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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 lusha22 on
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Bauer, yeah!!! So exciting! I just love our little forum family, and the excitement we have for each other, along with all the support!
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Permalink Reply by Steve on
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I am from the UK and today I went to visit my
GP about xeljanz or anything similar on the UK market. Unfortunately he had no clue what I was on about when I told him about all the trials and the improvements it has made to many. He prescribed me protopic ointment at 0.03% (astellas pharma). I have had numerous ointments like this and none work. I informed him this but he prescribed it anyway and I very reluctantly took it. However, he did refer me to a specialist dermotologist at the city hospital to talk about xeljanz and similar drugs further with them. Hopefully this appointment will be a lot better and I may actually get somewhere instead off ointments. This appointment can be a 8-12 week wait however. My UK xeljanz battle continues...
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Permalink Reply by AlopeciaDestroyedMyLife on
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You won't be able to get Xeljanz in the UK and no one can prescribe it because it was denied approval by the EU.
The only way the UK could approve Xeljanz is if the UK vote to leave the EU.
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I'm in the UK and every time I wanted to see a dermatologist it took 8 to 12 weeks. I could be waiting over 1 hour in the waiting rooms to get called to be seen. Only to be rushed and be seen for less the 5 minutes.
Last time I went to be seen I was told AU SUITS YOU!! And that they can't help me anymore because I'm not responding to what they give me.
I ended up not going back.
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That is also my fear, Sabri. One time with my GP he asked if it wasn't myself who was pulling my hair out!! I was like.. "ARE YOU FOR REAL?!". I am sadly not optimistic about the dermatologist as my experience has been the same as you - 5 minutes and you are rushed out. It is very disappointing when you have waited so long. Are you on any medication at the moment?
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Steve Im not taking anything for the last 5 years.
I used to get shots in my eyebrows. They did grow back but by the time my next appointment it wall all fall out again.
I had dcp which did not work and I think it's a load of crap.
I'm just saving up now and getting ready to buy xeljanz in Turkey. The price keeps dropping because of exchange rates. Was £395 now about £360.
I need to get a 10 month supply.
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Permalink Reply by LifeIsGood on
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Hello Everyone,
I just started Xeljanz on Septemeber 14 using the copay card, taking 5 mg twice daily. Felt no side effects from Xeljanz other than some slight burning/dryness in my eyes the first day or so, now all good. I'm excited to see and share in everyone's progress and questions.
I am AT/AU at the moment with AA since I was 13, 31 now. I've been following this forum for some time, thanks to everyone who is supporting one another out there!
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Congratulations LIG, best of luck! I look forward to hearing about your progress
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Ruxolitinib is better then xeljanz.
How dies the makers expect people to buy this. I'm sure the NHS will never give a prescription for alopecia at that price.
You will go bald thinking about the cost. Lol
The cost of ruxolitinib is £3600 for a 60-tablet pack of 15 mg or
20 mg tablets, or £1800 for a 60-tablet pack of 5 mg tablets (excluding VAT; British National Formulary [BNF] online, November 2012). This corresponds to an annual cost of approximately £43,200 per patient (assuming a 15 mg or 20 mg dose, taken twice daily, 30 days per month)
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Here I go again ranting about my no progress on xeljanz.In 3 days I will be starting my 6th month and nothing. No vellus hair on my head and still losing the little I have left.eyebrows were at about 40 percent when I started now on my left I got about 7 new hairs and the right I lost that same amount.A small amount of hair on my kneesI didn't have and if I hold my arm up in the light a few very short and sparse vellus hair.That is it feel a little sick in my stomach that I'm going to be the only one that won't get any hair.Anyone else not responding at all.How about the non responders who moved up to 3 pills a day any luck on that dosage?
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Right there with you - almost 6 months no growth at all. Had some growth on head, has all disappeared since. On 3 a day past 5 weeks.
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Hi Football fan. Don't give up. Definitely try 3 a day, I saw a big improvement when I upped to three. I also got cortisone shots and my doctor prescribed 400 mgs. of Plaquenil with the Zeljanz. I am going to check with the Pfizer pharmacy to make sure they will cover That dose, but I am pretty sure they will.
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