If you’ve recently been diagnosed with autoimmune hemolytic anemia (AIHA), you might be wondering what your treatment options are. Corticosteroids — also known as glucocorticoids or steroids — are a mainstay treatment for AIHA. Your doctor or hematologist (a doctor who specializes in treating blood disorders) will discuss your treatment options and whether corticosteroids might be right for you.

In this article, we’ll cover what corticosteroids are, how they work to treat AIHA, and when you might be prescribed them. We’ll also discuss common side effects of corticosteroids and share other myAIHAteam members’ experiences with these medications.

What Are Corticosteroids?

Corticosteroids are a class of drugs that work similarly to the hormone cortisol, which is found naturally in our bodies. These medications are used to treat many autoimmune diseases, including AIHA. Corticosteroids help reduce inflammation in the body and calm down overactive immune systems.

AIHA is caused by a faulty immune system, which mistakes your red blood cells (RBCs) for foreign invaders. It makes autoantibodies or specialized proteins that bind to RBCs, tagging them for destruction.

Corticosteroids help treat AIHA by blocking immune cells known as B cells from making autoantibodies. These drugs also stop other immune cells, known as macrophages, from “eating” or engulfing your red blood cells that are covered in autoantibodies. Both of these effects keep your RBCs from being destroyed. As a result, your blood cell counts and RBC hemoglobin (protein) levels rise, and your AIHA symptoms begin to resolve.

When Are Corticosteroids Used To Treat AIHA?

Corticosteroids are typically a first-line treatment, meaning they’re the first option used for AIHA. It’s important to note that there are two types of AIHA — warm AIHA and cold AIHA (with two subtypes, cold agglutinin disease and paroxysmal cold hemoglobinuria) — and they’re treated differently.

Warm AIHA occurs when immunoglobulin G (IgG) autoantibodies bind to your red blood cells at a normal body temperature. On the other hand, cold AIHA occurs when IgM antibodies bind to your RBCs at lower temperatures. Your immune system recognizes these antibodies and destroys your RBCs in a process known as hemolysis. This destruction is responsible for your AIHA symptoms, such as fatigue, dizziness, and shortness of breath.

Doctors have found that corticosteroids work best for treating warm AIHA. Studies show that they’re effective in 70 percent to 85 percent of people with warm AIHA, though they’re not intended to be used long term. Unfortunately, corticosteroids aren’t as effective for treating cold AIHA.

What Types of Corticosteroids Are Used To Treat AIHA?

A few corticosteroids are used to treat AIHA — prednisone, prednisolone, and dexamethasone. You’ll likely start treatment with high-dose prednisone, the most commonly prescribed of the three.

Your doctor or hematologist will measure your RBC count and hemoglobin levels before and during your treatment. Most people see their counts rise within two weeks of starting treatment. Once your levels are under control, your doctor or hematologist will gradually lower your dose. This is because taking high doses of corticosteroids for a long time can lead to unwanted side effects.

Some myAIHAteam members have shared their experiences with starting corticosteroid treatment. One asked, “How long have you been taking oral prednisolone, and at what dosage? What results have you achieved in terms of hemoglobin levels and overall wellness?”

Another member replied, “Had to increase to 40 milligrams for a few weeks as my hemoglobin level dropped to 6.8. It responded and is now up to 10.3. My dosage will decrease depending on my bloodwork.”

Benefits and Downsides of Corticosteroids for AIHA

All treatments come with their own set of benefits and downsides. Your doctor or hematologist will take these into consideration when choosing to prescribe you corticosteroids or other AIHA treatments.

Corticosteroids work quickly to treat AIHA, and you may start feeling better after just a week or two on the drug. Other treatments — like immunosuppressants — can take weeks to begin working.

However, there’s a chance that your AIHA will become resistant to treatment. Some studies show that up to half of people who initially respond to high-dose corticosteroids eventually stop responding.

Common Side Effects of Corticosteroids

Although corticosteroids are an effective treatment for AIHA, they can come with some unwanted side effects. Since they’re taken by mouth, corticosteroids can affect your entire body. Commonly reported side effects include:

• Nausea or upset stomach
• Swelling in your legs, caused by fluid buildup
• Mood swings
• Confusion and memory problems
• Weight gain in your face, belly, or the back of your neck (known as Cushing’s syndrome)
• Increased risk of infection

If you take corticosteroids for too long, they can start to have lasting effects on your body. You may develop eye problems, high blood sugar, osteoporosis (brittle bones), or thin skin that bruises easily.

Some myAIHATeam members have experienced changes in their energy levels when taking prednisone. “Taking the steroid pills — anyone else have such low energy taking prednisone?” asked one member.

Members’ replies included the following:

• “I read sleeplessness comes with it — it did affect me that way but not all the time.”
• “I’m on 20 milligrams of prednisone twice a day. I have energy, but I feel jittery and can’t sleep.”

If you’re experiencing any unwanted side effects while taking a corticosteroid, talk to your doctor or hematologist. They may adjust your dosing or switch you to a different medication if needed.

Treatment Options if Corticosteroids Stop Working

If your AIHA symptoms don’t improve after three weeks of taking a corticosteroid, your AIHA is considered resistant or refractory to the drug. Your doctor or hematologist will put together a treatment plan with other medication options. The second-line treatments they choose will depend on the type of AIHA you have.

If you have warm AIHA, you may undergo a splenectomy, a type of surgery to remove your spleen. Your spleen is part of your immune system that filters your blood — antibody-coated RBCs are typically destroyed in this organ. Another option for warm AIHA involves reducing your immune system function with immunosuppressive drugs, which include azathioprine (Imuran, Asazan), mycophenolate mofetil (CellCept), and cyclophosphamide (Cytoxan, Neosar).

Since cold AIHA can’t be treated with corticosteroids, the recommended first-line treatment is rituximab (Rituxan). This laboratory-engineered monoclonal antibody drug blocks your B cells from making autoantibodies. Rituximab can also be used to treat warm AIHA that stops responding to corticosteroids.

Talk With Others Who Understand

On myAIHATeam, the social network for people with AIHA and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with AIHA.

Have you taken corticosteroids to treat your AIHA? How did they help improve your red blood cell or hemoglobin counts? Share your experience in the comments below, or start a conversation by posting on your Activities page.