Tips to help you get the care you need at the hospital

Most of the time, you don’t plan on a trip to the hospital. But infections can happen suddenly, so it’s important to be prepared. Here are some tips on how to get the best care at the emergency room (ER) and what to bring to make your visit easier on you or your loved one.

About you

It may be helpful to organize a binder or folder that includes important health information and documents. In addition to having a hard copy, consider storing your information online using Google Docs or a mobile app like My Medical. This allows you to access your information no matter where you are. Include information such as:

  • Your primary care doctor's name, phone and fax number, and clinic information
  • All specialists' names and numbers (like gastroenterologist and immunologist)
  • Your emergency contact’s name and number
  • A list of medicines you’re taking and dosage
  • Any allergies you may have
  • A record of where, when, and what type of infections you’ve had in the past
  • A record of hospital visits and tests performed

About CGD

Because CGD is rare, you may have to educate the hospital staff about CGD. Use the following to help describe your condition:

  • Get a letter from your doctor to show to hospital staff, explaining that you or your loved one has CGD
  • Explain that CGD is a disease of the immune system that greatly limits the ability of the body to fight infections from certain bacteria and fungi. Let them know that unusual infections are not uncommon in people with CGD
  • Point out that just because you don’t “look very sick” doesn’t mean you aren’t. Make clear that a low-grade fever or a cold can be very serious and life threatening. Be sure the doctors culture the infection to determine the specific type of bacteria or fungi. Be firm that you need medical help. You know your body or your loved one better than anyone else

Download the facts about CGD to share at the hospital here


Get a copy of all paperwork from your hospital stay before you leave so you can keep records up to date.

Speak to a hospital social worker

Hospital social workers can be a great resource for you. They assist patients and their families with health-related problems and concerns. Some of their responsibilities include:

  • Understanding a patient’s social, emotional, financial, and support needs
  • Offering counseling to the patient and family
  • Referring patients to a wide variety of community social service agencies
  • Helping patients access financial assistance and health insurance coverage
  • Working closely with health insurers to determine a patient’s benefits
  • Advocating for the patient

Usually a doctor or a member of the healthcare team will request the help of a hospital social worker for you. If you aren’t contacted by a social worker during your stay, speak up. Having a hospital social worker helping you can make a stressful time a little bit easier.

Try to stay calm

A visit to the emergency room can be stressful and frustrating. It is important to try to stay calm for yourself or your loved one. If you are waiting too long or you believe your needs are not being addressed, ask to speak to the nurse in charge. If possible, call your doctor ahead of time. That way your doctor can call the hospital and have everything prepared before you arrive.


If possible, call your doctor ahead of an emergency room visit.

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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, 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 or 1-866-479-6742.