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 Patchylatchy on
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hi everyone, I apologize for asking too many questions. Has anyone seen some regrowth comin up on their lower lash line but then the hairs break easily.. I tried latisse and it isn't working, its driving me crazy. every time Im hopeful I see some regrowth it falls off easily...
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Hi guys,
I have a question for all of you on xeljanz. I have been on xeljanz continuously since April 2020, and increased my dose from 10 mg/day to 20mg/day early August 2020. Although my hair has been somewhat growing back, I still have a few patches my new derm has deemed as active. When I went to this new derm's office on Friday, she told me that I should get corticosteriod injections into the 2-3 active patches I have right now, since they are in cosmetically sensitive areas and will likely continue to spread. I was under the impression I would never have to get those shots again once I started Xeljanz, and did not really want to do it, but felt obliged and (as we all are too familiar with) scared that it was going to get worse, so I did it. She probably injected around 6-8 times in 2 areas on the top of my head. I'm wondering if anyone else has had their dermatologist suggest/inject corticosteriods (kenalog) while on Xeljanz? Any thoughts would be greatly appreciated :)
Thanks
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Thanks for that! The reason why my new derm wanted to do the shots is because she still thinks I am actively shedding. I have lost the majority of my hair so I think I have become desensitized to the shedding and could still be having it happen now. Wish I could be of more help - but I think we both just have to be patient w the drug and hope it will fully kick in soon if it hasn't already :)
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overall I would say after about 2-3 months on the drug the shedding has definitely decreased though!
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Permalink Reply by Rascalx2 on
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If you are getting spots then get the shots, this is pretty unpredictable disease and at times can become instable. Getting the shots has helped me, but it certainly is not overnight success. I noticed that if a shot in the bald spot takes about a month , maybe longer to fill in
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Hello,
You can find attached the update of my hair starting from 2017 when I had a lost a really large portion of my hair to Sep 2020.
I have a couple of minimal spots which are not visible in the latest photos since I grew my hair out.
I have been in 20mg Xeljanz per day except twice per week on 15mg for the last year. I am thinking of tapering once more and going to 15mg three times per week. I am taking Minoxidil 10mg day for around 15 months. I believe it has helped me in combination with Xeljanz.
During the summer I have stopped Xeljanz for the second time in order to have a surgery. I stopped it for 10 days, 5 days before and 5 days after the surgery. I didn't see any loss of hair. The first time I stopped it which was a year ago, I had some thinning of my eyebrows and a couple of minor new spots showing up, yet I had just started Minoxidil.
Due to the pandemic, I have not physically visited any doctor, so I have not received a kenalog shot in my head since January 2020. I saw a couple of questions about receiving them while on Xeljanz. I had been receiving kenalog shots on my hair on my head, eyebrows, beard from 2017 till January 2020 periodically every 2 months or so. I believe they had been helpful for myself.
Trying to get video call appointment with Dr. King (who is my doctor) has been difficult. Growing pains I guess for the whole healthcare system to transition to more online focused processes.
With the whole pandemic situation and travel restrictions I am also looking to create a larger stock of Xeljanz. Has anyone ordered from Beacon lately?
Moreover, has anyone found a way to purchase Minoxidil online from a trustworthy company like Beacon?
- Attachments:
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aw_sep_2020.pdf, 5 MB
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Hi mastros . This is really an awesome head of hair . Have you ever tried beacon or you are thinking to switch ? Also have you ever had PRP for hair thinning ?
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I have been taking the original till now. I do have a small amount of Beacon Tofacinix if I run out of Xeljanz. Multiple people in the forum have been using them with a small adjustment on the amount of pills - taking 5 instead of 4, because the potency of each pill in tofacitinib has been measured by some people in the forum to be 4.2mg or so instead of 5 mg.
I haven't tried PRP.
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Amazing results Mastros! Interesting you never lost your hair color (mine is coming in snowy white, other than my eyelashes which have just started to get some color).
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Hi bro
I have been on xeljanz for about 4 months now ( 2 tablets/day). I have full head but really thin. My eyebrows and all body hair are growing back very slowly my beard is growing back slowly, but no mustache or eye lashes at all. My dermatologist is thinking about increasing the dose to 3 tablets/day to enhance the hair growth but I am worried that it might affect my body. Do you think increasing dose is necessary?. I was in corticosteroids before it was miracle but couldn’t continue because of the risks concerning long term use. So, I shifted to xeljanx. The problem is my hair is still thin, do you think it will grow thicker if I leave it grow ?
best
Ahmad
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I am not a doctor and all I can talk about is my own personal experience. Being on 10mg/day for the first 3 months did nothing for me. Switching to 20mg/day and within 8-10 weeks I started noticing the growth significantly of my hair.
I don't know if your hair will grow thicker, though from this forum the majority of the people in my observations that have good results with Xeljanz, they receive more than 15mg/day.
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Hi Ahmed
I'm so happy for you! May I know where you're getting xeljanz from?
I can't find the medication in Bahrain.
Regards,
Sara.
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