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Alopecia Universalis: Causes, Symptoms & Options for Managing

Katelyn Hagerty

Reviewed by Katelyn Hagerty, FNP

Written by Nicholas Gibson

Published 04/21/2023

Alopecia universalis (AU) is a rare, severe form of alopecia areata that involves complete loss of hair on your face, scalp and body. It can be challenging to treat, but options are available to help you maintain your hair and enjoy a higher quality of life.

Below, we’ll explain what alopecia universalis is, as well as how it differs from other common forms of hair loss that can affect men.

We’ll also discuss your options for managing this form of autoimmune hair loss, from topical creams and foams to new treatment options such as Janus kinase (JAK) inhibitors.

Alopecia universalis is an uncommon, advanced form of alopecia areata. Unlike most cases of alopecia areata, which involve small patches of hair loss on the scalp, it can involve complete loss of your scalp hair, facial hair and body hair. 

Alopecia universalis is also referred to as “alopecia areata universalis.” When this form of hair loss affects your entire scalp but doesn’t cause significant hair loss on your entire body, it’s commonly referred to as alopecia totalis (AT).

Alopecia universalis and alopecia totalis are both forms of autoimmune hair loss. Experts think this type of hair loss develops when your immune system identifies, targets and damages your hair follicles, causing your hair to stop growing normally.

Compared to male pattern baldness and other types of hair loss, alopecia universalis isn’t very common. In the entire United States, experts think fewer than 200,000 people are affected by this type of alopecia. 

At the moment, researchers aren’t aware of precisely why alopecia universalis and other forms of alopecia areata develop.

Alopecia universalis usually begins as alopecia areata. Less than 10 percent of all people with alopecia areata go on to develop alopecia totalis, with an even smaller percentage developing more advanced alopecia universalis over time.

Common symptoms of alopecia areata include:

  • Sudden hair loss in round or oval-shaped patches

  • Conjoined patches of hair loss that form larger bald spots

  • Hair that grows back white or gray before regaining its natural color

  • Development of ridges and pits in the nails

In very rare cases, alopecia universalis can develop before birth — a condition referred to as alopecia universalis congenita.

While the precise cause of alopecia universalis isn’t known, experts have identified various factors that may contribute to the development of this type of complete hair loss.

These include:

  • Genetic factors. Research from studies of twins and families suggests that there’s a large genetic component to alopecia totalis and universalis, with people more likely to develop this condition if they have a family history of autoimmune hair loss. Experts have even identified specific genes within the human leukocyte antigen (HLA) complex that may contribute to an elevated risk of autoimmune hair loss.

  • Environmental factors. A range of environmental factors, including chronic or severe stress, infections, illnesses and certain medications, might also be involved in alopecia areata, alopecia totalis and alopecia universalis.

Research has found that alopecia areata is linked to other autoimmune diseases, with people affected by vitiligo, lupus erythematosus or autoimmune thyroid disease more likely to develop this form of hair loss.

Alopecia universalis can develop at any age. However, most people affected by alopecia areata — the less advanced form of this type of hair loss — first notice symptoms such as shedding and patchy hair loss during their 20s or 30s. 

Alopecia universalis and male pattern baldness are both types of hair loss. However, they occur for different reasons, result in different symptoms and tend to require very different approaches to be treated successfully:

  • Alopecia universalis is caused by your immune system. Alopecia universalis occurs when your body’s internal immune response prevents your hair from being able to grow normally.

  • Male pattern baldness is caused by genes and hormones. Male pattern baldness is primarily caused by the effects of dihydrotestosterone (DHT), a hormone that can shrink hair follicles and shorten their natural growth cycle.

  • Alopecia universalis causes hair loss everywhere. If you have alopecia universalis, you might notice your hair growth stops everywhere, including on your face, beard area, torso and limbs.

  • Male pattern baldness causes a specific pattern of hair loss. Male pattern baldness doesn’t cause hair loss across your entire scalp. Instead, most men gradually develop a receding hairline, bald patch at the crown and other signs of balding.

  • Alopecia universalis occurs in men and women. Alopecia universalis doesn’t have a clear sex-related pattern. This type of hair loss can occur in men and women, with similar symptoms and severity of hair loss.

  • Male pattern baldness only occurs in men, but women can also have androgenetic alopecia. In women, pattern hair loss occurs differently, with diffuse thinning close to the part line being a more common symptom than hairline recession or a noticeable bald patch.

  • Treatments for alopecia universalis target the immune system. Most treatments for alopecia universalis work by restricting your natural immune system response, with little or no effect on your levels of hormones that can cause pattern hair loss.

  • Treatments for male pattern baldness primarily reduce DHT levels. Because male pattern baldness is caused by DHT, the most effective medications, such as finasteride, work by reducing DHT levels throughout your body. 

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Since alopecia universalis causes such extensive hair loss on the scalp, face and body, it’s often more challenging to treat than other types of alopecia areata.

There’s currently no cure for alopecia universalis. Having said that, several treatments are available to control your immune system, prevent widespread hair loss from becoming more severe and, in some cases, produce hair regrowth.

Currently, the most effective forms of treatment for alopecia universalis are topical and systemic steroids, immunosuppressive agents and Janus kinase (JAK) inhibitors.

Topical and Systemic Steroids

Steroids work by restricting activity in your immune system, which can often help to protect your hair follicles from damage. Your healthcare provider may prescribe a topical steroid you can apply to your scalp or an oral steroid you can take to control inflammation.

To stimulate hair growth and help you maintain a full head of hair, your healthcare provider may also provide injections of anti-inflammatory steroid medications, such as triamcinolone.

Systemic steroids can cause side effects, including acne, weight gain and moon facies (buildup of fat on the sides of your face). In women, steroids can also cause menstrual side effects, such as dysmenorrhea (menstrual cramping). 

If steroids aren’t effective, your healthcare provider may suggest using an immunosuppressive agent. This type of medication reduces your body's immune responses and may help limit loss of scalp hair, but it can affect your risk of contracting certain infections.

Other Medications for Alopecia Universalis

Recently, a new class of medications referred to as Janus kinase inhibitors have proven helpful for many people with alopecia universalis. 

These medications also target your immune system. However, they’re more selective than older medications for alopecia universalis and typically work by blocking specific messaging pathways involved in your body’s immune response.

JAK inhibitors used to treat alopecia universalis include tofacitinib (Xeljanz®), ruxolitinib (Jakafi®) and baricitinib (Olumiant®).

Although research on JAK inhibitors and alopecia universalis is limited, studies have found that JAK inhibitors work well for people with alopecia areata.

For example, in a recent systematic review and meta-analysis published in the journal Frontiers in Pharmacology, researchers concluded that oral JAK inhibitors were “efficacious and generally well tolerated” as treatments for alopecia areata.

If you have alopecia universalis, it’s important to work closely with your healthcare provider and follow their instructions, particularly regarding medication.

Although complete hair regrowth is rare, closely following your healthcare provider’s instructions can help you protect your hair follicles and stop alopecia universalis from getting worse.

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Since alopecia universalis often involves extensive hair loss, it can be difficult to deal with at a mental and emotional level.

If you’ve been diagnosed with alopecia universalis, making changes to your habits may make it easier to cope with your hair loss and maintain a high quality of life.

Some people with alopecia universalis opt to wear a wig. Wearing a wig might make it easier to maintain the appearance you’re used to, especially if you’ve recently started taking medication and need to wait several months to see if it’s effective.

If you feel anxious, stressed or depressed as a result of hair loss, participating in online therapy, talking to a psychiatry provider or taking part in an anonymous support group might help you to gain more control over your feelings and improve your mental well-being. 

Our guide to staying confident while losing your hair shares other techniques you can use to stay “yourself” while treating alopecia universalis. 

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Alopecia universalis is a severe form of alopecia areata. It can affect your scalp, face and body, which may make it difficult to hide your hair loss and maintain your normal appearance.

If you think you might have alopecia universalis, there are some things you’ll want to keep in mind: 

  • Alopecia universalis isn’t caused by DHT. This means most treatments for hair loss aren’t completely effective at limiting this type of hair loss or stimulating healthy hair growth.

  • Alopecia universalis is treatable. The earlier you seek treatment, the better your chances of maintaining your existing hair and potentially experiencing some regrowth of your scalp, face or body hair.

If you think you might have alopecia universalis, it’s important to talk to your healthcare provider or schedule an appointment with a dermatologist as soon as you can.

They’ll be able to examine your scalp, perform a biopsy and, if appropriate, suggest medication to help protect your hair from further damage.

Concerned about autoimmune hair loss? Our guide to autoimmune diseases that can cause hair loss goes into more detail about the link between your immune system and hair. And our guide to patchy hair loss shares more information about early signs of autoimmune alopecia.

8 Sources

  1. Alopecia universalis. (2023, February). Retrieved from https://rarediseases.info.nih.gov/diseases/614/alopecia-universalis
  2. Abbott, J. & Rapini, R.P. (2022, September 26). Totalis Alopecia. StatPearls. Retrieved from https://www.ncbi.nlm.nih.gov/books/NBK563225/
  3. Alopecia Areata. (2021, April). Retrieved from https://www.niams.nih.gov/health-topics/alopecia-areata
  4. Ho, C.H., Sood, T. & Zito, P.M. (2022, October 16). Androgenetic Alopecia. StatPearls. Retrieved from https://www.ncbi.nlm.nih.gov/books/NBK430924/
  5. Lepe, K. & Zito, P.M. (2022, August 25). Alopecia Areata. StatPearls. Retrieved from https://www.ncbi.nlm.nih.gov/books/NBK537000/
  6. Yan, D., et al. (2022). The efficacy and safety of JAK inhibitors for alopecia areata: A systematic review and meta-analysis of prospective studies. Frontiers in Pharmacology. 13, 950450. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9449963/
  7. ScienceDirect. (2019). Alopecia Universalis. Retrieved from https://www.sciencedirect.com/topics/immunology-and-microbiology/alopecia-universalis
  8. National Institute of Arthritis and Musculoskeletal and Skin Diseases. Alopecia Areata. Retrieved from https://www.niams.nih.gov/health-topics/alopecia-areata
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