There are three main forms of Alopecia with Alopecia Universalis being the rarest and the most severe kind. Caused by a genetic mutation of the chromosomes, this type of Alopecia is believed to be an autoimmune disorder. The condition can occur at any age and causes a total loss of hair on the scalp and body – including eyelashes and eyebrows – and can also damage nails. Whilst the hair does spontaneously grow back for some sufferers, even years after the onset of the condition, it cannot be predicted if or when this regrowth will occur.
There is currently no cure for Alopecia Universalis although a range of treatments have been explored, the most recent being the rheumatoid arthritis drug, Tofacitinib Citrate.
Ethan tried Xeljanz for over 5 months. Xeljanz was not covered by insurance but we approached the drug company and requested assistance for the medicine which was over $5000 per month. We did receive some assistance from the drug company. This condition was considered more cosmetic. After a few months, WE DID SEE HAIR GROWTH!!! Ethan’s classmate said “Ethan’s hair is growing back” – it was a great day. However, the concern with Xeljanz is that it tries to teach the Immune system to leave the hair alone and not attack it but in doing so, the Immune system, specifically the TH1 arm of the immune system becomes relaxed. The TH1 arm of the Immune system has the job of fighting Tuberculosis and Cancer so we were cautious about the pro and cons of long-term challenges. It also appeared that unless his Immune system reversed itself, that is, consider hair as a friend instead of a foe, we would continue to have Ethan on Xeljanz permanently which was concerning due to lowering his Immune system. His hair growth was sporadic and patchy so being bald was almost more attractive than having patchy hair. To our knowledge, there is another company that is creating a topical solution which acts like Xeljanz (JaK-Inhibitor) in Pennsylvania and it is being studied.
The topical solution would be fantastic as it would be spread over the scalp like Rogaine (Minoxidil) to help reduce inflammation and allow the hair to grow. And it would not be internal medicine which would lower his immune system. Hopefully in the upcoming years, this topical jak inhibitor will be available as a prescription. The only downside I could envision is one the hair comes in fully, the cream will be all over the hair (maybe they can make it clear like hair gel?) -Still, with hair, this would be a great problem to have.
I wanted to share some of the Yale case study using Xeljanz:
Results of the Yale University of Medicine Study Using Tofacitinib Citrate to Treat Alopecia Universalis
Scientists at America’s elite Yale University School of Medicine used the drug to treat a 25 year old patient who was referred to them for treatment of plaque psoriasis, a chronic immune-mediated skin disease, and the most common strain of psoriasis, which displays as inflamed, scaly skin.
However, his diagnosis of Alopecia Universalis – which had never been treated – was also noted by the medical team and they decided upon the tofacitinib citrate treatment in order to try to cure both conditions.
The unnamed patient was almost completely hairless when he started the treatment, with the only hair being within the psoriasis plaques on his scalp.
After taking an 8 month course of tofacitinib citrate which involved 10mg per day for two months, followed by 15mg of the drug per day for another three months, the treatment was deemed to be ‘mildly effective’ in treating the patient’s psoriasis, however, he saw amazing results in terms of hair regrowth.
The subject had completely regrown scalp hair, developed eyebrows, eyelashes and facial hair, armpit hair and other hair – the first hair the man had grown in seven years.
This Yale study is the first reported case of a successful, targeted treatment for the rare Alopecia Universalis condition.
The paper detailing the Yale study, “Killing Two Birds with One Stone: Oral Tofacitinib Reverses Alopecia Universalis in a Patient with Plaque Psoriasis” (ref: J Invest Dermatol. 2014 Dec;134(12):2988-2990. doi: 10.1038/jid.2014.260) was written by Brett A. King, M.D., assistant professor of dermatology at Yale University School of Medicine and his dermatologist colleague, Brittany G. Craiglow, M.D.
Dr. King explained, “The results are exactly what we hoped for. This is a huge step forward in the treatment of patients with this condition. While it’s one case, we anticipated the successful treatment of this man based on our current understanding of the disease and the drug. We believe the same results will be duplicated in other patients, and we plan to try.”
He concluded, “There are no good options for long-term treatment of alopecia universalis. The best available science suggested this might work, and it has.”
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