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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 mcoops1990 on
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Hey guys -
My name is Marc and I live in the San Francisco area. I have had AA since July 2018 and started going full AU in November. It's been a nightmare, as I'm sure you all know. I also have Ulcerative Colitis and was able to get my gastroenterologist to prescribe me Xeljanz, which I started taking in mid-November (he gave me a 2-month free sample). However, my Health Insurance (Health Net PPO) denied covering the medication and also denied my appeal as well. I will send in another appeal to my insurance, but I'm not sure if/when this will be resolved, and I need to get some more Xeljanz soon to continue treatment.
I have seen various people mention getting Xeljanz generics from Beacon, and I would like to do the same. I emailed them @ "beaconbdd@gmail.com" on Dec 24th and also filled out their contact form on the company website (https://www.beaconpharma.com.bd/quick-order), but never got a response from them. I also tried emailing "shamiul@beaconmedicare", but wasn't able to reach anyone at that address either.Since some of you guys seem to have been successful ordering from them, I was wondering what is the best way to contact them to place an order? Would anyone be able to walk me through the ordering and money transfer process?
Your help and insights would be greatly appreciated!
Thanks!
-Marc
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Permalink Reply by Rascalx2 on
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Dude that sucks! Ulcerative colitis is niw treated w xeljanz, when the hell will xeljanz be prescribed for alopecia as colitis and RA are?!
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This disease is heartbreaking! I am a slow responder and require a high dose to see any regrowth. After 3 YEARS on Xel I was almost ready to ditch the wig. I had full brows and long, thick lashes, and my hair was still thin, but not terrible. Then, my employer changed insurance companies so there was a gap of about 6 weeks in my medication. During that time, I lost everything...3 years worth Gone! That was in September and I am just now starting to see tiny hairs on my scalp if the light hits just right. Then after setting up the delivery of my medicine in plenty of time last month, the pharmacy let me know AFTER it was to be delivered that they needed a new script from my doctor. There was no mention of this when I set up delivery. This was on the Friday before Christmas so my doctor was unavailable to send the prescription until 2 days after Christmas. Then I set up delivery with the pharmacy 2 more times and the medicine just didn't show up on the promised days. The last time I called, I actually broke down and cried, begging for the medicine that my doctor ordered and my insurance approved but the pharmacy wouldn't follow through and deliver. I'm sure that the last delay set me back 2 or 3 more months! I'm thinking about getting a back up supply from Beacon so this doesn't happen again. The treatment I received from the pharmacy was criminal. No, I didn't die, but a part of me did! I feel broken all over again.
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So sorry to hear the frustration and delays , it is heqrtbreaking that the ins companies view this as no big deal because its not like we’re gonna die with hair loss... this seems to be the only disease that is just not taken seriously...it is riduculous that this drug works and is not a treatment for alopecia, hang in there !its great that you know it was working for you
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Good luck, Brock! I remember how nervous I was right before shaving my head, but I assure you it's much better than watching your hair fall out in clumps every time you wash your hair.
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Hi Merry,
I am so sorry. Buy from Beacon just to be sure.
How did you get Xeljanz approved by your insurance in a first place?
Thanks
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Hi Nat,
Can you (or anyone else on here) please explain to me how to order the generics through Beacon? I have sent them and their reps multiple emails trying to place an order and also filled out their website contact form, but haven't been able to get through to them. I'm running out of my free samples of Xeljanz and desperately need to get some more, since my insurance won't cover the medication (even though I got my Gastroenterologist to prescribe it for my UC).
Thanks
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Thanks for your response, Nat. I guess I'll just try again. Did you use the following contact form: https://www.beaconpharma.com.bd/quick-order/? Or did you reach out via email to "info@beaconpharma.com.bd"?
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