I have received a lot of interest from others on here in my involvement with the Xeljanz trials at Yale.
I thought it would be nice for everyone if I documented my progress on here.
Xeljanz is a Jak3 inhibitor and is believed to work with alopecia by turning off the distress signal relayed by the hair follicle to the attacking immune system which is the cause of the hairs falling out. Xeljanz comes in a strength of 5mg per pill and a full box contains 60 tablets. The recommended dosage for arthritis is 1 tablet in the morning and another in the evening each day.
The trial is set in a series of stages and there are requirements before participating. These include monthly visits and blood tests every 2 weeks. Dr Brett King is absolutely fantastic and is an inspiration to me. His positivity and enthusiasm gives me the much needed hope I have craved for over a decade. I have been put on a low dose to start with which is 1 tablet every other day. My dosage has now been increased to 1 tablet every day and next month it could be increased to 2 tablets per day depending on the results.
I have completed my first month and have already noticed my alopecia has stabilised . I have not lost any existing hairs. In addition to this I have seen little hairs growing in my chest area as well as eyebrows. Fingers crossed! To date, I have experienced no side effects.
Hey Nat, im AU, been on xeljanz 20mg a day, with that i keep my hair... if i decrease to 15mgs it strts to thin, start to get spots, but it doesnt happen for a few weeks. So, when Ive decreased ,I dont see the shed for about 3 weeks. I had derm give shots in spots which help but also went back up to 20 mgs a day. Ihave come to find that when I decrease dose it falls out.... Im also concerned about vaccinations for flu and when this covid vac comes out. Last year few weeks after flu shot i started to get spots all over. Im in health care and required to get flu shot
Hi Rascalx2, I have never been on 20mg. The highest dose for me was 16mg. I am trying to get down to 11mg due to the high cholesterol. How is your cholesterol level on 20mg? I have been on the reduced dose for more than 5 months. It's probably stress. Thank you!
Hi Nat, Although I cannot offer you any advice on what dosing to do because I myself am still struggling with that, I can say my cholesterol has been really bad while on xeljanz as well... Im 21, very active, and both of the 'bad' cholesterol levels get flagged very high every blood test I do. My doctor told me its more about the ratio of bad to good, and although they are high if your other 'good' cholesterol is okay you may be fine. Estrogen deficiency can also cause increases in cholesterol. Hope you figure out everything out with the spot!
Thank you Ariel! I appreciate all the help and support from the community on this website! I am trying the Prednisone pulse for now.
Hi Nat. Sorry to hear of your loss . Are you doing prednisone 300 mg once a months for three months then ?
I am trying a weekly pulse - 3days/week 50mg/per day. The next week - 40mg/day per 3 days and so on.
I am afraid to take 300mg at once.
Have you tried any other protocols?
I have tried 60 mg everyday for a week going down by 5 mg until I stop and it worked great , I was on that for 12 weeks then when I stopped I had a bit of hair loss on lashes and mustache and bit on the head hair but not much and after 2 months the shedding stopped and I started regrowing again but extremely slow on xelijanz alone . I m thinking the reason this happens is when you stop prednisone your cortisol is suppressed badly and takes a few weeks to start going back up again . I’m thinking now to do 100 mg for 3 days each months for three months . I think your protocol is not good for your adrenal glands because it’s high dose weekly where as once a month on three consecutive days would not suppress the adrenals completely and you wouldn’t need to tapper down and it also is a great infusion for your body to stop the inflammation
You are, probably, correct. I am afraid to take 100 mg at once. Based on my weight ( 60kg), the highest dose is 60 mg. I need to do more research. I found a medical study - they gave 30mg for 3 day/ week. They did it for 6 months. They had good results with no side effects.
I took Prednisone a few times before - every day starting from 60mg and going down over 3 months( similar to yours). It worked great but I had a moon face.
Thank you for your help!
Good luck, I think you are better off researching this . Let us know how you get on please
I will. Thank you!
When I asked my doctor to kick start the Xeljanz with prednisone she followed Dr. Kings protocol of 300 mg once a month for 3 months. My weight was 112 lbs. My hair took off and I felt no side affects.
Carlie, did you take 100mg at once per 3 days?
I took 50mg yesterday morning and could not sleep at night.