Learn how to help prevent serious infections with chronic granulomatous disease (CGD)

Read the full video transcript

Some of the things that you can personally do to stay ahead of infections, keeping to your schedule for sure. And for me, it’s living a healthy lifestyle. I like to exercise and lift weights. And just kind of avoiding situations that could put you into potential infection. Some of the potential situations may be, you know, going into a musty basement or like a musty shed, or just driving down a dirt road with your windows down.

The key to lessening the severity of an infection is getting ahead of it. The worst thing you can do with CGD is wait. The biggest one for me is when I get a fever. When my body starts to get in a fever-like state. So if I have chills, if I feel hot, um, that usually doesn’t happen for me. If the fever lasts for more than 2 or 3 days, then I would begin to take action. I would go get a blood test or call my physician.

Some of the things that we did to avoid infections were when it was fall, no jumping in the leaves because it’s that time of the year where everything’s floating around. Bacteria, mold, needs a place to land, and they’re looking for a nice, moist place to land. Stay away from dry, dusty wind. Stay away from basements that that are moist and moldy and smell funny. Don’t even give that a second thought.

So my advice for other parents to stay ahead of infections is just make sure your kids are washing their hands all the time. Hand sanitizer. As crazy as it sounds, you know, make sure that you’re dusting. That there’s no dust or dirt on anything. Make sure that they know how to take care of themselves, whether that’s you know, coming in from outside playing, you know, go straight to the bathroom, and wash your hands. Or drinking from a water bottle. Just simple things like that.

Definitely take your medicine how you’re supposed to take your medicine. It all works together. And if you, you know, let one thing go and not you know, and not keep up on all of it and be consistent, you’re asking for trouble.

But let them enjoy life. Why keep them in a bubble? Sometimes you just gotta let them live their lives to the fullest.

Fungi and bacteria live all around us. It’s important to take extra steps to avoid them and help prevent an infection from becoming more serious. Cindi, a caregiver to her 5 sons with CGD, says, “Anytime there’s a fever or thick glands, I know it’s a warning sign and we have to go the doctor.” Watch the video above and look below for more tips to help you stay one step ahead of serious infections.

Listen to your body

Many caregivers and people with CGD can tell when something isn’t quite right. In some cases it’s an unusual pain or their body just feels “off.” Other caregivers notice when their child has mood changes or is constantly going to the bathroom. If you or your loved one feel this way, it’s important to call your doctor. While you may think you’re overreacting, it’s always better to be on the safe side.

Spot the signs and symptoms

To anyone else, a low-grade fever or a scrape from a fall isn’t a big deal. For a person with CGD, it can be serious or life threatening. Infections in people with CGD are different because they don’t go away or they keep coming back. If you know what to look for, you can help stop them before they get out of control. Be sure to seek medical help for these common signs and symptoms:

  • Skin infections that cause boils, blisters, and sores
  • Pneumonia
  • Constant diarrhea
  • Pain in the stomach
  • Pain when eating or peeing
  • Vomiting after eating

Other signs and symptoms you can’t see or may not notice right away include:

  • Infections in the liver or bones
  • Inflammation in the intestine
  • Weight loss
  • A child being small for his or her age

Prevention starts with you

It may seem obvious, but living a healthy lifestyle and taking your medicine as prescribed can help prevent serious infections. Antifungals, antibiotics, and ACTIMMUNE® (Interferon gamma-1b) are recommended for people living with CGD. Don’t use ACTIMMUNE® if you are allergic to interferon gamma, E coli-derived products, or any ingredients contained in the product. As these medicines are working in your body, you’re doing your part to help stay healthy.

Remember, with careful planning and staying alert, you can lower the chance of getting serious infections.

Turn your inbox into a help box

Stay updated with helpful information about managing CGD.

Important Safety Information

What is ACTIMMUNE® (Interferon gamma-1b) used for?

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.

When should I not take ACTIMMUNE?

Don't 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?

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.

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 cardiac 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 at 3-month intervals on ACTIMMUNE therapy

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 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.

What other medications might interact with ACTIMMUNE?

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.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

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.