I wanted to start a discussion for those of us who have tried Xeljanz but had no results. Many people on this forum seem to do very well, and it is extremely frustrating to be in what seems to be the minority of those who do not. As well, I would like to gather information about those of us who do not respond - the studies one reads focus on the positive results and make passing mention of the number of participants who do not respond, but to date I have not found any literature that explores any possible reasons for non-response.
I am AU for one year, and have been on 30 mgs of Xeljanz for 5 months, and I have not responded AT ALL - no vellus hairs, absolutely nothing. I have no other medical conditions, and am an otherwise very healthy 49 year old woman whose AU came out of nowhere and spread like wildfire. As a matter of possible interest, I seem to have hit menopause at exactly the same time as I developed AU, so I do wonder about hormones, but no doctor or study seems to make any link.
There are a few things I think it would be interesting to know from all of you:
1. Alopecia history
2. Treatments tried before Xeljanz
3. Experience on Xeljanz - dosage, length of treatment, complete non-response?
4. Plans for future treatments?
5. Other existing medical conditions?
6. Coping mechanisms
Thanks to all who respond - I think this could be very interesting.