Alopecia World
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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.
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AW: Other discussions on Xeljanz / Tofacitinib
https://alopeciaworld.com/main/search/search?q=Tofacitinib
Replies to This Discussion
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Permalink Reply by Carlie on
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I am 68 years old. I was universalis. All of my hair fell out, including eyelashes and eyebrows. I lived like this for 1 year before insisting on someone referring me to a dr. that could help me try xeljanz. After another 3 months waiting for my appointment with a UCSF specialist, I started on 10 mg of xeljanz. I tried this therapy for 5 months with nothing. I asked my Dr, for a steroid bump and she prescribed prednisone, 300mg once a month for 3 months. I also increased my dose of xeljanz to 20mg. That was December of 2018. Everything I've learned has come from this forum and without this forum I would probably still be hairless. I'm posting pictures of my progress, up to about 8 weeks ago. I did go through a slight shedding in November when I tried cutting my dose to 10 mg but all is well again. I have felt great, I've had 2 minor surgeries without stopping the xeljanz without any problems. I have been exposed to the flu and bad colds without getting sick. Actually, I feel even better on the medication. I will send another block of pictures in another reply.
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Dec 2 2018.jpg, 1.4 MB -
12-9-2018.jpg, 1.1 MB
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12-20-2018.jpg, 902 KB
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There's a little more of a gap between pictures. It seemed like once the hair started coming in it was fast and thick.
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1-20-2019.jpg, 741 KB
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5-31-2019.jpg, 1.4 MB
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8-5-2019.jpg, 1 MB
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This is the last picture I took after having my hair cut and colored.
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8-7-2019.jpg, 4 MB
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Your hair is beautiful!Are you still on 20mg?
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Thank you, as it gets longer it feels very fine and thin. I probably need to keep cutting it for a while until it gets stronger. Yes, I'm still on 20 mg but I am taking the generic and 20 is more equivalent to 16.5.
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Carlie. Very very well done you ! Your hair is absolutely gorgeous. What an absolute pleasure to read your post. ! I lost my hair 12 years ago when I was 39 and there was absolutely nothing online re treatment for alopecia. It’s been so heartening to hear of the ongoing trials and off label treatments folk( including me ) are having to resort to. I’ve been on 15 mg xeljanz from beacon for 3 months with very faint growth on my brows and almost imperceptible Vellus on my head- I am convinced that I can see one terminal hair above my lip however. Lol. You have given me hope. Enjoy every minute of your gorgeous hair and I hope you are doing all the things that you may have held back from when you didn’t have hair
all the best x
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Permalink Reply by Fingers_Crossed on
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Very happy for you Carlie! Your hair looks amazing! You must be feeling so good. Thank you for sharing. Gives me hope :)
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Oh Carlie - this makes me so happy! It has come back beautifully! So thick and the colour is amazing. It’s hard to think back on the process- I know when we lose our hair it’s like a surreal nightmare, like the shock of it happening- no one can understand that numb feeling of confusion and fear. And then now, I know for me, I look back and I almost feel that recovering is surreal too- but of course in a much nicer way. I, like you, feel healthier on the medication then off. My blood results are fantastic apart from some iron dips here and there. Long standing nausea from before using these meds (as in a long period even before the alopecia hit - all through my twenties) no longer plagues me and I really believe the Tofacitinib is treating other immune imbalances in my case too.
Its so great the documentation of your progress. I am really kicking myself now that I didn’t take more photos - I felt so traumatised looking at myself without hair I would delete them almost immediately, but to see the progress -omg - amazing!
im just so overjoyed at your result! Hoping more and more alooecians can get the treatment they need (either Tofacitinib or something new) so that they can feel themselves again.
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Thank you Frida, and as I said before, if it wasn't for this site I might not have hair today. I learned more from all of you, especially you, than any doctor could offer. Infact, most of my doctors had no idea. My hair is far from where it was before the loss and I have had it colored. I'm in the process of growing it a little longer with trims in between to try to get it thicker, so it's really ugly right now. One nice thing is I now where my wigs when I don't feel like doing my hair and stressing it out. It's been a difficult journey and I still worry about it so I am extra careful. I had some shedding back in September, I think it was a result of coloring, cutting and trying to reduce my dose of tofacitinib. It was scary, but it stopped and now I'm being careful. I too, deleted the pictures of my baldness, I was afraid I would lose my phone and someone would find it and see them. I didn't let anyone see me without hair, not even my mother or sister. I didn't want them to have that picture in their mind, I know that sounds so vain and I'm really not. I plan on taking this medication for the rest of my coherent life, I never want to feel that insecurity and hopeless feeling, ever again.
To all of you out there who are struggling to find help, I urge you to be assertive. Tell your doctors to check out the Dr. King protocol and at least give it a try and if they don't then find another doctor that will! It took me a year, an agonizing year of wondering if I would ever feel like myself again before I was able to convince one of my doctors to refer me to someone who understood what I was asking for. Good luck and God Bless.
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Amazing results charlie. Congratulations ! So from December 2018 you increased the dose and started prednisone ? And did your eyelashes and brows come back nicely too?
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Yes, my eyebrows and lashes are back to normal. As you can see in the pictures, the growth from Dec to Feb was amazing. Maybe has something to do with the prednisone pulse.
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