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.
No it was 300mg at one time. 6, 50mg pills. Once a month for 3 months.
Oh, wow! Thank you Carlie for your help! What dosage of Tofa are you taking now?
Hi Kevin, sorry I didn’t get back to you sooner. I think it’s exciting that you are moving to baricitinib, I suspect non responders or partial responders may do better on baricitinib, its very dependent on the individual as to what they can tolerate and what works. Keep us posted on how you go!
What is a normal dose to start on? 10 or 15mg ?
Hi guys. What’s the difference between 300 mg prednisone once a month over three consecutive days and once a month 300 mg all at once in steroid pulsing ?
Anyone here having side effects on 15-20mg or know anyone who is/was having stomach problems
Surprised how most people were ok on double dosage for along periods. I would have vomiting and nausea for days after a certain point and would need to always go down, then I would feel good.
A GI doc recently told me to take Pepcid for possible stomach acid.
I have been tested for any possible bacteria, nothing there
My blood work is mostly fine, I think my cholesterol went up a bit in the past year and a half (moreso when I was on double)
Does anyone else have experience stopping Xeljanz for a couple of weeks? I've been on it for 2018 and have had 100% regrowth but am having surgery next month and the doctor is requiring that I stop taking it, particularly for the recovery. Obviously, I'm pretty terrified that my hair will all fall out quite immediately. I'd love to hear any experiences. Thanks!
I had an universalis alopecie since 2 years and all my hair had regrowth with tofacitinib. I had stop it in mars becaise of coronavirus and i started to lost hair 6 weeks after so half of april. I have took tofacitinib again in june because i losted my hair more and more and it was visible. My hair stop to fall down in half of aout and today all my patch have little hair! Sorry for the english, i m french !
Your English is much better than my French, don't apologize! I'm so sorry that you had to begin again, how frustrating for you.
If you don't mind, please say what happened again with your hair loss and regrowth after stopping and restarting. You can type it in French because my little girl goes to the French school here so will be able to translate it for me. :)
Thank you for sharing your experience.
Contact Frida Rupert from this site. She stopped Xeljanz for a surgery for a couple of weeks.
I had surgery and stopped taking it for about 10 days from memory. What I did was lower the dose until about 3 days before surgery then stopped and then after 1 week, when incisions healed I amped up and took 20 mgs. I even considered taking a steroid pulse to stop any rebound inflammation causing a flare but in the end didn’t need to. I think as long as you start taking it within about 2 weeks you should be ok apart from a minor shed. I would consider a slightly higher dose maybe the first week you start taking it again, just to stabilise any inflammation and then drop to your usual dose. I think some studies have shown we have about 6 weeks of it being out of the system before the majority start to lose hair however their are exceptions and in particular I would say long term AU would be the most suspectible to an earlier hair loss episode. That said, once you do restart it should regrow any hair loss reasonably fast. Good luck with the surgery, I’m sure you’ll be fine and any loss will be minor and recoverable.
Please reply to me. On xeljanz were you abel to get your lower lashes back? Were they the last to come back? They seem the most stubborn in my case..