Tofacitinib in Alopecia Totalis and Universalis: A Slow Taper is Worth Trying ... but Cautiously

Oral Tofacitinib for Alopecia Totalis and Unversalis: Some Dose Reduction May be Possible After Full Regrowth

I enjoyed reading a nice case report in the Journal of Cosmetic Dermatology of a 7 year old girl with alopecia totalis who had full regrowth with tofacitinib. Following attempts to reduce the dose, the patient experienced hair loss again.

The patient had a 3-year history of alopecia totalis (no scalp hair). She had failed to grow hair with use of oral steroids, oral cyclosporine, methotrexate, and PUVA for varying lengths of time. Oral tofacitinib 5 mg twice daily was started for her arthritis. Hair growth was noted at 12 weeks and full regrowth was noted at month 13.

The patient was then switched from tofacitinib 5 mg twice daily to once daily. She continued this dose for 5 months and then was reduced to 5 mg every other day. After four months on the every other day dosing she developed new patches of alopecia areata again and the dose was increased back to 5 mg daily. After a period of time she developed patches again and went back to 5 mg twice daily.

Comment

In some ways, this case report is not all that surprising. We know that children with refractory alopecia areata benefit from use of JAK inhibitors like tofacitinib.

What’s helpful for clinicians to take note in this case report is:

1) It is reasonable to taper very slowly once full regrowth occurs.

Once a patient has full regrowth and has maintained that kind of full regrowth for 3-5 months, it’s quite reasonable to give thought to tapering the dose. The key is to proceed very slowly and one might go 5 mg twice daily to 5 mg twice daily five days per week and 5 mg once daily on two days of the week. If everything is still growing well, one can reduce further - such as 5 mg once daily four days per week and twice daily 3 days of the week.

The decision to reduce and how quickly to reduce will be influenced by a number of factors including age, duration of prior alopecia, speed of regrowth, other autoimmune issues.

This child’s young age and history of RA is certainly going to mean a more cautious taper.

2) We can share the excitement of full growth but need to be cautious.

As physicians, it’s okay to share in the joy of regrowth. Patients and parents are happy and we can be too! But it’s important to always respect the one key principle of alopecia areata - it is unpredictable. One does not want to offer false promises that once regrowth has occurred it will stay like this forever. One needs to be aware that patches can form. While we do not want to take away the joy of the moment, we need to make sure that we don’t offer false promises.

We don’t say “you are cured”

We don’t say “it’s going to remain like this”

We hope that it will stay like this as many patients do retain their growth. But false promises are empty promises and undermine any relationship.

3) Periods of increasing the dose of tofacitinib may be needed.

I think it’s very reasonable to have periods of dose escalation and periods where the dose is reduced. If this becomes a too frequent event then staying on a higher dose long term is the way to go.

If one is asking if the dose should be increased more than once every 12 months, it’s probably an indication that the right dose has not been found.

4) Options for flares of new hair loss include increasing the dose back to a higher dose but also include steroid injections, topical steroids and topical tofacitinib, oral minoxidil and topical minoxidil.

If hair loss occurs in a child on tofacitinib, we have several options. If the hair loss involves a patch or two, one certainly can increase the dose of tofacitinib again and stay on the higher dose for 4-6 months before making any attempt to reduce it again. However, there are other options that do not involve increasing the dose of tofacitinib. These include use of steroid injections, use of topical steroids, use of topical tofacitinib, oral minoxidil and topical minoxidil.

Tofacitinib is expensive and some patients and families pay out of pocket. Each pill is around $ 25 CAD. So the decision to go up 2 pills per week to manage a flare translates into $ 2500 each year. It could be that the same outcome could be achieved by having the child periodically use a topical steroid on the patch rather than increasing the dose. This might cost just a fraction of what taking more and more tofacitinib pills would cost. There are also long term safety unknowns and so being on the lowest dose is quite reasonable.

5) We don’t know the long term side effects of JAK inhibitors. Aiming for the lowest dose is reasonable.

There has never been a child on a JAK inhibitor for 15, 20 or 25 years so we don’t know the long term side effects. It seems that the safety profile is overall quite good, but we do know that there is some discussion in rheumatoid arthritis that patients using JAK inhibitors might have a higher risk of heart disease and cancer than TNF inhibitors. These studies are needed and we’ll review this again soon in a few weeks.

REFERENCE

Sardana et al. Pertinent role of maintenance dose of oral tofacitinib in a child with alopecia totalis with a 2.5-year follow-up on low dose. J Cosmet Dermatol. 2022 Jan 8.

REFERENCE

Sardana et al. Pertinent role of maintenance dose of oral tofacitinib in a child with alopecia totalis with a 2.5-year follow-up on low dose. J Cosmet Dermatol. 2022 Jan 8.