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 Frida Rupert on
-
Newjack - I think that the stubble is good- it means it’s thickening up- the broken hairs may just be hair that started coming in later so is shorter- my hair is probably a bit thicker then before xeljanz (I hate saying this on here as I realise some people on here are struggling to get good regrowth) but I notice some shorter hairs around my face and hair line- but if anything they are making it look thicker. I think we are now super aware of our hair too- so what we might not have noticed prealopecia we now have our mental magnifying glasses on when it comes to analysing our hair growth/ scalp situation- mine is my scalp acne- had it since starting xeljanz- had it on my face toobut Retin A and salicylic acid creams knocked that out but on the scalp I still get it and I obsess over it- constantly checking it etc etc (which makes it worse cause touching and picking acne is a big no no- but I seem to do it subconsciously)- my husband gets so annoyed with me- he made me wear a beanie in the car on our recent road trip to stop me touching it...
This disease leave emotional scars- I totally understand your anxiety- maybe check out a few ways to reduce anxiety online etc- cause even if it is a valid physical manefestation of the alopecia- anxiety is only gonna make it worse. I’m preaching here just as much to myself btw:)
-
Permalink Reply by Rascalx2 on
-
great growth happy for you, i always hate when someone tells me “you look so much better with hair” its certainly not by choice.,, i always have that fear to lose it all again, it was so painful and so hopeless.. this site has really helped get me over some real rough spots! Im doing things now in the summer thinking back last year at this time i was AU.., i reallu feel that i dont have any problems in my life ,but being AU consumed every thought and was a problem everyday!!!
-
Permalink Reply by AnakinWildstar69 on
-
I'm surprised nobody has brought up epigenetics and Gene Editing methods of switching off the gene responsible for AA/AT/AU in the first place. hmm...either i'm way ahead of the game, or way behind? Xeljanz interferes with the mechanisms of this disorder, but it's not the 'root' of it, pun intended =P hmm.....
-
-
Personally I just don’t have a science background so I can read stats and literature reviews and understand some aspects of scientific studies but once it gets too chemistry/ biology dense I get lost. Would be great if somebody with an advanced knowledge of both chemistry and human biology could do some translation for us humanities folk. Right now xeljanz is already out there and in use- for those wanting a solution now it’s the best we have. I truely hope A better, cheaper,alternative comes soon. Do you have any info that might give some hope to non- responders AnakinWildstar69? If you can give us a rundown that would be amazing!
-
-
Hello Frida! Youtube "John Bergman-Gene And Gene Expression", and his related videos. HE NAILS IT. Also, research Epigenetics along with CRISPR-Cas9 method, which is very promising for auto-immune disorders!!!!! We just need funding and research. From what i've read, we've isolated the AA/AT/AU gene, so 2+2. I'm saying is, we can either reverse this auto-immune induced alopecia by silencing this particular gene expression, or, with CRISPR-Cas9, we can simply remove it/shut it off, or silence it there. I think mixing these two will definitely, 100% reverse auto-immune alopecia, and I'm just beginning to get involved with the epigenetics of auto immune alopecia technique. I'll check back with you all, soon ! ! !
ANAKIN WILDSTAR
-
-
Oh thanks for the lead Anakin Wildstar- I’ll definitely check it out and attempt to understand it (I’m cursing myself that I didn’t pay more attention to science in my formal education now that I have Alopecia). We really do need info on these new methods, especially for the non-responders or those who cant tolerate jaks.... the thing that frustrates me is that there seems to be a tier system for medical research - autoimmune disorders seem to be considered as a second or third tier issues ( this is just my opinion). With auto-immune problems exploding in numbers and causing so much grief - not just Alopecia but MS, Lupus, RA, thyroid issues etc etc - I think it’s coming to a point where some focus is now firmly on these conditions. I’m hopeful that the key to unlocking the “cure” is within reach soon- and availability re price and logistics allows it to be accessed by the masses. Thanks for keeping us informed. Im so grateful for xeljanz and jaks but I feel so heartbroken about people who have no access or are non responders - I really hope the solution comes soon.
-
-
Stunning lady! So very very happy for you. I’ve been thinking of you a lot since your shedding started - wanted to ask you how you were going but know when you are at a bad stage with Alopecia you kindof just want to forget and people asking questions can be confronting - but alas I was worried for nothing- you look amazing and that gorgeous hair is thick and healthy. Very happy!
ps. I was reading about people using activated charcoal as dry shampoo- supposedly less toxic. Wonder if that would work. I was a dry shampoo addict before Alopecia - haven’t touched it since (with hair this short washing it is so quick and easy) but when it’s longer might investigate alternatives - cause I did love that stuff. I think my Alopecia can be triggered by antibiotics though I need the “evil” trifecta for it is really hit- stress + infection+ antibiotics= catastrophe!!! It’s amazing how we’re all are the same but different...
-
-
I am trying to use less and less shampoo and more and more conditioner, as a man, I am wondering what shampoos and conditioners are OK for people with Alopecia and taking xeljanz.
My hair feels more course coming back in (wondering if thats because its thicker in some spots in others and it's layered???)
I'll take any reccomendations that help ease the scalp and make the hair feel a bit better.
-
-
Yup, I agree... mine (I think) was a trifecta of stress/allergic reaction/low iron.
Thank you for your kind words.
-
-
Katrina, you look amazing. Congratulations, it's reassuring and gives us hope, so thank you for sharing. I will be pulsing prednisone starting tomorrow. My Dr. wanted to follow Dr. Kings protocol with 300mg of Prednisone once a month. I'm a little afraid of how that's going to feel but at first she wanted to just up the xeljanz, when I started to cry she said she would prescribe the steroids. She also told me that she was Totalis when she was in high school and knows what it's like and that's why she chose this path. I do feel fortunate to finally have a doctor that can relate and is willing to let me decide my what's best for my body. Her hair came back on it's own, but she she doesn't have real eyebrows and very few eyelashes.
I have a farm and spend a lot of time outdoors in the sun and sometimes dust from the horses. I pretty much need a shower at the end of the day and always wash my head with cetaphil, a gentle cleanser, I wonder if that's doing any harm?
-
-
Carlie i just started 1200 mg in a month + 10 mg xeljanz
Katrina congrats you look awesome!! U were the first person that I saw your picture s and started with hope.
-
-
I doubt shampoo has has as much effect on alopecia as is being discussed, i think it is just the auto immune disease doing what an auto immune disease does.. I read people putting alot into their diet and effects of or not effects on alopecia,.. i did the auto immune protocol diet for a year and did not grow a single hair,. I think it is important to eat a healthy diet but i dont think having gluten in my meals or nightshades makes any difference in growing hair , losing hair, thicker hair. I see biotin is positive with xeljanz, but this damn alopecia effects everyone differently and may progress or may slow down . Wish it was as easy as using a brand if shampoo
© 2024 Created by Alopecia World.
Powered by
