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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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Replies to This Discussion
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Permalink Reply by IcarusAlopecia on
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Almost coming on 3 months.
Went to dermatologist and she was pleased with my growth, especially my eyebrows (full grown back in) and eyelashes (90% in).
We are on an appeal with insurance which is making me a little nervous but I'm hopeful as she's gotten it through before.
Update:
1. Growth on scalp slow and steady. (pictures attached)
2. Eyebrow and eyelashes major growth! So happy because it really brings back the balance of my eyes.
3. Still shedding but not as much. Still hairs on my pillow. I jokingly told my cleaning lady to start collecting them to make me a wig should I ever need it.
Symptoms:
1. No sinus, colds or anything like that.
2. Weight gain. It was just winter. I can't honestly say I didn't gain a little but I don't believe it has anything to do with Xeljanz. These 5lbs extra I'm carrying is purely winter weight. I can make a better assessment come May-June
3. Slight headaches but I'm also doing a high protein diet for the last few weeks. That could be it.
How I got the medicine:
Co-pay card. It got me 3 bottles. I'm on my last bottle :( 2 weeks left and will have to probably pay out of pocket until insurance approves.
Other Treatments:
Minoxidil 5% 2x a day (when I remember or can be bothered. Sometimes I rush out of the house and am like, eh, screw it)
Finasteride (propecia) daily
Biotin, men's multivitamin that I've always taken since before Alopecia
No specific diet. Hair be damned. I love my pizza, my wine, my occasional sweets. I'm not giving that up.
Exercise. I exercise 5x per week. Running or weights.
Cortisone shots: We skipped them this month to my disappointment. Reason being, while insurance looks over my case, we don't want them to say that the shots are what are solely creating growth.
Pictures:
Attached is a picture of my eyebrows/eyelashes. Really happy about this as it's tough to cover that up. I think in the summer I pencilled in a littttlllee bit of they eyebrow and friend lovingly made a joke about it. I never repeated that again! haha!
Back of scalp. Here is where the tough spots are. I had a HUGE bald streak which is getting smaller and smaller. I put a side by side so you can see the progress from Feb 20 to Mar 26. Big improvement.
Lastly, SMILE right now. Everyone! Alopecia is tough but we're all tougher. Do you, be you and be happy! Whatever and however!
Good luck my fellow Alopecia warriors! Update you in a month!
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Feb20.jpg, 144 KB -
eyebrows-lashes.jpg, 77 KB
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awesome progress. your eyebrows came back thick that's awesome.
thanks for the motivation also.
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Let's keep our fingers crossed something gets approved soon!You made my day!!
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that's very good news.
don't want to sound like the party pooper but phase 1 takes longer time before they reach and finish phase 4...
but the treatments are there at least. it's just a matter of time. thanks to all the scientist working on this.
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How long do you think the whole process takes?
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well that is a tough question... but based on my experience on Market Access in different pharmaceutical companies that I worked for, I would say at least 2,5 years. and that's optimistic.
look, from scratch meaning step 1 in laboratory a new drug takes around 15 years to reach the market.
the preclinical takes a lot of times, at least 3 years. this is when they test it on animals.
phase 1 takes in general 6 months to 1 year. would be good to see how much time it took in this case. phase 1 is done with healthy volunteers.
phase 2. this is when they test it with alopecians. another group also will receive placebo or another standard treatment... this phase takes 6 months to 2 years. this phase is usually where most new drug do not succeed.
phase 3. it's like phase 2 but done with much more patients so we have more data. hospitals are generally involved... adverse events are looked into very deeply. this step takes usually 2 years. sometimes even 3.
I assume you are in the USA. after phase 3 the company request the approval to the FDA.
phase 4 is post marketing. they will check the efficacy and secondary effects on the public.
The pros: in 2015, FDA listed Alopecia one of the 8 disease they will really focus on in order to get a treatment. that's good news and maybe a reason the whole thing will go faster. this is not a totally NEW DRUG. it is really similar to ruxolitinib, just a modified version of Jak 1 and Jak2. this should accelerate the whole process by a lot.
the downside: The idiot your country elected recently announced MAJOR cuts in clinical trials and research to support the increase budget of military. it's 2017 I can't believe tanks and weapons of mass destruction are more important than Health.
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Permalink Reply by Alo-mom on
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Thank you for your explanation of the process. NAAF has worked very hard to bring this condition to the attention of the FDA. I have written my thoughts on AW regarding the need for those with Alopecia or a love one that has it to call their representatives and tell them NO NO NO to cuts to medical research and to FULLY FUND THE NIH who doles out the federal monies for research. WE will do ourselves a huge dis- service if we sit there and do nothing regarding this very important issue. We really have sold ourselves short with someone in DC that really does not care about the health and welfare of our country. NO POLITICS BUT LETS MAKE THE CALLS or write an email to these representatives. Every day I make a call or write a note. They do not have to be long or complicated. Just call and say who you are and why you cannot accept cuts to medical research and to fully fund the National Institute of Health.
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Calling them won't help unfortunately. Govt doesn't care about people's interests. Look at any vote in house or congress they're basically always along party lines, its gross and really is taxation without representation.
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is vitiligo one of the 8 diseases
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don't know but I know some companies have vitiligo treatment in their pipeline. aclaris is one of them I think.
good luck buddy
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