Expectations for JAK Inhibitor Treatment Icon

Expectations for JAK Inhibitor Treatment

What to Expect

There are currently two FDA-approved JAK inhibitors commercially available for the treatment of alopecia areata: Olumiant® (baricitinib), approved for patients 18 and older, and Litfulo® (ritlecitinib), approved for adolescents and adults 12 years of age and older. In addition, some people with alopecia areata use tofacitinib (Xeljanz), an older JAK inhibitor off-label, as well as upadacitinib (Rinvoq), currently in Phase 3 trials for alopecia areata.

This chapter focuses on JAK inhibitor treatment, in general, and provides an overview of what to expect when taking a JAK inhibitor for alopecia areata.

Are JAK inhibitors covered by commercial insurance?

JAK inhibitors are relatively new, FDA-approved treatments for alopecia areata. For a number of reasons, insurance companies typically require prior authorization for coverage, and some might deny coverage and require an appeal. Learn more about insurance coverage and access to JAK inhibitors in the module, “Understanding Insurance Coverage.”

When should I start treatment?

Studies show that the length of time you have had severe alopecia areata can affect treatment success. Simply stated, the sooner one starts treatment, the greater the likelihood of success. Research  suggests that the effectiveness of JAK inhibitor treatment begins to decline after approximately four years. So, if you’ve had severe alopecia areata for over four years, your chances of success go down a bit each year, though treatment success is still possible. 

 

How long should I expect to take a JAK inhibitor before I see results?

Like all medications, results can vary greatly from one person to another. Some people notice regrowth, or “fuzz,” in just a few weeks. Others may take several months to see it. Studies show most people with alopecia areata do see some regrowth when using a JAK inhibitor; only a small percentage don’t see any results. However, it takes time—many months—for patients to see full or nearly full regrowth. Experts say patients and their doctors cannot tell if a treatment is working for at least six months. Even if hair starts to regrow at six months, it might take several more months for full regrowth. Patients in JAK inhibitor trials showed different timelines for response to treatment. Some had full regrowth in 6 to 9 months. Others took 12 to 18 months for complete regrowth.

The bottom line is that JAK inhibitor treatment takes time, from many months to a year or more. 

 

Will my eyelashes/eye brows/facial hair regrow?

Treatment results and timing of regrowth varied for facial hair, eyebrows and eyelashes regrowth. Some people regrew scalp hair but not eyebrows or lashes. Some regrew scalp hair and eyebrows but not lashes or vice versa. Some regrew lashes and brows but not scalp hair. Others regrew some or all facial and scalp hair but at different times.

 

How long will I need to take a JAK inhibitor once my hair regrows?

Alopecia areata, like other chronic diseases, needs ongoing medication. Treatment with a JAK inhibitor is probably for life–meaning if the treatment helps you regrow hair, but then you stop treatment, your hair most likely will fall out again. Some studies show that a small number of patients kept their hair after stopping or lowering their medication. However, most patients, about 80%, will lose their hair regrowth if they stop treatment.

 

Should I take oral minoxidil?

Although not FDA-approved for alopecia areata, some dermatologists prescribe oral minoxidil off-label in combination with a JAK inhibitor. They have observed an enhanced therapeutic effect, and the combination may accelerate hair regrowth.

 

Will I still have hair loss if I start taking a JAK inhibitor?

Alopecia areata is an autoimmune disease that results in “flares” of hair loss. Sometimes these flares are small patches of hair loss; other times, people experience all over shedding. For some people, depending on where they are in the shedding cycle, a JAK inhibitor might not stop the shedding before it begins regrowth. And some people who have had successful regrowth with a JAK inhibitor might experience flares of hair loss—patches or shedding. Studies show that of those who do experience regrowth, a small percentage may continue to have some flares. Experts suggest talking with your physician about managing these flares with additional therapies, such as intralesional injections or the addition of oral minoxidil.

 

What are the common side effects of JAK inhibitors?

When taking a JAK inhibitor for the treatment of alopecia areata it’s important to be aware of potential side effects, as with any medications. JAK inhibitors suppress the immune system which can increase the risk of infections, such as upper respiratory infections. Some of the most common side effects include headache, diarrhea, acne, rash, hives, and nausea. Less common but important side effects include changes in blood cell counts and elevated cholesterol levels. It’s essential to have regular check-ups with your healthcare provider to monitor for any adverse reactions and to ensure that the medication is working effectively. Always contact your doctor if you experience any unusual symptoms or signs of infection.

 

Why do JAK inhibitors carry a black box warning?

Boxed warnings, formerly known as “black box warnings,” are safety-related warnings that are assigned to medications by the FDA to ensure that consumers and healthcare providers are aware of any major risks associated with a drug. Boxed warnings typically do not apply to any one individual drug but rather to a class, or group, of drugs.

For Olumiant, Litfulo, and all other drugs that fall under the JAK inhibitors class, the boxed warning includes information about the risk for serious infections, mortality, cancer, cardiovascular events, and clotting (thrombosis). The boxed warning that is used on all JAK inhibitor medications is based on a study of tofacitinib (another JAK inhibitor) in patients with rheumatoid arthritis who were aged 50 years and older and who also had at least one cardiovascular risk factor.  These patients were also on methotrexate for their rheumatoid arthritis.

Discuss your personal and family health history, smoking history, as well as medication risks with your healthcare provider in the process of making treatment decisions.

 

I want to start JAK inhibitor treatment for alopecia areata. How do I advocate for myself with my dermatologist?

If you are considering JAK inhibitor treatment, it’s important to be proactive in advocating for yourself with your doctor. Start by educating yourself about the benefits and potential risks of JAK inhibitors, so you can have an informed discussion. NAAF provides information on our website about the two currently available FDA-approved JAK inhibitors, Olumiant and Litfulo, as well as information about working with your healthcare provider, and how to obtain coverage for the treatment.

Share treatment goals clearly. Talk about how alopecia areata has affected you physically, emotionally, or socially. Ask if they know the latest research and prescribing information for JAK inhibitor treatment. Discuss your medical history and any other treatments you’ve tried, and express your willingness to explore new options. If your doctor is hesitant or unwilling to discuss JAK inhibitors for you, you might want to consider another dermatologist who has more expertise in managing alopecia areata with newer therapies. (Try locating one through NAAF’s Doc Finder.) It’s important to remain respectful with your healthcare provider, but persistent in ensuring your voice is heard as an active participant in your care.

 

 

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