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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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Thanks for keeping us up to date, Frida. I think if everyone, even after they get their hair back, keep posting updates on the ups and downs, we a better way of beating this. Question I have, do you think the Beacon brand could be less quality or quantity? I have a supply of both, Beacon and from Darshana and I've been afraid to switch to just the Beacon. I would probably panic if I saw hair in my hands when I shampooed because that's when I really noticed a tremendous loss. I will never forget the handfuls of wet hair. The thought of it causes anxiety.
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Interesting, I've noticed more hair shedding in October right sftera medical procedure to fix an abscess .I wonder if that could cause an issue with xeljanz working less or my body being over active . I'm still fighting the issue to this day.
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hi newjack- I am very very sensitive to facial infection- I had a major blow out ear infection that ruptured my ear drum prior to the AU hitting, along with other stuff I mentioned in my post to Carlie so I think the abscess could be a factor BUT I think that taking the xeljanz and a bit of steriod injections or pulsing will mean it will ease up soon. I know you will not go AU again so hold on to that! Xx
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Hi Carlie, I think the quality is on par. I used both brands for ages now, and a third (unable to get unless you have someone on the ground)) but I definitely think this is stress related for me re work and dog passing so not related to meds. It was like clockwork- work tension all around then beautiful dog passed (she was 18, 16 years with me so quite an impact on my life) and then the work stuff bring up issues with my sons treatment (his diagnosis was something I went through just before the AU hit, so I think it’s a major emotional stressor) but so far very very minor. Absolutely no patches, still thick etc, just before I noticed absolutely no hair shedding - and now around 10 strands or so in the shower. That said there is a mega heatwave so it could be impacted by the crazy heat as well. I honestly do think it will resolve quickly and nothing like when it happened last time... so I think it’s meds still all good. We have heightened anxiety about it too givennour experiences so we also notice these things quickly.
Xx
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That's good to know. I live with stress, it's really not something I can avoid. But right before my AU, my husband was having an affair so we split up and then he was killed by his 22 year old son but we were still married so I had to deal with his other 2 ugly kids. Plus I was being treated for hypothyroid when I was actually hyper, so it was the perfect storm. My everyday stress is related to my job and training my horses, both can be difficult, I'm a Realtor and it's always something with the horses. The meds are doing the job, plus my thyroid is where it should be and with the help of a functional doctor, I think I am as healthy as I've ever been. Thank you for keeping us up to date!
xx
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Oh Carlie, what a horrible thing to go through. I am hoping from here on in you have some really good years. Stress, especially around work and jobs is so difficult to avoid, especially if it’s not your fault and there’s not much you can do to change it. So glad you are healthy now and growing those locks back xx
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Permalink Reply by Rascalx2 on
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Hey guys , so i had noticed that few weeks after getting kenalog injections maybe even a month later when the steroid would start to lose its effect, that hairs would start falling out , it seems in mh case their are spots that just dont hold up well, but it didnt go further then those spots. I guess what im trying to say is i learned to not worry because it didnt all fall out it was a little shedding then it slowed down, the xeljanz is contiuing to work, but i dont do kenalog injections because iit seems my system becomes more dependent on it. Still have a few spots that are bald but hairstylist is pretty good at cutting around and letting hair cover areas. I dont forget that i had AU and im still ecstatic to have eyebrows.
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I was getting Kenalog injections every 3 months before I started xeljanz but at about 10 weeks I would get this tingling sensation across my scalp and all the new fine hair would fall out. It might help kick start the growth if just starting xeljanz but it definitely will not work by itself.
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This is super tough. Try not to show her how freaked out you are. There are many understanding doctors out there but many are a pain in the behind and have no clue what impact this has on sufferers. If she only has spots there is a good chance it will resolve itself in 3-6 months, if it progresses the best treatment is toficitinib and steriod pulsing. If you read through this forum you will get lots of info, including info on how to get the meds with insurance, and hardship rograms in the States, or there are affordable options for purchasing overseas. Don’t freak out- this forum is the best place for info and support and all of us will help as much as possible to ensure she is ok.
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That's horrible, 15 years old is tough enough! It took me a year before I was able to find a doctor that knew what they were doing. Only after being on this forum and learning what I did, did I ask my regular dermatologist to prescribe xeljanz. He was unwilling but referred me to Dr. Jennifer Wu, at UCSF. She is a specialist who suffered from Alopecia Universalis when she was a teenager and the squaric acid treatment worked for her, although I don't think she ever got her eyelashes or eyebrows back but that was the reason she chose this as her specialty. It took about 4 months before I could see her so I was well into my second year of AU. If you could find someone who would be willing to inject steroids into the spots, I'm told that helps stop them from spreading. The sooner your daughter finds a doctor willing to treat you aggressively, the better off you'll be. Prayers for you and your daughter, there's nothing worse than seeing your children suffer.
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Thank you so much to you and everyone who responded to me. Full disclosure: I am a physician and so is my husband. I am shocked at how little dermatologists know about/understand this condition; it is quite frankly an outright embarrassment. Dr. Brett King refuses to see her, which I find bizarre. The fact that millions of people suffer from hair lost in general, and we do not have really good treatments for it, is honeslty unacceptable. When she first came into my room crying when she found 2 spots on top of her head, I knew immediately what it was. I had her in the next day to see a friend of mine who is a dermatologist and she injected them. However, what I do not understand is why she continues to have diffuse her loss. The spots are not getting bigger, but the hair loss continues. Is that alopecia areata? If so, the name is misleading…
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