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 Xeljanzmiracle on
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Katiegirl, you are already losing hair. Your eyebrow and eyelashes count. But I understand that you discontinued to have a family. That is more important than hair.
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Permalink Reply by katiegirl on
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Xejaniz miracle - my eyebrows and lashes never really grew back anyways. It was very brittle hair so when they fell out I wasn't surprised. but yes it does count. Thankfully I haven't noticed any thinning on my scalp hair or other parts of my body. I am hoping it stays that's way
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Katiegirl, that's GREAT news, considering it's been 6 months since u discontinued Xeljanz. Are u still taking biotin and rogaine for women?
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Congratulations Katrina!
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Permalink Reply by Rascalx2 on
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Any stomach issues with 20 mgs? I went up to 15 mgs and started to have diarhea. Did have stomach virus and hoping it is just residual from that.
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Nope, no stomach issues. Actually, I feel like my digestion has improved, but I think this is because I have been really trying to limit the foods that I am allergic to... I don't think it has anything to do with my Xeljanz.
If anyone is interested, these are other things I've tried over the last 6 months. I am not sure if any or all of them contributed to my regrowth, but maybe someone can relate?
- I'm taking Xeljanz (2-4 pills a day over the last 18 weeks)
- I'm reducing my intake of foods I am allergic to (mainly, wheat and rye. I do not have Celiacs, but these two grains showed up on my allergy testing), I was severely constipated, but I am not anymore. I also take Betine HCL with Pepsin to help with this issue, and occasionally I put ground flax seed in my smoothies.
- I use the TheraDome laser helmet every day
- I use women's minoxidil 5% twice a day
- I started eating meat again (was a vegetarian for 8 years). My ferritin serum (stored iron) increased from 22 ngs at the onset of my alopecia to 105 ngs. (normal range is 20-100)
- I try to hang upside down for a couple minutes each day and gently massage my scalp to increase blood flow to my follicles
- I use Nioxin shampoo and condition (I also put a little caster oil in the shampoo)
- I use L'emarie Intensive Energizing Scalp and Hair Growth Treatment a couple times a week
- I take extra strength Biotin every day
- I eat very healthy foods and try to exercise daily
And, if anyone is interested in the side effects I've had...
Mainly weight gain (10 lbs)
1 severe cold that lasted 8 days
Breakouts on my forehead and chin
Exhaustion/trouble sleeping
(And all my labs have been within normal limits)
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Permalink Reply by Suzie on
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So happy for your regrowth Katrina!
I am currently taking 2 pills a day (have only been on Xeljanz for 1 1/2 months).....for both my RA and AA. I also take numerous supplements as well: Multivitamin, Biotin, Vitamin C, Evening Primrose Oil, Viviscal Professional hair vitamin (just started taking this - recommendation from a professional at Hair Therapy for Women), flax seed oil, and she told me to use Igrow (laser hair treatment - every other day).
I just started the Igrow and Viviscal professional. I have several bald patches and my hair has thinned quite a bit. I found Bobbi from Hair Therapy for Women in Tampa, FL. I traveled there and she put in hair extensions to cover my bald patches. I am hopeful that my hair will not be damanged with these and that I won't have to wear these forever.
She also has been on a few other topicals. I will keep everyone posted on my progress as well.
I too, have experienced severe exhaustion (this is NOT me - even with my RA). I have to force myself to exercise after work and keep moving otherwise I just want to sit and get tired very easily. I know the RA makes you tired, but this is very exceptional!
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Dwhite. thank you SO MUCH for your faith based response and appreciation of my efforts to assist fellow sufferers. Why do u feel u won't qualify for the Hardship Program? Did you call them? Did you apply and they denied you? Don't assume you won't qualify. They have accepted people making up to $95,000 a year. They will take into account your mortgage and other bills, etc. Additionally, the new year is fast approaching and EVERYONE can get 4 months of FREE Xeljanz thru the co-pay card! You can apply for that online or by calling the Xeljanz co-pay card activation phone number. Don't give up Dwhite!
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Okay...I didn't realize that about the co-pay card. I will apply for it online.
Thank You!!!
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Great! In addition, call Xelsource and have them mail you the application for the Hardship Program. It's only comprised of two pages. One for you and one for doctor in L.A. to fill out. Take it with u to the doctor in January. They need to fill it out and fax to Xelsource. Because they have to agree to release your future medical records to Xelsource if requested. You mail in your form, along with your income info. I think I explained the insurance rejection part to you already. Call me if u have additional questions. I think u already have my number. If not, pm me. Wishing u all the best! Valeri
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Permalink Reply by Alo-mom on
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You can even download the Xelsource form from your computer. The phone center at Xelsource are then nicest people in the world. You can almost hear them rooting for us. Really easy fill out form. Also having the first page from your last years tax return moves the process along faster.
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Thank u Alo-Mom for helping out!
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