Immunocompromised (Immunosuppressed)

What does it mean to be immunocompromised?

Being immunocompromised is a condition where your immune system isn’t working properly. This means it’s weakened and can’t fight infections as easily as it should. You can be born with a condition that compromises your immune system. Or infections, medications, cancer or other health conditions you acquire throughout your life can weaken it.

Immunocompromised is also called having a weakened immune system. You might hear it called “immunosuppression” when it’s due to certain treatments or illnesses that you weren’t born with.

How do you know if you have a compromised immune system?

Getting sick a lot or having unusually long-lasting infections are the most common signs of having a compromised immune system. But on its own, getting sick frequently doesn’t mean your immune system isn’t working properly — the kind of illnesses you get matters. For instance, young kids getting colds all the time is completely normal.

But frequent bacterial infections, pneumonia or specific other illnesses could mean your immune defenses aren’t working as they should. Being immunocompromised can also mean:

• You get illnesses most people fight off without getting sick
• Illnesses that mildly affect most people make you severely sick
• Illnesses linger or it takes a longer time to recover from being sick
• You’re more likely to develop complications than others — like getting pneumonia after having a respiratory virus
• You might be more likely to get sick again with certain viral infections you’ve had in the past, like Epstein-Barr virus or varicella-zoster virus
• You don’t develop antibodies after getting vaccinated

On its own, being immunocompromised doesn’t cause symptoms you can feel. But if you have an illness that causes immunosuppression (like certain cancers), you might notice symptoms like:

• Fatigue
• Night sweats
• Recurring fevers (fevers that come and go multiple times)
• Unintended weight loss
• Swollen lymph nodes

Infections in people with compromised immune systems

A healthcare provider might suspect you have a compromised immune system if you get sick with certain infections that most people fight off easily, including:

• Pneumocystis pneumonia (PCP)
• Symptomatic cytomegalovirus (CMV) infections
• Fungal infections (like coccidioidomycosis, cryptococcosis, and histoplasmosis) that spread to other areas of your body, outside of your lungs
• Frequent bacterial infections
• Frequent or long-lasting illness with pneumonia, herpes simplex, campylobacter or cyclosporiasis

What causes a compromised immune system?

Diseases, the side effects of certain medications, and receiving an organ or stem cell transplant are the most common causes of a compromised immune system. Each can weaken your immune system in different ways.

Diseases and conditions that weaken your immune system

Many diseases can destroy immune cells or affect your body’s ability to properly make them.

Diseases that can cause immunosuppression include:

• Primary immunodeficiency — any condition you’re born with that weakens your immune system, or when your immune system naturally weakens later in life
• HIV (human immunodeficiency virus)
• Cancer — leukemia, lymphoma and multiple myeloma are most likely to affect your immune system, but other cancers can, too
• Diabetes
• Autoimmune diseases
• Sickle cell disease
• Liver cirrhosis
• Viral hepatitis

People without a thymus (where your T cells mature) or spleen (an organ that contains white blood cells and controls their levels) also have a compromised immune system.

Immunosuppressive medications and treatments

Some treatments, like radiation and chemotherapy, weaken your immune system as a side effect. Others suppress your immune system as a part of how they work effectively. For instance, a bone marrow transplant usually destroys all or most of your immune system to replace it with one that works better.

Many medications that treat autoimmune diseases weaken your immune system to prevent it from attacking healthy cells. These include immunosuppressive medications (they reduce your immune system’s level of activity) or immunomodulatory medications (they change how your immune system works).

Immunosuppressive medications and medical treatments include:

• Bone marrow or solid organ transplant
• Chemotherapy
• Radiation therapy
• Corticosteroids (like prednisone, prednisolone and dexamethasone)
• Azathioprine (Imuran®)
• Cyclosporine (Gengraf® and Neoral®)
• Hydroxychloroquine (Plaquenil®)
• Leflunomide (Arava®)
• Methotrexate (Rheumatrex®, Trexall®)
• Sulfasalazine (Azulfidine®)

What are the complications of being immunocompromised?

Having a compromised immune system can increase your risk of life-threatening complications from infectious diseases. Your body can’t fight off infections and they can spread throughout your body. This can lead to organ damage, sepsis and septic shock (extremely low blood pressure). All of these can be fatal. Go to the nearest emergency room if you’re severely ill.

How do healthcare providers diagnose a compromised immune system?

Healthcare providers diagnose a compromised immune system and conditions that cause it by testing your blood and body tissues. Specific tests include:

• Complete blood count
• Antibody testing
• Flow cytometry (counting of immune cells)
• Genetic testing to look for known genetic changes that affect your immune system
• Urinalysis
• HIV testing
• Lymph node biopsy
• Bone marrow biopsy
• Liver biopsy
• CT scan or other imaging tests

How do providers treat someone who’s immunocompromised?

Treatment for a compromised immune system depends on the cause. Providers can treat certain underlying conditions to strengthen your immune system again. Treatments for underlying conditions include:

• Antiretroviral therapy. Antiretroviral therapy can reduce the amount of HIV in your body to amounts so low that it no longer affects your immune system.
• Cancer treatments. Healthcare providers treat cancers that affect your immune system with chemotherapy, radiation and immunotherapy.
• Pegfilgrastim injections (Fulphila®, Neulasta®). This is a shot that can strengthen your immune system by helping your body make more white blood cells if you have a very low white blood cell count (neutropenia).
• Granulocyte transfusion. This is a rare type of blood transfusion for severe neutropenia.
• Stem cell transplant. Providers can treat or cure certain conditions that weaken your immune system with a stem cell transplant.

Other treatment options help you prevent or fight off infections.

Treating infections when you’re immunocompromised

If you’re immunocompromised, you may not be able to treat yourself with just over-the-counter medications when you get sick. Your provider will probably treat you right away for specific infections with antibiotic, antifungal, antiviral or antiparasitic treatments, depending on the type of infection.

Your provider may also treat you in the hospital to help you fight the infection. This could include:

• Monoclonal antibodies
• Convalescent plasma
• Interferon gamma injections
• Intravenous immune globulin (IVIG)

Can I avoid becoming immunocompromised?

Most conditions that weaken your immune system aren’t preventable. Avoiding infections you get from other people is usually the best way to prevent severe complications. It can also prevent infections that weaken your immune system.

You can reduce your infection risk with:

• Preventive measures. Protect yourself from infectious diseases by washing your hands frequently, practicing safe sex and following safe food handling practices.
• Vaccinations. Getting all of your recommended vaccinations helps reduce your risk of certain infections. Ask your provider which ones make sense for you — certain types of vaccines can make you sick if you have a weakened immune system.
• Pre- and post-exposure prophylaxis. Preexposure prophylaxis (PrEP) is available if you’re at a higher risk of being exposed to HIV. Post exposure prophylaxis (PEP) is available if you’ve been exposed to HIV. Post-exposure prophylaxis is also available for hepatitis B.
• Limited exposure. Avoid people who are sick or who’ve been exposed to someone who’s sick. Avoid large crowds by completing errands like grocery shopping at off hours when fewer people are there. This is especially important during cold and flu season and when many people are getting COVID-19 infections.
• Proactive treatments. Your provider may prescribe antibiotics or antifungal treatments to prevent infections.
• Infectious disease screening. Your provider may screen you for certain illnesses — including HIV, hepatitis, tuberculosis, fungal infections and parasitic infections — before starting treatment that can weaken your immune system.

What can I expect if I have a compromised immune system?

Not everyone with a weakened immune system is immunocompromised to the same degree. While everyone who’s immunocompromised has to take precautions, what feels like a minor adjustment to one person may completely change someone else’s lifestyle.

Additionally, some people are only immunocompromised for a short period of time. Others have conditions or need medications that will affect their immune system for life. Talk to your healthcare team about what to expect in your specific situation.

What’s the outlook for some with a compromised immune system?

The outlook for someone with a compromised immune system depends on the underlying cause. Many conditions that weaken your immune system are manageable. But most require lifelong vigilance to prevent infections or treat them right away.

How do I take care of myself?

If you have a compromised immune system, you’ll need to pay extra attention to your health. Even common colds could make you very sick. In addition to specific ways to protect yourself from getting sick, there are some other ways you can take care of yourself:

• Monitor your health. Ask your provider what signs of infections you should look out for and what to do if you have them. These signs might include a fever of a certain temperature or symptoms that last a long time.
• Plan ahead. Carry a mask and hand sanitizer with you. When you travel, know how to get medical care in your destination. Some people carry a card that explains that they have a weakened immune system.
• Get loved ones on board. Talk to your family and friends about taking precautions. They should understand that they can help you stay healthy. Your loved ones should let you know when they aren’t feeling well to avoid spreading infections to you when you see them.
• Make a plan with school and work. Talk to your employer’s human resources department or school (or your child’s school) about adjustments you may need to stay healthy and safe. You may need to work with your healthcare provider to create a plan that details when you or your child would need to miss work or school, and other accommodations. Depending on where you live, reasonable accommodations may be required by law.
• Be open with your healthcare providers. Some people miss appointments in order to avoid being around other people. Talk to your healthcare provider about the best way to get care without putting yourself at risk. See if there’s a way to balance the risk of exposure with making sure to take care of your health by attending appointments. This might include virtual visits or getting appointments at less busy times.
• See if lifestyle changes can help. Ask your healthcare provider if physical activities or food choices can make a difference in your immune health.
• Prioritize your mental health. Constantly monitoring your physical health can take a toll on your mental health, too. Talking to a mental health professional, taking daily walks and other forms of self-care can help lower your stress — which can also support your immune system.

When should I seek care if I’m immunocompromised?

If you have a compromised immune system, talk to your provider about when you should follow up with them and what to do if you think you could have an infection. They might recommend you go straight to the emergency room for certain signs and symptoms. A lot depends on your specific situation, but it’s best to get checked out if there’s anything that doesn’t feel right.

When should I go to the ER?

Ask your provider what signs of illness to look for and when to go to the emergency room. Always go to the ER if you have signs of a serious infection, including:

• Fever (in many cases, this means any temperature above 100.4 degrees Fahrenheit/38 degrees Celsius)
• Confusion or altered mental state
• Severe headache
• Stiff neck
• Frequent vomiting or diarrhea
• Wounds that are red, swollen, painful, oozing or warm to the touch

What questions should I ask my doctor?

It might be helpful to ask your healthcare provider:

• How long will I be immunocompromised — is this temporary or ongoing?
• What steps can I take to protect myself from infections?
• What signs of infection should I look for?
• When should I go to the ER?
• When should I follow up with you?