I was on Xeljanz XR 11mg for several months in 2020/2021. From Aug - Dec, it worked to reduce the redness and inflammation on my scalp. My hair started growing back in December. It was amazing and I thought this was behind me. I had about 4 - 5 inches of growth in some areas, but then I felt 'different' in the beginning of June and it started to fall out. I had not stopped taking the Xeljanz, so I do not know why it stopped working. I had AA in 2004 and 2008, both of which resolved in after a year after steroid injections.
I have gotten worse since June of this year. Hair loss has been increasing and I am very sad. My doctor put me on barticitinib (Olumiant) but at 2mg. I took it for a month, got an infection (unrelated) and took a break for 2 weeks. Doctors think this is not AA but a scarring alopecia.
I have decided to take Xeljanz again. I have broken the 11mgXR in half and taken half at PM and will take half at AM.
Anyone have thoughts on this? Should I increase? I am also hopeful to order from Beacon the 5mg tablets.
Hello and yes even with Xeljanz hair can come and go. It can really work for a while and then it can fall out with little notice. The person I know that was taking it was up to 15 mg per day without any bad reactions, but the hair was not coming back with the old texture or with the length that would have not required her to wear wigs. After about a year or so she stopped taking it because it was just not giving her the long term results she wanted. It is a very powerful drug and can depress your immune system and leave you open to infections. I think this drug has a lot of potential and the drug company will offer it up free or reduced cost depending on your income. You have to work with a Doctor to get this to happen. We were lucky and had a doctor sign off for this drug company. Just my thoughts.
Thank you for your response. It makes me so sad that I am now in a worse state of hair loss than ever before. I thought this had come under control once I started seeing Xeljanz work.