Fatigue is one of the most common symptoms experienced by people with all types of autoimmune hemolytic anemia (AIHA). Fatigue is a level of tiredness that is different from sleepiness. Many people experience occasional fatigue, but medical conditions like AIHA can cause fatigue that lasts longer and significantly affects work and social activities.
Doctors and scientists don’t know the exact biological cause of fatigue, but lifestyle choices, medical conditions, and medications can all contribute to the condition.
AIHA is a rare disease that causes anemia. Anemia means the body doesn’t have enough healthy red blood cells to carry oxygen to the rest of the body. All cells in the body need oxygen to turn sugar into energy efficiently. When cells aren’t getting enough oxygen, they don’t make as much energy, and you feel tired.
Studies of many autoimmune diseases have found that oxygen and nutrient supply, mood, and sleep are associated with fatigue. Inflammation is a biological process that affects all of these.
Living with an autoimmune condition means your body may experience constant low-level inflammation. When cells are in this state of inflammation, they switch how they process energy to a faster but less efficient process.
Changing how they process energy in a state of inflammation helps white blood cells rush to fight infection for a short illness like the flu. However, over the long term, the fast and inefficient process can’t produce enough energy for the everyday work of cells. When the cells of the body don’t have enough energy, it can cause the symptom of fatigue.
Treatments for AIHA can sometimes cause fatigue, although this is a less common side effect. Chemotherapy drugs like cyclophosphamide (sold as Cytoxan and Neosar) can cause temporary fatigue.
Fatigue can be a side effect of medications for other health conditions. Common medications that can cause fatigue include:
If you believe your medications may be causing fatigue, talk to your doctor about the type, dose, and timing of the medicines you take.
Fatigue can be a long-lasting symptom of AIHA, but treatments and symptom management techniques can help. People with AIHA can use these approaches to get relief from their fatigue and improve their quality of life.
As always, consult your health care team before trying a new method or changing your approach to managing fatigue.
The most important factor for dealing with AIHA fatigue is making sure your condition is being treated appropriately. Treatment options for AIHA frequently include immunosuppressive medications, corticosteroids like prednisone, and targeted therapies like rituximab (Rituxan). Work with your doctor or treatment team to determine what treatment options are best for you.
Cold agglutinin disease (CAD) is a subtype of AIHA in which IgM autoantibodies cause red blood cells to clump and be destroyed at cold temperatures. People with CAD should carefully control their body temperature and keep their head, face, fingers, and toes warm to minimize red cell destruction.
Vitamin B12, folate (folic acid), and iron are all essential nutrients for creating red blood cells. Vitamin B12 and folate help red blood cells grow, divide, and mature in the bone marrow. Iron is a component in hemoglobin, the molecule in red blood cells that binds oxygen.
People with AIHA need to make enough new red blood cells to compensate for the blood cells being attacked by antibodies from the immune system (hemolysis). Ask your doctor about taking vitamin B12, folate, and iron supplements to help increase your red blood cell counts. These are all available over the counter. Your doctor can also do a blood test to see if you are deficient in these essential nutrients.
Making healthy lifestyle choices can help boost your energy. Make sure you:
Fatigue can be a disruptive symptom of AIHA, but managing fatigue is possible. If you are experiencing fatigue, talk to your health care team. You may need to test for nutrient deficiencies or adjust your treatment plan.
Be honest with your team about any concerns or challenges and ask about strategies to manage fatigue. Consider seeking care from a specialist, like a sleep clinic, nutritionist, or CBT provider, to get resources for managing fatigue that can complement your medical treatment.
On myAIHAteam, you’ll meet other people with AIHA, as well as their loved ones. Here, members who understand life with AIHA come together to share support, advice, and stories from their daily lives.
Have you managed fatigue with AIHA? Share your experiences and thoughts in the comments below or by posting on myAIHAteam.