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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 Carlie on
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Thanks Tori, I didn't see this until now but when I said I wanted to order they sent me an invoice that made no sense. I continued inquiring and did receive this from an Aspar rep:
You have received a reply from Hardik Akbari, Aspar Pharmaceuticals regarding Tofacitinib Tablets, Finished Product, Non prescription
Message Brand: Xeljanz 5mg Tablet
Drug Name: Tofacitinib 5mg
Company: Pfizer LTD
Packing: 60 Tablets
Price: $380 per pack of 60 Tablets.
Brand : Tofaxen 5 Tablet
Drug Name : Tofacitinib 5mg tablet
Company : Everest Pharma
Packing : 60 Tablets
Price : $58 for one pack of 60 tablets
Mode of payment : Wire Transfer / WesternUnion / MoneyGram / Paypal.
Mode Of Shipping : EMS / RMS / UPS / DHL
Contact : aspar.pharmaceuticals@gmail.com
WhatsApp / Viber / WeChat / IMO / Telegram / iMessage : +918000458539Reply to this Message Regards, Hardik Akbari Aspar Pharmaceuticals, G-1, Vidhi Palace A, Surat - 395004, Gujarat, India +91-8xxxxxxxxx ixxxxxxxxxx@gmail.com https://www.asparpharmaceuticals.in/ Click here to verify yourself and see details. Original Requirements Product Name : Tofacitinib Tablets, Finished Product, Non prescription Approximate Order Value : 5 USD Description : I would be interested in the generic version.
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Hello Canadians,
I have three unopened bottles of Xeljanz (I stopped treatment as I didn't respond) that I would be willing to mail to anyone in Canada whose tofacitinib supply is uncertain at the moment. I would hate for the meds to go to waste...
I don't want to mail them outside of Canada as they will be stopped at customs. If anyone is interested please send me a message!
Anna
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Has anyone ever taken xelijanz 3 times a day as opposed to twice per day? I’m thinking to take it three times a day as I heard the pills life is about 6 hours. Any thoughts would be much appreciated
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Never thought of doing this but it seems to make sense. Even to split the intake over 7 hour periods. I may experiment with this myself and gauge the result. Currently on 2.5 pills per day. Could do 1 pill morning , 0.5 pill afternoon and 1 pill night b4 bed. Im on generic xeljanz for the last 10 months and have had a good result (albeit not perfect hair but nearly) 70% regrowth. This regime change may push the result to closer to 100%
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I tried that for about 3 days last week, setting my phone alarm and taking 1 pill every 8 hours. That would have been reducing for me from 20 to 15, but then I read a post from Nicole T about her attempt to reduce her dose and it scared me so I decided to drop 1 pill a week, every Monday pm.
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Permalink Reply by Jcortez05 on
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For those of you that regrew hair with xeljanz when did the pigment come back ? This is my 2nd time on it but 13 weeks in and no pigment just a lot of fine white hair all over my head
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Hi Jcortez,
mine took a few months to get pigment. I remember it felt like a really long time to go from white fuzz to normal thick coloured hair, but it did happen. I suspect the longer the hair has been gone the longer it takes our hair follicles to normalise. Funny enough my hair is darker now then before, and curly, despite coming in as wispy white hairs in the beginning. I had to remind myself to be grateful for my success, the other day as I was trying to brush through the thick curls I now have thanks to jaks, Bangladesh suppliers, and this forum!
re reducing dose, i think the more gradual you reduce the dose the better chance you have to avoid relapse. Think dropping dose over weeks and months, so maybe reduce your dose from 20 to 15 alternate days for a month or two, then slowly reduce an extra day (so 4 days a week on 15, the rest on 20).
in January I reduced from 20 to 15 mg per day by gradual reduction. So far so good, no sheds, despite a bit of stress re homeschooling kids and working from home with my husband 24/7 (you feel me!?! Lol - I have no way to hide my online purchases when he’s home all the time)6. The reason I reduced was I had seen a program on the virus in China and felt supply of our meds may become temporarily difficult and wanted to ration my supply to last the distance. Thankfully Beacon kept up supply for quite a time after.
i will keep you guys up to date on how my reduced regime continues.
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Hello All,
This is my first post here. I have been following this forum for a while now. I am grateful for this site and also to the people who are selflessly contributing here with lots of information and regular updates. My daughter's alopecia started in 2013 when she was only 10 years old. Soon she lost all her hair. It was triggered by pneumonia and UTI. For years we tried every treatment thats available with no positive result. We came to know about xeljanz through this forum. We found a dermatologist couple of years ago who was ready to prescribe xeljanz.. He started her off with 11mg and after 3 months she started growing hair all over her head. It grew at a slow pace until a year and then she started losing again at some spots. We asked her doctor if it's a good idea to give her steroid shots to stop the hair loss. He wasn't too happy with that but he agreed for a short term. He gave her the shot on her hips. It did slow down her hair fall and then new hair started growing back again slowly. The doctor didn't want to continue with the steroid any longer but instead he advised to increase the dosage of xeljanz by 5mg more every other day and also combine it with Allegra. We are now giving her 16mg and 11mg on alternate days. This hasn't done much. Her hair growth has remained stagnant. Most of her hair is just 3 inches long and it's thin. It's been like this for a few months now. She is going to college in a year and we want her to be able to go wig free. We are happy that Xeljanz is working for her but she needs something more in addition. Can anybody suggest ways to stimulate faster and thicker hair growth in addition to Xeljanz? Appreciate your help.
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Hello - Has your daughter ever tried increasing the Xeljanz dose? Sometimes patients need a higher dose to really get the growth going, and then can eventually taper off a bit. Many people on this forum have gone up to 25 mg without any harmful effects.
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Hi Anna,
Thank you so much for your response. Yes, doctor did increase her dosage from 11mg to 13.5mg. Since she is only 16 years old(soon going to turn 17) not sure how much of the dosage we can increase. Her doctor is very good but is very cautious about increasing the dosage since he doesn't know much about Xeljanz. Usually I refer to this forum before going to see him and then discuss it with him. I will ask him if there is a possibility he can increase the dosage further. But is there anything else she can add along with Xeljanz to speed up the growth? Thanks a ton.
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