Are you taking isotretinoin for acne and wondering if it can lead to drug-induced lupus (DIL)? Sometimes, members of MyLupusTeam ponder the very same thing. One member asked if those who took the prescription acne medication isotretinoin “think they got lupus as a side effect.”
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This article will explore if there is any connection between isotretinoin and lupus.
Isotretinoin Overview
Isotretinoin (formerly sold as Accutane) is a medication in the retinoid family of drugs, which are substances that come from vitamin A. It affects your body’s production of an oily substance called sebum that smooths the skin and the development of keratinized epithelial cells (cells that make up the top layer of the skin). “Keratinized” means that cells become tough and hardened by making a strong protein called keratin.
Common Uses
The U.S. Food and Drug Administration (FDA) has approved the use of isotretinoin to treat severe cystic acne — a type of acne that causes cysts and nodules — after other medications have not worked, including antibiotics. It’s the only FDA-approved acne therapy that treats all the leading causes of acne, including sebum production and inflammation.
Doctors sometimes prescribe isotretinoin off-label (for non-FDA approved uses) to treat less-severe acne, certain cancers, and some types of lupus.
Side Effects
Before prescribing isotretinoin, a dermatologist (skin doctor) will ask questions about pregnancy planning, history of autoimmune disease or depression, allergies, and medication history. This is important information to review before starting any medication — especially isotretinoin, because of its potential for toxicity or side effects.
If taken during pregnancy, isotretinoin can cause severe birth defects, miscarriage, and stillbirth.
Other common side effects of isotretinoin include:
- Dry skin
- Dry or irritated eyes
- Dry mouth and chapped lips
- Sun sensitivity
- Initial worsening of acne (usually temporary)
- Eyesight changes, specifically difficulty seeing at night
- Skin disease, including dermatitis (skin inflammation)
- Stomach problems
- Thinning hair
- Muscle and joint pain
- Increased risk of high cholesterol
- Increased risk of bone fracture due to a reduction in bone density
- Pancreatitis (inflammation of the pancreas)
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These side effects should resolve once treatment is stopped. Uncommon but severe side effects of isotretinoin include liver damage and increased brain pressure, which can cause blindness and death.
Some side effects of isotretinoin have been reported but do not have enough research to support a connection. These include:
- Depression and suicidal thoughts — Severe acne itself can cause depression and suicidality, so a risk/benefit conversation with a dermatologist is needed
- Inflammatory bowel disease (IBD)
The American Academy of Dermatology Association recommends close follow-up with a dermatologist while taking isotretinoin, based on its side effects.
Is Lupus a Side Effect?
There is no currently published research, including clinical trials, linking DIL or systemic lupus erythematosus (SLE) to the use of isotretinoin. However, lupus is an established adverse event (unexpected side effect) in acne treatment with systemic antibiotics, including minocycline and tetracycline.
Isotretinoin has also been linked to other autoimmune conditions, including vasculitis (inflammation of the blood vessels) and myositis (inflammation of the muscles). More studies are needed to figure out whether isotretinoin can cause lupus, but so far, no evidence connects the two.
Drug-Induced Lupus
In DIL, a person develops symptoms of SLE due to a drug. DIL tends to be less severe than SLE, but both are autoimmune disorders. Between 6 percent and 12 percent of all lupus cases are DIL, and the condition has an incidence of between 15,000 and 30,000 new cases per year in the United States. DIL is more common in men, according to Lupus Foundation of America, because they are more likely to be prescribed drugs that cause the condition.
Symptoms of DIL
DIL can develop weeks or months into starting a drug. It can sometimes be difficult to tell the difference between DIL and SLE, but those with DIL do not usually have kidney, brain, or blood vessel problems that are common in SLE.
The most common symptoms of DIL include:
- Joint pain (affects up to 90 percent of people with DIL)
- Muscle pain
- Fever
- Weight loss
- Rash
- Serositis (inflammation of the linings of certain organs)
Some symptoms of lupus are nonspecific, meaning that they are also seen in other conditions. Symptoms of lupus show up in flares, meaning that people have symptoms in waves.
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One member of MyLupusTeam commented, “Even during a bad flare, I will have days that are better than others.” Although the pain caused by lupus can seem manageable, that member added, “People with chronic pain are usually in more pain than what they are saying.”
Drugs That Cause DIL
There are hundreds of medications in various drug classes that are linked to DIL. Some examples include:
- Procainamide and quinidine — Medications used to treat abnormal heart rhythms
- Hydralazine — A medication used to treat high blood pressure
- Anti-TNF drugs — Medications used to treat autoimmune conditions
- Isoniazid and rifampin — Antibiotics that treat tuberculosis
- Interferon-alpha — A medication for hepatitis B and C and certain types of cancer
- Phenytoin, carbamazepine, and ethosuximide — Medications for seizures
- Sulfasalazine — A medication used to treat rheumatoid arthritis
If you are taking any of these medications, it’s essential to monitor for lupus symptoms.
Managing and Treating DIL
There are several ways to manage DIL. If someone is taking a drug known to cause DIL and has a positive ANA test result (blood marker for lupus), they should stop taking that drug. In this situation, close monitoring for symptoms is needed.
If a person develops symptoms of DIL, treatment with the medication causing the symptoms should be stopped. Symptoms should stop within a few weeks of discontinuing treatment. Rarely, symptoms can continue for a few months afterward.
Isotretinoin To Treat Lupus
Interestingly, although there is no evidence that isotretinoin causes lupus, there are several case reports of isotretinoin successfully treating some forms of lupus. Some types of lupus mainly affect the skin, including cutaneous lupus erythematosus (CLE) and chronic CLE or discoid lupus, a condition that leads to a disc-shaped rash.
Chronic discoid lupus skin lesions are one of the most common forms of CLE and are found mostly on the face, scalp, and ears. Subacute and chronic CLE often appear in areas of the body exposed to the sun and typically affect only the skin. Acute CLE usually involves other organs and is common in SLE.
Case reports of people with subacute CLE, chronic CLE, and discoid lupus have shown major improvement in symptoms when they were treated with isotretinoin. In one case report, this medication even worked to treat refractory lupus, meaning that the lupus did not respond to other medications, including hydroxychloroquine. Importantly, these studies found that once isotretinoin treatment was stopped, symptoms returned at a higher rate than when using other systemic treatments like methotrexate.
Find Your Team
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.
Are you living with cutaneous lupus and treat acne with isotretinoin? Share your experience in the comments below, or start a conversation by posting on your Activities page.
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