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.
-----------------------------
AW: Other discussions on Xeljanz / Tofacitinib
https://alopeciaworld.com/main/search/search?q=Tofacitinib
Replies to This Discussion
-
Permalink Reply by Carlie on
-
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
-
-
My growth was different on different locations. But my understanding is white hair growth is a beginning. Stronger terminal hair may replace them.
Can!t offer a certainty. But growth is a good sign.
-
-
Brock, my hair came back pure white , i grew in my goatee, and it looked kind of cool , and was welcomed after being AU, brows were pure white, it starts to darken, then contiues to get darker. Also for me , it didnt come in for a little while to cover front top of my head. So i had classic receding hairline look, was really thick before i lost it and didnt have any of that in the past. When i look at pics from 2 years ago , i look older then, all honesty, i was happy to have hair and was ecstatic that it was growing in.!! It was like a short buzz cut and i remeber saying to my wife that “if this is all i get back i will be happy with it” i have since got some spots that come and go, but its not AU, i never complain about a “bad “ haircut anymore. Hang in there, it still gonna keep coming in... i looked like mr clean w white eyebrows when it came in
© 2024 Created by Alopecia World.
Powered by
