found at www.ACTIMMUNE.com or 1-866-479-6742.
Approved Uses and Important Safety Information
What is ACTIMMUNE® (Interferon gamma-1b) used for?
Approved Uses and Important Safety Information
What is ACTIMMUNE® (Interferon gamma-1b) used for?
Approved Uses and Important Safety Information
What is ACTIMMUNE® (Interferon gamma-1b) used for?
ACTIMMUNE is used to treat chronic granulomatous disease, or CGD.
Approved Uses and Important Safety Information
What is ACTIMMUNE® (Interferon gamma-1b) used for?
ACTIMMUNE is used to treat chronic granulomatous disease, or CGD.
Approved Uses and Important Safety Information
What is ACTIMMUNE® (Interferon gamma-1b) used for?
ACTIMMUNE is used to treat chronic granulomatous disease, or CGD. CGD is a genetic disorder, usually diagnosed in childhood, that affects some cells of the immune system and the body’s ability to fight infections effectively.
ACTIMMUNE is also used to slow the worsening of severe, malignant osteopetrosis (SMO). SMO is a genetic disorder that affects normal bone formation and is usually diagnosed in the first few months after birth.
When should I not take ACTIMMUNE?
Do not use ACTIMMUNE if you are allergic to interferon gamma, E. coli-derived products, or any ingredients contained in the product.
What warnings should I know about ACTIMMUNE?
ACTIMMUNE can cause flu-like symptoms. At high doses, the resulting symptoms may worsen some pre-existing heart conditions.
ACTIMMUNE may cause decreased mental status, such as confusion, depression, and hallucinations. It may also cause difficulty walking and dizziness, particularly at high doses. These symptoms usually resolve a few days after reducing the amount of ACTIMMUNE you take, or if you are no longer taking it at all, as prescribed by your doctor.
Use of ACTIMMUNE may affect bone marrow function and may limit the production of cells important to your body. This can be severe and usually goes away after reducing the amount of ACTIMMUNE you take or if you stop taking it entirely as prescribed by your doctor.
Taking ACTIMMUNE may cause reversible changes to your liver function, particularly in patients less than 1 year old. Your doctor should monitor your liver function every 3 months, and monthly in children under 1 year of age.
In rare cases, ACTIMMUNE can cause severe allergic reactions and/or rash. If you experience a serious reaction to ACTIMMUNE, stop taking it immediately and contact your doctor or seek medical help.
What should I tell my healthcare provider?
Be sure to tell your doctor about all the medications you are taking.
Tell your doctor if you:
- are pregnant or plan to become pregnant or plan to nurse
- have a heart condition such as irregular heartbeat, heart failure, or decreased blood flow to your heart
- have a history of seizures or other neurologic disorders
- have, or have had, reduced bone marrow function. Your doctor will monitor these cells with blood tests at the beginning of therapy and every 3 months while you are taking ACTIMMUNE
What are the side effects of ACTIMMUNE?
The most common side effects with ACTIMMUNE are “flu-like” symptoms such as fever, headache, chills, muscle pain, or fatigue, which may decrease the longer you take ACTIMMUNE. Taking ACTIMMUNE at bedtime may help with these symptoms, and acetaminophen may help prevent fever and headache.
What other medications might interact with ACTIMMUNE?
Some drugs, like certain chemotherapy drugs, may interact with ACTIMMUNE and could make it more likely that your heart or nervous system could be damaged. Tell your doctor about all the medicines you take.
Avoid taking ACTIMMUNE at the same time as a vaccination.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/safety/medwatch, or call 1-800-FDA-1088.
The risk information provided here is not comprehensive. To learn more, talk about ACTIMMUNE with your health care provider or pharmacist. The FDA-approved product labeling can be found at www.ACTIMMUNE.com or 1-866-479-6742.