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PubMed This is a summary of 17 peer-reviewed journal articles Updated
Dermatology

Building Your Care Team and Preparing for Your Visit

At a Glance

Building an effective care team for Alopecia Universalis (AU) requires finding a dermatologist experienced in prescribing JAK inhibitors. Your team may also include an endocrinologist and a therapist. Be prepared for baseline blood work and a prior authorization process for insurance.

Because Alopecia Universalis (AU) is more than just a skin condition, your care requires a team approach. Finding the right specialist—a dermatologist who is deeply familiar with the “new era” of systemic treatments—is the first and most important step in managing your diagnosis [1][2].

Building Your Care Team

While your dermatologist is the “quarterback” of your team, you may benefit from other specialists to manage the systemic nature of the disease:

  • Dermatologist: Look for one who specializes in alopecia or “hair disorders.” They will manage your diagnosis and prescribe advanced therapies like JAK inhibitors [2][3].
  • Endocrinologist: Since AU is frequently linked to thyroid disorders (like Hashimoto’s), an endocrinologist can help monitor your hormone levels and thyroid health [4][5].
  • Mental Health Professional: The psychological shock of AU is profound. A therapist or counselor can provide the tools needed to navigate the social and emotional impact of total hair loss [6][7].

Preparing for Your First Appointment

Your first visit is a fact-finding mission. To make the most of it, you should bring “physical artifacts” that help the doctor understand your unique case [8][9]:

  1. The Timeline: Write down exactly when your hair loss began, how quickly it moved from patches to total loss, and if you have ever had periods of regrowth [8].
  2. Treatment History: List every cream, injection, or pill you have tried, including how long you used them and if they helped at all [10].
  3. Family History: Note any relatives with autoimmune diseases like vitiligo, lupus, or rheumatoid arthritis [11][12].

Vetting Your Doctor’s Expertise

Not all dermatologists have extensive experience with the latest AU treatments. To ensure you are in the right hands, you can ask specific questions during your consultation:

  • “How many patients with Alopecia Universalis are you currently treating?”
  • “What is your protocol for prescribing and monitoring JAK inhibitors?”
  • “How do you use the SALT score (Severity of Alopecia Tool) to measure my progress?” [13][14]

Baseline Lab Work: What to Expect

Before you can start a systemic treatment like a JAK inhibitor, your doctor will need a “baseline” of your health to ensure the medication is safe for you [15][3]:

  • Screening for Infections: You will likely be tested for Tuberculosis (TB) and Hepatitis B/C, as these drugs can sometimes reactivate “sleeping” infections [15][16].
  • Lipid Panel: To check your cholesterol levels [17].
  • CBC and CMP: Complete blood counts and metabolic panels to check your liver and kidney function [3][17].
  • Thyroid Panel: To screen for common related autoimmune thyroid issues [4].

Navigating Insurance and Prior Authorization

It is important to know that newer medications like JAK inhibitors are expensive. Be prepared that your doctor will likely need to submit a Prior Authorization to your insurance company. This process can take weeks, and sometimes requires an initial denial and an appeal before the drug is approved. Be proactive: ask your doctor about “patient assistance programs” or co-pay cards offered by the drug manufacturers, which can significantly reduce your out-of-pocket costs.

Common questions in this guide

What kind of doctor treats Alopecia Universalis?
A dermatologist who specializes in hair disorders is usually the primary doctor for Alopecia Universalis. They will manage your diagnosis, prescribe advanced systemic therapies like JAK inhibitors, and help coordinate care with other specialists.
What other specialists should be on my Alopecia Universalis care team?
In addition to a dermatologist, you may benefit from seeing an endocrinologist to monitor your thyroid and hormone levels. A mental health professional is also highly recommended to help you navigate the significant emotional impact of total hair loss.
What lab tests are needed before starting JAK inhibitors for alopecia?
Before starting a systemic treatment like a JAK inhibitor, doctors typically order baseline blood work to ensure the drug is safe for you. This includes screening for tuberculosis and hepatitis, as well as checking your lipid levels, complete blood counts, and thyroid function.
How do doctors measure progress when treating Alopecia Universalis?
Dermatologists often use the Severity of Alopecia Tool (SALT score) to track your hair loss progress. This standardized scoring system helps your doctor measure the exact extent of hair loss and evaluate how well your current treatment plan is working over time.
Will my insurance cover JAK inhibitors for Alopecia Universalis?
Because newer treatments like JAK inhibitors are expensive, your doctor will likely need to submit a prior authorization to your insurance company. If initially denied, your doctor can submit an appeal, and you can also explore patient assistance programs offered by drug manufacturers to reduce costs.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.What percentage of your practice is dedicated to treating severe alopecia, and how many patients do you currently have on JAK inhibitors?
  2. 2.Do you use the SALT score to track my progress, and what specific SALT score would we aim for before considering a treatment successful?
  3. 3.What is your protocol for baseline and periodic blood monitoring once I start a systemic treatment?
  4. 4.Do you collaborate with a specific multidisciplinary team (like endocrinologists or psychologists) for the systemic side of this condition?
  5. 5.If my insurance denies a JAK inhibitor, what is your process for managing the appeals or accessing patient assistance programs?

Questions For You

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References

References (17)
  1. 1

    Tofacitinib for the treatment of severe alopecia areata and variants: A study of 90 patients.

    Liu LY, Craiglow BG, Dai F, King BA

    Journal of the American Academy of Dermatology 2017; (76(1)):22-28 doi:10.1016/j.jaad.2016.09.007.

    PMID: 27816293
  2. 2

    Ritlecitinib: First Approval.

    Blair HA

    Drugs 2023; (83(14)):1315-1321 doi:10.1007/s40265-023-01928-y.

    PMID: 37556041
  3. 3

    Janus kinase inhibitors for the use of alopecia areata: A promising therapeutic of the future.

    Updyke KM

    Dermatologic therapy 2018; (31(1)) doi:10.1111/dth.12556.

    PMID: 29124830
  4. 4

    Alopecia Universalis Associated with Hyperthyroidism Treated with Azathioprine and Hydroxychloroquine: A Case Report.

    Paudel V, Chudal D, Pradhan MB, et al.

    JNMA; journal of the Nepal Medical Association 2021; (59(241)):935-937 doi:10.31729/jnma.5830.

    PMID: 35199735
  5. 5

    Alopecia areata: descriptive analysis in a Brazilian sample.

    Lopes ASA, Santos LDN, Razé MC, Lazzarini R

    Anais brasileiros de dermatologia 2022; (97(5)):654-656 doi:10.1016/j.abd.2021.04.016.

    PMID: 35879180
  6. 6

    Alopecia areata: a review of disease pathogenesis.

    Rajabi F, Drake LA, Senna MM, Rezaei N

    The British journal of dermatology 2018; (179(5)):1033-1048 doi:10.1111/bjd.16808.

    PMID: 29791718
  7. 7

    An excellent response to tofacitinib in a Brazilian adolescent patient with alopecia areata: A case report and a review of the literature.

    Berbert Ferreira R, Ferreira SB, Scheinberg MA

    Clinical case reports 2019; (7(12)):2539-2542 doi:10.1002/ccr3.2484.

    PMID: 31893096
  8. 8

    Effectiveness and Predictive Factors of Response to Tofacitinib Therapy in 125 Patients with Alopecia Areata: A Single-centre Real-world Retrospective Study.

    Huang J, Qian P, Tang Y, et al.

    Acta dermato-venereologica 2023; (103()):adv12425 doi:10.2340/actadv.v103.12425.

    PMID: 38112208
  9. 9

    Tofacitinib (Selective Janus Kinase Inhibitor 1 and 3): A Promising Therapy for the Treatment of Alopecia Areata: A Case Report of Six Patients.

    Shivanna CB, Shenoy C, Priya RA

    International journal of trichology 2018; (10(3)):103-107 doi:10.4103/ijt.ijt_21_18.

    PMID: 30034188
  10. 10

    Alopecia Universalis in a Multiple Sclerosis Patient After Switching From Rituximab to Ocrelizumab: A Case Report.

    Mahyad M, Baghaei M, Baghaei A, Nahayati M

    International journal of rheumatic diseases 2024; (27(12)):e70028 doi:10.1111/1756-185X.70028.

    PMID: 39716030
  11. 11

    Patients with alopecia areata are at risk of endothelial dysfunction: results of a case-control study.

    Waśkiel-Burnat A, Kotowska M, Dorobek W, et al.

    Clinical and experimental dermatology 2022; (47(8)):1517-1522 doi:10.1111/ced.15206.

    PMID: 35357040
  12. 12

    Comparison of Current International Guidelines for the Management of Alopecia Areata-Comprehensive Review.

    Kropidłowska J, Kvinen A, Lewandowski M, et al.

    International journal of molecular sciences 2025; (26(17)) doi:10.3390/ijms26178632.

    PMID: 40943550
  13. 13

    Efficacy of Janus Kinase Inhibitors in Alopecia in Jordanian Patients: A Retrospective Cohort Study.

    Aldebei A, Hammouri YS, Abdallat SA, et al.

    Cureus 2025; (17(5)):e84321 doi:10.7759/cureus.84321.

    PMID: 40530228
  14. 14

    Exploring Janus kinase inhibitors for alopecia areata: a comprehensive review.

    Bushwereb R, Srivastava G

    Italian journal of dermatology and venereology 2024; (159(4)):380-389 doi:10.23736/S2784-8671.24.07894-0.

    PMID: 38780910
  15. 15

    Screening for latent infectious disease in patients with alopecia areata before initiating JAK inhibitors therapy: a single-center real-world retrospective study.

    Huang J, Tan Z, Tang Y, Shi W

    Frontiers in medicine 2023; (10()):1287139 doi:10.3389/fmed.2023.1287139.

    PMID: 37920596
  16. 16

    Suspected Herpes Zoster-associated Encephalitis during Treatment with Oral Tofacitinib in Alopecia Universalis.

    Hosking AM, Juhász M, Mesinkovska NA

    International journal of trichology 2018; (10(6)):286-288 doi:10.4103/ijt.ijt_87_18.

    PMID: 30783338
  17. 17

    Baricitinib as the first systemic treatment for severe alopecia areata.

    Kincaid CM, Arnold JD, Mesinkovska NA

    Expert review of clinical immunology 2023; (19(6)):565-573 doi:10.1080/1744666X.2023.2200166.

    PMID: 37042112

This page provides educational information on building a care team for Alopecia Universalis. It is for informational purposes only and does not replace professional medical advice. Always consult your healthcare provider about your specific situation and treatment options.

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