Do you take belimumab (Benlysta) for lupus but need to stop because of an upcoming surgery? Are you wondering how putting belimumab on hold will affect your lupus symptoms?

Belimumab is a medication used to treat people with systemic lupus erythematosus (SLE) and lupus nephritis. In some cases, you may need to stop taking belimumab temporarily or permanently. Often, stopping lupus medications can lead to worsening of symptoms and may result in lupus flares.

It’s important to never discontinue your prescribed lupus medications, including belimumab, without first talking with your doctor. They can guide you on how to safely stop a treatment. Researchers are still figuring out the best ways to discontinue belimumab, but initial findings suggest that it can be safely stopped when tapered off slowly.

How Does Belimumab Work, and When Must It Be Stopped?

Belimumab (Benlysta) is the first drug approved by the U.S. Food and Drug Administration (FDA) specifically to treat autoantibody-positive SLE and lupus nephritis. It’s a biologic drug, or a drug derived from a living organism.

As a monoclonal antibody (a lab-made molecule), belimumab blocks the activity of a protein called B-lymphocyte stimulator, also known as B-cell activating factor (BAFF). BAFF stimulates the production of autoantibodies, which are proteins made by the immune system that target a person’s own cells and tissues. People with autoimmune diseases, including lupus, have elevated levels of certain types of autoantibodies. These autoantibodies disrupt normal functions of the immune system and lead to tissue damage.

When people with SLE or lupus nephritis use belimumab at high doses for a long period of time, the drug:

• Reduces levels of autoantibodies
• Decreases the dosage of standard therapy (steroids) needed
• Lowers the risk of severe lupus flares

Stopping Belimumab Due to Side Effects

Some people using belimumab may have allergic reactions or experience severe adverse reactions (side effects) and need to stop the treatment. Serious side effects of belimumab include:

• Serious infections
• Life-threatening hypersensitivity reactions, including anaphylaxis (an allergic reaction that affects the whole body)
• Depression and suicidal thoughts
• Increased risk of developing cancer

Stopping Belimumab for an Upcoming Surgery

If you’re planning to have surgery, belimumab treatment needs to be stopped to prevent infections and promote healing.

A MyLupusTeam member shared their experience: “Unfortunately, I had to stop the belimumab while my back heals. I called the rheumatologist to confirm, and she said to stop until I am fully healed. So because of that, lupus symptoms have come back. I’m really hurting this morning.”

What Are Possible Withdrawal Effects of Belimumab?

As with halting other medications, stopping belimumab can cause withdrawal symptoms that affect many parts of the body. If you’re discontinuing belimumab treatment, look for the following withdrawal symptoms reported by MyLupusTeam members, and ask your doctor about ways to manage them.

1. Fatigue

A common symptom people experienced after stopping belimumab treatment is fatigue. “I used to be on Benlysta and stopped a while ago. Fatigue has come back fiercely,” shared one member.

Fatigue is a common lupus symptom and may be a sign of flare. Talk to your doctor if new fatigue after stopping any lupus medication reduces your quality of life.

2. Rash

Another belimumab withdrawal symptom reported is rash. “I was taking regular monthly Benlysta infusions and doing well. About six months ago, I decided to stop them to see if it made a difference,” one member said. “The past two months have been rashes, very dry mouth, thrush, fatigue, and very bad hip, back, and joint pain.”

Like fatigue, rash is a common lupus symptom, especially if you experience photosensitivity (sensitivity to the sunlight). You may want to take extra precautions to protect yourself from exposure to the sun’s ultraviolet rays if you’ve recently discontinued belimumab.

3. Joint Pain

MyLupusTeam members who stopped belimumab treatment report experiencing joint pain, which is also a withdrawal symptom of other lupus medications, such as glucocorticoids. Talk to your doctor if you develop new joint pain after discontinuing medication and if the symptom continues or gets worse over time.

4. Memory Loss and Confusion

One member discussed how stopping belimumab affected their cognitive ability: “Does anybody else have forgetfulness and confusion? I had been on Benlysta for two years. My memory was good. Once in a while, I forgot things. Nothing like now … that I’ve stopped Benlysta for a month and a half.”

Other withdrawal symptoms observed in a case report series (a group of reports involving individuals given a similar treatment) on three people who discontinued belimumab included:

• Fever
• Headache
• Low blood cell counts
• Severe abdominal pain
• Weight loss

This case study involved just a few people, so it’s not certain how many people stopping belimumab would develop those symptoms, and it doesn’t mean that you would experience any of them.

Does Discontinuing Belimumab Affect Lupus Flares?

How your body will react to stopping lupus medications depends on many factors. For example, researchers have found that two risk factors increase the likelihood of a lupus flare after stopping a glucocorticoid: being younger and having lupus that is “serologically active yet clinically quiescent.” This term is used by researchers to describe lupus cases that show high levels of autoantibodies on blood tests but few physical symptoms.

Although there’s limited research on how discontinuing belimumab affects the risk of lupus flares, a small 2022 study showed higher rates of flares and more severe symptoms in people with SLE who stopped treatment abruptly. Researchers have noted that in some cases, stopping the treatment led to lupus nephritis or renal flares.

“I am off of Benlysta until my neck is healed, and my lupus symptoms are worse now,” one MyLupusTeam member shared. “I can’t wait to get back on it.”

What Causes Symptoms When Stopping Belimumab?

Researchers believe that a rebound of BAFF levels after discontinuing belimumab may trigger withdrawal flares. The BAFF protein stimulates the production of autoantibodies found in many autoimmune diseases. Researchers have reported a rise in BAFF levels in people with rheumatoid arthritis and people with lupus who discontinued rituximab (Rituxan), a biologic drug that works in a similar way as belimumab — by lowering autoantibody levels.

One preliminary study showed that tapering off belimumab gradually, in multiple stages, did not worsen disease activity. Slowly easing off the medication may help keep BAFF levels from rebounding and will help prevent lupus flares after discontinuing belimumab, according to the researchers.

Ask Your Health Care Provider How To Discontinue Belimumab Safely

If you’re on belimumab and need to discontinue the treatment or stop taking it for a long time, talk to your health care provider about a safe approach. Your doctor may recommend a schedule to slowly taper off, minimizing your risk of flares and withdrawal symptoms.

Your doctor may give you other medications, such as hydroxychloroquine (Plaquenil), prednisone, or cyclophosphamide (Cytoxan), to treat lupus symptoms. They’ll also suggest ways to manage any side effects you may experience.

Talk With Others Who Understand

MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 223,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

Have you discontinued or temporarily stopped belimumab (Benlysta) treatment? Did you have withdrawal symptoms? Share your experience in the comments below, or start a conversation by posting on your Activities page.