Chronic granulomatous disease (CGD)
overview
There are approximately 20 people born with CGD each year in the United States
CGD is a rare, inherited disease. It affects the immune system and makes it harder to fight off certain types of infections caused by bacteria and fungi. With CGD, infections that could typically be prevented by a healthy immune system may grow to become serious*, or even life-threatening.
CGD is a chronic condition, meaning it is a persistent disease, and for CGD patients means that it is lifelong.
What is CGD?
Chronic granulomatous disease, or C-G-D, is a rare disease that about 20 children are born with every year in the United States.
People with CGD have an immune system that doesn’t work properly, so they are at more of a risk of getting serious, life-threatening infections that lead to hospitalization.
How does your immune system work? When the immune system finds harmful things in the body, like certain types of fungi and bacteria, it sends extra immune cells, called phagocytes, to the site to kill them. This usually stops an infection before it starts.
People with CGD can usually stop viral infections like a cold or flu, but they can’t stop infections caused by certain fungi and bacteria.
As the immune cells try and fail to kill the fungi or bacteria, they build up and form hard lumps called granulomas.
People with CGD can experience:
- Serious, sudden, and frequent infections in many areas of the body, including the lungs, liver, or bones
- Skin infections that cause boils, blisters, and sores that don’t go away
- Bowel problems from inflammation in the intestines, such as diarrhea, weight loss, and abdominal pain
- Pain or difficulty eating or going to the bathroom
And vomiting
How do you get CGD?
CGD isn’t contagious like a cold. It’s a genetic condition, which means you’re born with it. There are 2 major ways that CGD can be passed down to a child.
Autosomal recessive CGD occurs when both parents pass on a faulty gene to their child.
In autosomal recessive, both parents are carriers of CGD. They have 1 normal copy of the gene and 1 copy of the gene that doesn’t work right.
But the most common way CGD is inherited is X-linked. It is passed down from the mother to her sons because she carries a faulty X chromosome. For this reason, usually only males get X-linked CGD.
In X-linked, the mother is the carrier of CGD.
How to lower the chance of getting serious infections
There are ways to try to help make serious infections with CGD less likely. Medicines to help treat CGD includes antibiotics, antifungals, and interferon gamma, known as ACTIMMUNE®.
ACTIMMUNE® helps lower the risk of serious infection in people with CGD. The most common side effects with ACTIMMUNE® are flu-like symptoms, which may decrease in seriousness as treatment continues.
ACTIMMUNE® can do this because it contains a protein called interferon gamma that’s almost the same as the one the immune system makes naturally as it fights infections.
These treatments help make it possible for people with CGD to spend less time in the hospital and more time doing what they enjoy most.
Understand the basics of CGD
Learn about the prevalence of CGD, common symptoms, risks, testing, and potential treatment.
CGD symptoms can make getting a diagnosis challenging
Although CGD is usually diagnosed before a child is 5 years old, some people with CGD may not show signs until they are a teen or an adult. In some cases, it may be mistaken for conditions with similar symptoms like inflammatory bowel disease (IBD) or lupus. Make sure you understand the signs and symptoms of CGD.
Common symptoms
Infections
Persistent cough
or pneumonia
Gastrointestinal
(GI) granulomas
Skin rashes
Chronic fatigue
When the immune system finds harmful things in the body, like bacteria and fungi, it sends immune cells to kill them. If the infection doesn’t go away, more immune cells show up to try to kill the bacteria or fungi. In time, this buildup forms a hard lump called a granuloma (gran-yoo-low-muh).
The buildup can cause problems in places like the intestine and cause symptoms like pain in the stomach, diarrhea, and weight loss.
CGD is genetic
A genetic condition is caused by a change, or mutation, in a gene. The gene may be passed down to a child from one or both parents. Family members can be tested to find out if they have CGD or are an X-linked carrier. In rare cases, CGD occurs spontaneously. Anyone who has symptoms of CGD should get tested. Find more information on genetics and testing for CGD.
Treatments for CGD can help prevent infection
In addition to making informed health and lifestyle choices, people with CGD can take medicines that help manage symptoms and reduce the risk of serious infections. This may include antibiotics, antifungals, and interferon gamma such as ACTIMMUNE® (Interferon gamma-1b). It’s important to talk to a doctor about treatment options that work best for you or your loved one.Visit ACTIMMUNE.com.
*An infection is considered serious if you have to go to the hospital and/or get intravenous (IV) antibiotics.
CGD Specialist Finder
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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.