Alopecia World
www.alopeciaworld.com
Xeljanz (Tofacitinib Citrate): My experience on the trial
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.
-----------------------------
Related Post on Alopecia World:
Replies to This Discussion
-
Permalink Reply by TC on
-
Isn't Ruxo JAK 1 & 2 whereas berberine is JAK 3?
Resveratrol + Curcumin + Quercetin might be worth looking at.
-
-
I think it’s a Jak 2 inhibitor - “This beneficial effect could partially be attributed to the inhibition of NF-kB and the reduction in JAK2 phosphorylation (through the influence on the JAK/STAT pathway) by both 5-ASA and berberine“ though I think it also has influence on the Jak 3 pathway... that said I think the dose needs to be reasonably high for immune related therapy.... and I wouldn’t think it would really be near the strength of Ruxo so taking alongside Tofacitinib would probably be the only way to use it with success with AT or AU. No one seems to have had a “extremely successful” treatment result with it alone on forums and such but that could be attributed to either underdosing, inability to tolerate (gastro) and also lack of follow up. People tend to say they are taking it and than disappear and never follow up with results. Some of the documented studies are encouraging but none have focused on alopecia, but success in RA is promising as it seems alopecia seems to respond to many of the RA meds.
-
-
I saw my UCSF Dermatologist today, she's a specialist for alopecia and was AT when she was in high School. She was delighted and amazed with my growth. She even had the other doctor come in to see. She has only one patient that's had full regrowth on10mg but he's now having spots turn up, which she injects. She was telling me that even if she can get an insurance provider to cover the medication, it's still not enough and very difficult to get the 15mg what most of her patients need. She knows where my medication is coming from and she knows it's working but, I guess, she can't suggest it to her patients. I suggested that she have them seek some online support. I don't know if she will but it must be maddening for her, knowing there is an affordable solution but she can't tell them about it. It's such a sad shame.
-
-
Hi Carlie: are you saying that she has a patient who is on 10 mgs but is getting spots no that dose? And is she saying that most people new to be on 15 mgs in order to get regrowth?
is the affordable solution you are referring to xeljanz?
-
-
Oh Carlie,
so so very happy this is working out for you!!! And yes - it’s hard when options are available but most of the docs won’t or can’t tell this about this option we have now. I hope you are doing well and I love hearing this good news...And it reminds me why this forum is so important - when doctors can’t give affordable options it feels like we are the ones who have to try and help each other.
x
-
Permalink Reply by Rascalx2 on
-
Anyone go down to 15 mgs from 20 mgs and keep their hair? With the new warning out on xeljanz with the PE, my MD wnats me to go down to 15... i already have sporadic spots on 20 mgs.. anybody have experience with the decrease ? I know it will shed , just wonder if it stops ir just jeeps coming out, i just want to keep my eyebrows and facial hair, my hair is so thinned out throughout my head, sometimes i think im holding on to so little as it is, it has never come back to how thick it was before i lost it. I knew when i started taking xeljanz , I felt it was gonna be temporary to get the hair back.
-
-
Just want to say i love all you guys on here , and im with everyone of you and think of you all when I pray and meditate , i am truly humbled by the strength of all of you.
-
-
Hi Rascalx2. Do you think taking a blood thinner (even a natural one) would be enough to offset the risk? Also, and I know I may seem overly optimistic, but the study on xeljanz suggesting a heightened risk was on RA patients with at least one cardiovascular risk factors that had not responded to methotrexate. They were also over 50. I think it does raise risk to take a higher dose, but I also think many of us taking Tofacitinib are not in a high risk cardiovascular population. That said I do think any meds, the higher the dose the more potential for issues. I feel ok on 20 mgs, the study doesn’t make me feel too scared (famous last words- I hope not...) but I do think doctors may become more cautious with dosing. Most doctors already are weary of prescribing due to it not being approved for alopecia... so it will make it harder to get the dose needed for recovery. Do you have any cardio issues that you are aware of? Or is it just a blanket policy by the doc to lower everyone down?
i think those of us who have reoccurrences while on the meds, won’t go back to baseline on the meds, though there is a chance we will lose a bit of thickness, have patches that come and go, and our hair cycles will also be strange due to losing all at once and than regrowing it within the set period (ie, 3 months). I think reducing dose is a bit risky but will not mean you go back to how it was when you started.
-
-
Yeah thanks frida, i dont have any cardio issues , im pretty healthy, eat well, exercise regularly, MD suggested aspirin a day, i agree w what you’re saying, but its gonna be hard to get the 20 mgs, one MD suggested maybe 15mgs week,20 the next werk and alternate back and fourth. Time will tell,
-
-
Hello, it has been sometime sense my last comment/update.
Just under 2 years on xeljanz. I have had AU from the age of 5. I turn 48 sunday.
Over the last two years I have gained the most hair I have ever had. Mostly facial hair.
My dose has gone up and down on the last 2 years due to liver or cholesterol levels. The more I control my cholesterol the higher my ALT level goes. Then it flip flops. It looks to be a balancing act in my body between the two.
To lower cholesterol I take a lose dose 20 mg statin. For my liver a take milk thisle. I have started cortisol injections to help with new aa spots on my eyebrows.
My dose is back up to the max amount of 20 mg a day. My hair has begun to thicken and or return.
I hope this helps someone. I am still greatfull for xeljanz. Although i understand for me it is not as simple as taking a pill.
Any advice, feel free to share. Not good with DM. Picture to come
-
-
I've been on Xeljanz for my psoriatic arthritis for one year. I have been AA for about a decade. 11.5 mg once a day. It did not control my arthritis well enough on its own so added methotrexate 25 mgs a week 6 months in. Also had kenalog injections to stubborn areas 6 months in (I had tried these before xeljanz without success). I have 100% regrowth now. My hair is not quite as thick as it was originally but my doc expects that to resolve.
-
-
For people that had regrowth... did your hair come back white? How long did it take for it to regain pigment... if it did? Just curious because one of my spots had regrowth for like 3 1/2 months but I shave my head and it still looks like a spot because its white hairs. If I don’t shave for a day or two it is def. real hair and lots of it. Just wondering for those who had their hair come back white and then regain pigment what their timeline was.
Thanks
Disclaimer
Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.
© 2025 Created by Alopecia World.
Powered by
