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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 Rascalx2 on
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I had flu shot 2 weeks ago, i have spots all over back of my head, few weeks back i decreased dose of xeljanz, so i dont know if its from flu shot or decrease in dose. i went to derm other day who gave shots in spots to stimulate growth, also may be season change, who knows.. having spots is new normal for me, i get tired of freakin worrying about this anymore. Hopefully i never go back to au, i am staying on 15 mgs a day, i was not consistant w dose for few weeks, i do know if i stop taking xeljanz i will go back to au!
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Permalink Reply by Arsenalauba on
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So my spot in the neck is filling in. To you people that don’t know what has happened, I’ve gone from Jakavi to Xeljanz and start losing hair again. Got up to 20mg in the summer and it starts to fill in now. Still losing hair daily but I’m happy now.
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Congratulations arsenaluba. Why did you change ? And do you think xelijanz is more superior ?
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My doctors said that Jakavi was to expensive.. Jakavi was better and more effective but Xeljanz works for me now so I can’t complain.
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I always wondered which of them is better . As long as something is working for the condition, that’s what matter. Good luck !
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Thank you:)
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Permalink Reply by Fingers_Crossed on
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Hello everyone! I’ve been following this thread for YEARS! Thank you to everyone that has been sharing their experience. It has brought me so much hope. I finally started my xeljanz journey this past August and wanted to share my experience.
My history:
35 year old female
AA X 5 years followed by AU X 8 years (no hair anywhere except for eyelashes).
I have tried cortisone injections. I have taken oral steroids for 3-6 months on 4 different occasions and all my hair would grow back but every time I stopped, all the hair would just fall out.
I also did DCPC and had a severe allergic reaction with the first application.
I’ve spent thousands of dollars on homeopathy and vitamins and supplements and homeopathic remedies. I’ve tried paleo/auto-immune paleo/ gluten free/ dairy free / sugar free etc etc and none of these “natural” remedies have given me a single hair.
I took a break from any kind of treatment because I wanted to have children. And now I have 2 little ones so I started taking Xeljanz in August. I take 5mg twice a day (am/pm). I started seeing very little white hairs, (like in the sun with a magnifying mirror) within a couple weeks but it’s been slow since then. I have lots of fuzz and maybe 40% of that fuzz is starting to get some pigment but the hairs are super thin. I can only see them in the light very close up to the mirror. I have one patch on the back of my head that is a little thicker and darker. I have some fuzz on my eyebrows but it doesn’t seem to be changing into darker hair. So something is happening albeit very slow. I will post pictures as soon as you can see hair in the picture.
I had all the baseline bloodwork done including hepatitis and TB check. I also got the shingles vaccine before starting Xeljanz which delayed starting the meds by 2 months but I didn’t want to risk having to stop because of a shingles outbreak and then losing any hair I had grown. I get bloodwork done monthly and everything has been perfect. I will add I’m pretty healthy with a generally low carb diet. I avoid gluten and dairy not because of hair but because they don’t make me feel good. I also workout 3-5x week.
I live in Toronto, Canada and I see Dr. John Kraft from Lynde Dermatology in Markham.
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I am a 28 yr old male,live in Guelph and have had AU x 4 yrs, so great to see you are local to me. Nice to know Dr J Kraft is willing to prescribe Xelijanz. Are you getting it from Beacon pharmacy in India?
Thanks for your help
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Hi Mike! I am paying out of pocket for the medication and the cheapest pharmacy I could find was Costco for 1600$/bottle. I am trying to get some coverage thru insurance but it’s a convoluted process because you have to apply to a government program, get denied before you can even apply for coverage with private insurance which I’m not even sure they will approve it. Dr. Kraft Was pretty good with filling out the forms for me.
It is illegal to bring drugs into the Canada. You can’t order them online either. They will get confiscated at customs. I’m a registered nurse and I could lose my license with that kind of offence so I’m not willing to risk it. With that being said, you are allowed to have 90 days worth of medication that you have a prescription for on you when you come back into the country. So if it’s feasible you could get a mail box in the states and travel back and forth every few months.
Here is a link to Fedex- it does a good job of summarizing Canadian law and it also has a link to the Canada Food and Drug act which is a little bit more dense to read.https://www.fedex.com/en-ca/shipping-services/international/regulat...
Lynde dermatology is currently doing a clinical trial for a new Alopecia medication (not sure which one but I’m guessing Pfizer’s PF- 06651600). You could give them a call. The only reason I’m not participating is because I didn’t want to risk being on the placebo and delaying starting the meds any longer.
This is the contact info for Lynde dermatologist research trials:
http://www.cwlynde.com/research-trials/
This is the link to their study:
https://www.researchtrials.org/Active_Studies/Alopecia_Areata_Study...
If you scroll to the bottom of the page, there is a list of all the Canadian studies currently happening that you could potentially participate in just click on the Ontario link for locations.
Hope this helps you get your hands on some meds!! :)
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How did that work for you? How long have you been on it?
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