It’s natural to wonder how a new lupus treatment might affect your appearance and hair. One such treatment is mycophenolate, formulations of which are sold as CellCept and Myfortic. “I was just wondering how hair loss was with mycophenolate (CellCept),” one MyLupusTeam member asked before switching to the drug from azathioprine (Imuran). “The azathioprine really thinned my hair out already, and I was just wondering what to expect.”

Your hair can be an important part of your identity and appearance. One MyLupusTeam member commented, “My appearance means a lot to me, and how I look makes me feel better about my illness.”

Even though people can react differently to mycophenolate, it can help to know what side effects to expect before you start taking it.

What Is Mycophenolate?

Mycophenolate is an immunosuppressant medication, originally approved by the U.S. Food and Drug Administration (FDA) to prevent organ rejection after an organ transplant. Its immunosuppressive properties also make it useful for treating and preventing flares in people with types of lupus. It’s most commonly used in treating lupus nephritis, a kidney disease caused by systemic lupus erythematosus (SLE).

Mycophenolate comes in two formulations: mycophenolate mofetil (CellCept) and mycophenolate sodium (Myfortic). Both formulations are usually given twice a day; however, Myfortic is a longer-acting formulation.

Common side effects of both CellCept and Myfortic include include:

• Increased risk of infections
• Diarrhea
• Nausea and vomiting
• Anemia (low red blood cell count)

Other common side effects of CellCept include:

• Leukopenia (low white blood cell count)
• Hypertension (high blood pressure)
• Abdominal pain
• Fluid retention

Other common side effects of Myfortic include:

• Constipation
• Insomnia (trouble sleeping)
• Upset stomach

Can Mycophenolate Cause Hair Loss?

Hair loss — also known as alopecia — is not a common side effect of mycophenolate. However, a few clinical trials list alopecia as a side effect.

In large clinical trials, researchers studied the effects of mycophenolate mofetil in combination with cyclosporine (Neoral) and corticosteroids to prevent organ transplant rejection. They found that between 3 percent and 20 percent of study participants experienced alopecia as a side effect.

In a small long-term study of 33 people taking mycophenolate mofetil to treat their lupus nephritis, one participant experienced alopecia. In another small study of 10 people taking mycophenolate mofetil to treat uveitis (inflammation inside the eye), one person experienced alopecia 10 months after starting treatment.

When there aren’t enough people who experience a side effect in a clinical trial, doctors might describe a rare side effect in a study called a case report. One case report described a 14-year-old girl who developed alopecia two months after starting mycophenolate sodium. When the dose was decreased, the hair loss stopped, and hair started to regrow.

There isn’t any research into how mycophenolate might cause hair loss. However, some of mycophenolate’s more common side effects are linked to hair loss, including anemia and infections.

Can Other Lupus Medications Cause Hair Loss?

Several medications are known to cause hair loss. Some lupus medications that may cause hair loss for some individuals include:

• Immunosuppressive drugs, such as methotrexate (Rheumatrex), leflunomide (Arava), cyclophosphamide (Cytoxan), and voclosporin (Lupkynis)
• Antimalarials, such as hydroxychloroquine (Plaquenil)
• Anticoagulants, including warfarin (Coumadin)
• Nonsteroidal anti-inflammatory drugs (NSAIDs), including ibuprofen (Motrin) and meloxicam (Mobic)

Medications you may take for conditions other than lupus that may cause hair loss include:

• High blood pressure medications, including beta-blockers, such as metoprolol and bisoprolol, and ACE inhibitors, including lisinopril and benazepril
• Cholesterol medications, such as simvastatin (Zocor)
• Antidepressants, such as amitriptyline (Elavil)

This is not a complete list of medications that can cause hair loss. It’s also important to note that not all of these medications cause hair loss in everyone who takes them. Check with your rheumatologist or health care provider about the potential risks and benefits of your medications.

Can Lupus Cause Hair Loss?

Lupus itself can also cause hair loss. Most people with lupus develop skin problems. In lupus, the immune system attacks healthy tissue. If your immune system attacks your skin or hair follicles, it can cause inflammation and rashes that lead to hair loss.

Lupus symptoms that mostly affect your skin are known as cutaneous lupus. Skin problems, like rashes on your scalp, can cause hair loss. People with discoid lupus often develop lesions (round sores) on their scalp or face that can cause hair loss.

Additionally, people with SLE can experience hair thinning from thin, brittle hair during a lupus flare. According to a 2021 study, researchers have observed hair loss in up to 85 percent of people diagnosed with SLE.

Diagnosing Hair Loss

It can be difficult to identify the reason for your hair loss. One MyLupusTeam member shared, “I’ve been on mycophenolate for almost a year. My hair thinned tremendously, but I don’t know if the root cause was lupus, hydroxychloroquine, my thyroid, or mycophenolate since hair loss can be a side effect of all of the above.”

The only way to know for sure if hair loss is due to a drug like mycophenolate is to stop the medication and see if you have new hair growth. Talk to your rheumatologist to see if a change in your treatment plan is possible.

Your doctor might also perform a hair pull test. This test involves gently pulling a cluster of your hair from the root to the tip to see how many hairs are pulled out. It’s normal for one or two hairs to come out during this test. However, if you have excessive shedding, 10 to 15 hairs may be pulled out. By looking at these hairs under a microscope, your health care team might be able to discover the cause of your hair loss.

A scalp biopsy can also help determine the cause of hair loss. During this test, your doctor will take a small sample of the skin in the area where your hair is thinning and examine it under a microscope.

Your doctor might also take a sample of your blood for laboratory tests to see if there might be any other causes of your hair loss. Blood tests for hair loss might include:

• Blood cell count
• Iron tests
• Thyroid function test

Managing Hair Loss in Lupus

If you notice hair loss or your hair thinning, talk to your doctor about the best way to manage and treat hair loss.

If a medication is causing your hair loss, you may see new hair growth in a few months after adjusting your treatment plan. Topical steroids, such as clobetasol (Clobex), can also help hair grow back faster.

For hair loss caused by lupus symptoms, your rheumatologist may prescribe medications to control your disease activity. In this case, mycophenolate may be one of the medications used to improve skin symptoms and improve hair loss.

It’s important to know that some over-the-counter (OTC) medications and supplements for hair loss might not work for hair loss caused by lupus or medications. They may even cause problems with your lupus treatment by interacting with lupus medications. Make sure to talk about any OTC medication or supplement with your rheumatologist before you start taking it.

You can take steps to keep your hair and scalp healthy to prevent or treat hair loss from lupus. A MyLupusTeam member suggested, “Be careful using dyes, rinses, perms etc. I think it comes along with the SLE territory!”

Other ways to prevent hair thinning and loss include:

• Using gentle hair products, such as baby shampoo
• Avoiding chemical and heat damage
• Avoiding hairstyles that pull on the scalp, like tight buns or braids
• Protecting yourself from the sun by wearing sunscreen and protective clothing
• Wearing a head cover such as a wig or headscarf

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 experienced hair loss due to lupus or the medications you’re taking? Share your experience in the comments below, or start a conversation by posting on your Activities page.