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 macdev on
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salut
ils sont 4 -inhibitors Jak (?):
Tofacitinib (Jak -1 / Jak -3)
Ruxolitinib (Jak 1 / Jak -2)
Baricitinib (Jak1 / Jak-2)
et
Oclacitinib (Jak1 et ....?)
À ma connaissance, ne tofacitinib ANF ruxolitinib testent pour AA, UA ...
Qu'en est-il des autres?
Oclacitinib est un médicament de breakthroug pour les allergies de chien et il est très bon marché / tofacitinib et ruxolitinib ...
Je ne l'ai pas trouvé quoi que ce soit sur les tests Oclacitinib dans humain
.... Peut-être une bonne direction ...?
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Permalink Reply by Bryster72 on
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I would also be interested in becoming FB friends....with both Jason and Bauer. Thanks
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Hi Bauer
My son Billy is turning 13 years old and has had full blown alopecia for the last 2 years. From the onset, he quit all sports, wears a knit cap 24 hours a day and even before the disease has always been pretty shy. He is pretty much now on emotional lock down. Only his 4 year old younger brother can consistently see him with his cap off :( We've seen a few positive steps, but the summers are obviously the hardest. The beach, swimming and everything warm is non existent. I'm sure many here can relate 110% - Therapy hasn't gone well because he doesn't open up. The good news is we met with Dr King for the second time yesterday and along with the progress here on the forum, we're very excited. Unfortunately the $25,000 a year is too much for us to afford but at least the distant future looks promising if it ever gets FDA approval. It sounds like 70-75% of the participants in the study has had success. It also sounds like the people who unfortunately haven't are those who have been without hair the longest. Can anyone speak to this? And with that with my son the fear is the longer he goes without hair, the chance that he won't respond to Xeljanz. I would love to be FB friends. I'm trying to have my son meet Kevin Bull, the Ninja warrior dude that suffers from UA. Can someone tell me please about how hard it is and the process necessary to get the Pfizer card if indeed we can come up with a financial solution... Thanks for sharing your story and keep us updated.
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Hi there Fenster! I'd love to be facebook friends and give ya as much help as I can, I'll send ya a message with my information. Hopefully we can help Billy out, but I definitely think that meeting someone else with alopecia can be a big help. For the first year or so bald I thought I was the only one with alopeica and it was devastating, until I realized I wasn't even the only one in my high school with it. It helps knowing that you are not alone. Meeting Kevin Bull sounds like a great idea. My mom used to show me pictures of Charlie Villanueva, an NBA basketball player, although I never got to meet him myself.
In regards to the copay card, Dr. King is unbelievebale and took care of everything related to the copay card! After my visit to Dr. King I received a phone call from the pharmacy he uses to confirm my insurance and personal information. Two days later I received the first bottle of Xeljanz at my door, and I only had to pay for the shipping! I may have even taken the day off from work to make sure I was there to sign for it. Oops.
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Hi Fenster,
I totally understand. I was diagnosed with AU at the age of 5 and am now 22. It was a really hard journey when I was younger, but I really dove into sports and academics as a way of keeping my mind and body in top shape, regardless of the disease. I never went to therapy, though it may have helped. I just had a really strong group of friends that didn't make me feel isolated. When I entered puberty, I did grow hair everywhere except my head, so I didn't look as different as others. Especially when I got into college, everyone just thought I shaved my head, though I was up front about having alopecia. I lost all my hair (eyebrows, eyelashes, facial, body) a bit more than a year ago. I know it's really hard at such a young age, and I think it would have helped me to meet others who had the same condition. All in all, I felt like alopecia made me really strong and confident, as well as more kind and empathetic to people. I got into top schools (Harvard, Stanford, etc.) for college and really think a part of that was due to my alopecia and how it motivated me. I know everyone's story is not the same, but that's my perspective. It is by no means a blessing, and I am here to address any questions you may have for someone who has had AU for a long time.
I am very interested in hearing that those in Dr. King's study who have not had success were the ones without hair the longest. I can speak to that: I have been on Xeljanz, two pills a day since early February and haven't had tons of success. I have had lots of vellus growth on my face and eyebrows, some of which is turning terminal, but my scalp is resisting. There is definitely some vellus growth and maybe a few terminal, really tiny hairs on my scalp. Do you know if those in Dr. King's study who have had AU for a long period were taking Xeljanz, 2 pills a day? I wonder if I should work with my derm to up the dosage, but I also think maybe I should stick with the current dosage for a few more months to document any other effects.
All in all, I really hope your son can come out of this stronger than he would be otherwise. If he ever wants to chat with someone a little older but who has had this condition, feel free to message me.
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Your reply was really kind and helpful. I would like more information on those who have went without hair for the longest too. That seems to represent the 20-30% that have shown resistance I think but can't say for sure. This is why I want my son to go on sooner vs later. He has been without hair for almost 3 years. As frustrating as it is for you, it's been 6 months on the meds. I will pray that you see better progress in 6 more months. We were overjoyed that Dr King was comfortable with my son going on the medication now vs having to wait 5 more years. Right now I be thrilled just getting his eyebrows and lashes back. Did you initially lose your hair, eyelashes and brows at 5 and then get it back at puberty or did I misread that? Thanks again and we will def keep in touch.
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I think it is great that your son has gotten approval from Dr. King - sounds like your son is healthy to begin this medication. I initially lost all my hair at (all over my body) at age 5/6, but then regrew it with treatment at age 8, and then lost it again at age 9, and then regrew in patches at 11, and then lost it all again at age 12. I stopped doing treatment and just naturally grew back my eyelashes, eyebrows, facial hair, and body hair at age 13 when I hit puberty, but have been bald on my head ever since. And then at age 20 lost everything again. The Xeljanz seems to be helping since I started taking it, but not much to any growth on my head and just more vellus growth than terminal everywhere else. I think waiting a little longer on the meds may help, but I will report back if anything changes!
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Thx for sharing. With meeting everyone here, it's crazy to me how the disease hit's everyone so differently. Hang in there!
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Hi Fenster. I have been on Xeljanz Since March and only have vellus on my scalp. Nothing anywhere else. I have only been AU for 8 months, was AA for two years before that. I also wonder if upping the dose would help. I know it is still early days, but many people are showing amazing results in the same amount of time and I have not had this condition for that long.
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Hey Starshine,
March seems pretty early (even though I started in February). I spoke to my derm and we are going to wait a few more months on my current dose to see if there are any more effects. I see vellus growth on my eyebrows a lot in the past few weeks, so I am hoping that turns terminal. I am not familiar enough with the science to know why others respond more quickly to the medication, especially since it seems like you have had AU for a long time.
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Hi Kasten, I know its early and I am probably being impatient, but I worry when I see how many other people have responded so well by this time. I do have tiny vellus over most of my scalp and one tiny terminal patch behind one ear, but absolutely no where else. I will see what my doctor says when I see him next month about increasing the dose, but I am reluctant as that means it will run out faster.
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