JAK inhibitors achieve significant regrowth in 30 to 50% of alopecia totalis patients, but documenting your starting point and tracking your response is essential for both medical decision-making and insurance coverage. Alopecia totalis (AT) and alopecia universalis (AU) represent the most extensive forms of alopecia areata, and their treatment requires careful, long-term monitoring to assess whether expensive therapies are producing results.
This article is for informational purposes only and does not constitute medical advice.
Alopecia Totalis vs. Alopecia Universalis
Understanding the distinction between these conditions is the first step in effective tracking.
Defining AT and AU
Alopecia totalis refers to complete or near-complete loss of all scalp hair. Alopecia universalis extends beyond the scalp to include loss of all body hair, including eyebrows, eyelashes, arm hair, leg hair, and pubic hair. Both are considered severe manifestations of alopecia areata, an autoimmune condition in which the immune system attacks hair follicles.
The SALT Score System
The Severity of Alopecia Tool (SALT) score is the standard measurement used in clinical practice and research. It quantifies the percentage of scalp hair loss on a scale of 0 to 100:
| SALT Score | Meaning |
|---|---|
| 0 | No hair loss |
| 1-24 | Up to 25% scalp hair loss |
| 25-49 | 25 to 49% loss |
| 50-74 | 50 to 74% loss |
| 75-99 | 75 to 99% loss |
| 100 | Complete scalp hair loss (alopecia totalis) |
Alopecia totalis corresponds to a SALT score of 100 or very close to it. This score is your baseline, and all treatment tracking measures improvement from this starting point.
Setting Up Your AT/AU Tracking Protocol
Step 1: Document Your Baseline
Even with complete hair loss, baseline documentation matters. Take photos from five standardized angles: directly overhead, front hairline view, back of head, left profile, and right profile. Note the complete absence of hair, any areas of partial vellus fuzz, and the condition of eyebrows and eyelashes if you have AU.
Record your baseline SALT score (likely 100 for AT) and upload your baseline photos to myhairline.ai/analyze to establish a starting density measurement. Even a reading of near-zero is valuable because it gives you an objective reference point.
Step 2: Establish Tracking Zones
Divide your scalp into zones for more granular tracking. Regrowth from JAK inhibitors often appears in specific areas first (commonly the occipital region and sides) before spreading to the vertex and frontal scalp. Tracking by zone lets you detect early response signals before whole-scalp measurements shift noticeably.
A practical zone system includes:
- Zone 1: Frontal hairline and temples
- Zone 2: Mid-scalp and vertex
- Zone 3: Parietal (sides)
- Zone 4: Occipital (back)
Step 3: Schedule Consistent Sessions
Photograph and measure every 4 weeks during active treatment. Use the same lighting, camera, and angles each time. For a broader overview of monitoring practices, see alopecia areata monitoring.
Tracking JAK Inhibitor Response
JAK inhibitors (baricitinib, ritlecitinib, tofacitinib) are currently the most effective treatments for severe alopecia areata including AT and AU.
Expected Response Timeline
Response to JAK inhibitors follows a general pattern, though individual variation is significant:
| Timeframe | Expected Changes |
|---|---|
| Weeks 4-8 | Possible early vellus hairs in some responders |
| Weeks 12-24 | Vellus hair becoming visible in responding zones |
| Weeks 24-36 | Vellus converting to terminal hair; density increasing |
| Weeks 36-52 | Cosmetically meaningful coverage in responders |
| 12+ months | Continued improvement possible; maximum response may take 18 months |
Not all patients respond. Approximately 30 to 50% of AT patients treated with JAK inhibitors achieve clinically meaningful regrowth. If no vellus hairs appear after 6 months of consistent treatment, discuss next steps with your prescribing physician.
What to Record at Each Session
At each 4-week tracking session, document:
- Photos from all five standardized angles
- AI density scans of each zone using myhairline.ai
- Estimated SALT score based on visual assessment
- Hair type observation: Is new growth vellus (fine, unpigmented) or terminal (thicker, pigmented)?
- Body hair status (if AU): Any eyebrow, eyelash, or body hair return?
- Side effects: Any symptoms to report to your physician
Recognizing Positive Response Signals
The earliest sign of response is the appearance of fine vellus hairs on previously bare scalp. These may be barely visible and require close inspection under good lighting. Over weeks, vellus hairs should thicken, lengthen, and develop pigment as they convert to terminal hairs. Your AI density measurements will begin reflecting these changes once hairs reach sufficient length and thickness.
Insurance Documentation for JAK Inhibitors
JAK inhibitors for alopecia areata cost upward of $50,000 per year without insurance. Most insurance companies require prior authorization, and your tracking data is a critical component of the approval process.
What Insurance Companies Require
The typical prior authorization for a JAK inhibitor requires documentation of severe alopecia areata (SALT score 50 or higher), failure of conventional treatments (topical and intralesional corticosteroids, topical immunotherapy), dated photographs showing disease severity, and a letter of medical necessity from the prescribing physician.
Building Your Documentation Package
Start a dedicated folder for insurance documentation from the day of diagnosis. Include your baseline SALT score and dated photographs, records of all previous treatments attempted and their outcomes, physician notes from each relevant appointment, and AI density data showing the objective severity of your condition. For detailed guidance on building an insurance package, see hair loss tracking for insurance preauthorization.
Ongoing Authorization
Many insurers require re-authorization every 6 to 12 months. Your ongoing tracking data demonstrates continued need and treatment response. A clear photo series showing progressive improvement from SALT 100 toward lower scores is the strongest evidence for continued authorization.
Tracking Beyond the Scalp
If you have alopecia universalis, track body hair regrowth as well. Eyebrow and eyelash regrowth are particularly important for quality of life and can be documented with close-up facial photos. Body hair (arms, legs) can be noted in your written log without requiring detailed photography.
When to Reassess Your Treatment Plan
If your SALT score has not improved after 6 months of consistent JAK inhibitor use, or if regrowth plateaus well short of your goals, bring your complete tracking record to your dermatologist for a treatment reassessment. Your data gives the physician a clear picture of exactly how much the medication has accomplished and whether a change in dose, medication, or approach is warranted.
Start Your Tracking Baseline
Whether you are about to start JAK inhibitor treatment or are already underway, establishing an objective baseline is the first step. Upload your current scalp photos to myhairline.ai/analyze to get density measurements across your scalp zones, and begin building the documentation that supports both your medical care and your insurance authorization.
This article is for informational purposes only and does not constitute medical advice. Alopecia totalis and universalis require diagnosis and management by a qualified dermatologist. Always consult your physician before starting or changing any treatment.