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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 Stacy-OC on
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Hi Rascalx2 and FootballFan...
Dr. Ko responded to me and said he's had patients that have fuzz at 6 months, and then months 7-10 of taking 20mg, it starts to grow. There's still hope. Saw Dr. Mesinkovska yesterday and she did say that Jakafi (the expensive one) works on Xeljanz non-responders, she actually opened a study in Feb. at UCI. I've had Alopecia for so long, I go bald 95% of the time - my husband, friends and kids are fantastic about it. I was my largest hurdle. I am so sorry you are a newbie, I would not want to go back to the years of AA or the beginning years of Alopecia, I have the utmost sympathy - but I will say if I had a do-over, I would not hide it. The years of untangling and coming "out of the closet" were beyond! I can also be on Xeljanz and go through this process and not feel like I'm holding onto this hair with the same desperation as I once lived. Good luck, I would stay on it for a year - you have fuzz! Oh, another note - I am dairy free, GF - I don't think it makes much of a difference. I had hair grow in when I was at my most unhealthiest (partying in HS and college) and fall out during happy and healthy times....we need to realize the predictability is it's unpredictable!
For Football, try to switch your JAK, you might be better attacking T1&T2, rather than T3.
Good luck to all, this disease is a crazy a** rollercoaster, but it has made me a better mom and being! So cliché, but true!!!
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awesome that Dr Mesinkovska said this. the issue is that ruxolitinib is so hard and expensive to get!
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Permalink Reply by dreamscometrue on
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I agree! There is something going on within that triggers the attack within the body itself. Could also be environmental which would be thought provoking!
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I have been on xeljanz for 8 months I have a good amount of hair on my head and eyelashes but no brows and still some bald spots on my head. My doctor is giving me 100 mg is prednisone once a month to try and fill it in, anyone else try this??
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Hi Cstarr I have RA and AU. My doctor gave me an IV of prednisole twice over 3 months and all hair grew back. Then all fell out when I went off it.
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I heard Ruxolitinib is cheaper in Turkey around $2000, but i am not sure. do you think we can buy powder in China and make it as pills. The powder is very cheap.$400/gram BTW, do you think the Barcibit will be cheaper than Ruxolitinib?
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It may be another year out...but it is coming. If it is on label use, it will be a much easier drug to have covered by insurance.
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CTP-543, or '543 for convenience, is the company's second wholly-owned product candidate which is being developed for the treatment of moderate to severe alopecia areata, which is a common autoimmune disorder affecting millions of people in the U.S. - it causes partial or widespread loss of hair on the scalp and/or body. This candidate was revealed recently and is a deuterium-modified analog of ruxolitinib, which is commercially available as Jakafi for the treatment of myelofibrosis and polycythemia vera.
Jakafi has been used to treat alopecia areata in investigator-sponsored trials and has shown to promote hair growth in patients with this condition. Concert has conducted pre-clinical studies which demonstrated that '543 retains Jakafi's selective JAK 1/2 inhibition profile and that it shows improved metabolic stability. I think these patients will be highly motivated to try a new treatment option, especially the female part of the patient population. '543 could be the first-in-class oral medicine for alopecia areata and I think it has blockbuster potential. I believe it could be priced lower than Jakafi but that the size of the patient population is more than enough for Concert to generate $500 million to $1 billion in annual sales in 2020's.
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Hi Cws, no I spoke to the Dr in charge of this trial and she told me it's gt past phase 1 and now they have started phase 2a then if successful will go to phase 2b and so on. But I asked how soon but she told me is usually takes a few years to come to market but maybe by 2020 if all goes well. But she did say other jak inhabitors are being investigated and might be out before Ctp-543. So fingers crossed. She did seem very positive on a treatment for alopecia
I also asked the price. But she would not answer that at this very moment as its too early days. But just to remind everyone again Tofacitnib ( xelanz) is going generic 2019/2020 meaning it will be very cheap ! So stay positive everyone! If xeljanz is working it might mean you need to fund it for the next 24 months (easier said than done I know) but then hopefully will become generic.
Kind regards
Singh
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Thank you for all this positive news!
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Permalink Reply by sadele on
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Thank you so much for writing this, I have been so down lately and I keep praying that a treatment that WORKS becomes available to us.
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That is great news!
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Not sure if that's to me or CWS but you's are welcome. Another thing to remember is that you also get 4 free boxes a year and 4 next year meaning you will only need to find 16 months again ( I know it's not that easy) but just keeping everyone positive and depending on how many boxes you need you will have to figure that out.
In my opinion we will have a treatment by atleast 2020.
Have a great day people
Kind regards
Singh
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