Chronic granulomatous disease (CGD)
caregivers
CGD may affect more than just the person who has it. It may affect their caregiver or care partner, too. As you learn to adjust your everyday life to help keep your loved one healthy, you will find ways to relieve those moments of feeling overwhelmed with some helpful tips.
Reducing caregiver stress
Hear from other caregivers as they share their experiences and helpful tips about finding balance and managing life with CGD.
My biggest getaway for me when, you know, when I just needed a break or whatever, I would go to my mom cave and paint. I like to paint. I did a lot of painting, and I actually wrote a book about painting. That’s my thing. I like art. I think it is really good to have something you can do, where you can see an accomplishment. If it’s knitting or you know, reading or taking pictures or whatever it is.
One of the things that I would do to just take time away would be to swim. We always had a pool available. A chlorinated pool for Dustin to swim. And even if Dustin was in the pool, exercising in general will take stress off of you. You can walk with your child. Push him in a stroller. It’s not getting away from the illness or the child. It’s letting your body release that tension that you’re building up, regardless if it’s with your child or without.
I’m a carrier, and I sometimes forget that I need to take time off and just, even if it’s just going down for a cup of coffee by myself or just enjoying some time by myself, cause everything’s about the kids. 24/7. So my advice to myself and to all the other moms who are carriers is take some time for yourself. Don’t feel guilty because at the end of the day, the kids are fine. They’re doing good. So why not take, you know, an hour a day and just enjoy it for yourself.
Connect with the CGD community
As a community, we can come together and support each other. For patients, caregivers, care partners, and those on—and not on—treatment, these events provide a place to connect with people like you. For more information about attending an upcoming event, email cgdpartners@amgen.com.
ACTiON Meetings
Live or virtual events for CGD patients, carriers, caregivers, and their families.
- Hear presentations from physicians, patients, X-linked carriers, and CNEs
- Participate in informative Q&A sessions
CGD Association of America
CGDAA is committed to helping CGD patients and X-linked carriers know they are not alone through the creation of the largest CGD community.
- Chat, connect, and learn with other moms, sisters, aunts, daughters, and grandmothers
Caregivers can be X-linked carriers too
If you’re a carrier of CGD, it’s important to take extra care of yourself too. Learn more about symptoms and potential risks for X-linked carriers.
Looking for a support network?
We know where to find one. Download resources, find support groups, and see other upcoming events to join with your family.
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.