Watch these videos for more information about living with CGD and see what goes into managing your—or your loved one's—condition.
Dr. Artemio Jongco: Building a trusting and open relationship with your medical providers isn't always easy, but one good rule of thumb is to make sure that you're honest about what your expectations are, what your goals of care are, and what you expect from your providers.
Dr. Nicholas Hartog: The one thing I recommend is making sure you have a point person, you have somebody who is in control of the disease, in control of the team, talking with everyone, making sure all the specialists talk, everyone's on the same page, to get the best care out of the team that's helping to take care of your child.
Dr. Hana Neibur: CGD is a hard disease to understand, especially because it can do so many different things. So when you go to see your doctor, it's important to write down your questions before you go, and write down your answers. Get the information you need, and don't be afraid to ask those questions. You need to feel confident in the care your child is getting. And if you don't feel confident, you need to ask more questions.
[Dr. Artemio Jongco:] Patient's family members should feel empowered to demand that their doctors have open lines of communication with everyone on the team involved in delivering care. And then when things don't quite meet your expectations, or you feel that one part of the team isn't quite living up to their job, then make sure you let them know and give them a chance to fix it.
Stay updated with helpful information about managing CGD.
ACTIMMUNE® is part of a drug regimen 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. CGD is often treated (though not cured) with antibiotics, antifungals, and ACTIMMUNE.
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.
Don't use ACTIMMUNE if you are allergic to interferon-gamma, E coli-derived products, or any ingredients contained in the product.
At high doses, ACTIMMUNE can cause (flu-like) symptoms, which may worsen some pre-existing heart conditions.
ACTIMMUNE may cause decreased mental status, walking disturbances, and dizziness, particularly at very high doses. These symptoms are usually reversible within a few days upon dose reduction or discontinuation of therapy.
Bone marrow function may be suppressed with ACTIMMUNE, and decreased production of cells important to the body may occur. This effect, which can be severe, is usually reversible when the drug is discontinued or the dose is reduced.
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.
In rare cases, ACTIMMUNE can cause severe allergic reactions and/or rash. If you experience a serious reaction to ACTIMMUNE, discontinue it immediately and contact your doctor or seek medical help.
Be sure to tell your doctor about all the medications you are taking.
Tell your doctor if you:
The most common side effects with ACTIMMUNE are "flu-like" symptoms such as fever, headache, chills, muscle pain, or fatigue, which may decrease in severity as treatment continues. Bedtime administration of ACTIMMUNE may help reduce some of these symptoms. Acetaminophen may be helpful in preventing fever and headache.
Some drugs may interact with ACTIMMUNE to potentially increase the risk of damage to your heart or nervous system, such as certain chemotherapy drugs. Tell your doctor about all other medications you are taking.
Avoid taking ACTIMMUNE at the same time as a vaccination.
The risk information provided here is not comprehensive. To learn more, talk about ACTIMMUNE with your healthcare provider or pharmacist. The FDA-approved product labeling can be found at http://www.ACTIMMUNE.com or 1-866-479-6742.