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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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Replies to This Discussion
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Permalink Reply by Djp on
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Ok, I am all set to pay through Transfer Wise. However, I have not been able to enter my invoice number anywhere. After I select "pay" will it first "pop up" with an option for me to enter an invoice number? Thanks!
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Hi Merry, sorry to bother you again but I am ready to pace my order through TransferWise but There is no where to add the invoice number. How did you do it? Thanks.
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The only place I could find to add the invoice number was a section for a message to Beacon. It said it was for an email only. I don't know if it helped with my order or not. I have not received my order yet.
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Merry did you get your order? Just curious. I cant get them to respond and also, I get a pop up message on their web site that they are closed per the government.
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I’m not new to this site but I don’t post much. I have a question for everyone I’m currently on Zeljanz 10 mg once a day for about 2 months. I’m taking hair skin nail vitamins. I’ve done steroid shots since December. I keep losing waking up to more spots everyday. I’m at about 75percent loss of hair. I don’t know if it’s the stress of the Coronavirus or if the Zeljanz is not working. Any suggestions would be helpful on what to take or up my Zeljanz safely.
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Hi Lori - it can take up to and beyond 6 months for the JAKs to kick in for sure. I would absolutely stick with it, and if you can work with your doctor to increase the dose now would be a good time to do it. Do not despair - it can take many many months to work! I know it's tough when so many people seem to respond so quickly, but many of us had to wait much longer to see results.
Anna
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Hi Lori, I think patience is the hardest thing with this treatment - I needed 5 months, on 20 mg and a steriod pulse before it started happening for me. I now have full growth and have had full growth for almost 3 years. I always advise giving the treatment at least 6 months up to 12 months to start seeing a result. Hair growth is slow, and when your body is attacking follicles the attack needs to be well and truely shut down before hair can even begin to grow. Anna’s advise is spot on- I would ask about increasing dose- many need the higher dose, particularly at the start to get going and can very slowly and carefully wean down once growth is established. Also- for those who have ordered from Beacon - I got my package a week after they confirmed postage (it arrived yesterday) so they are still trying to get it to us quickly even in the current environment though being in Australia may be different to North America timeframes.
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Aa... Been talikg togacinix for a year 15 mgs a day been my lashes started to grow. suddenly about 10 daya ago it started rk fall down. And started taking 20 mgs in the last 2 days.
Any idea why it started falling and what can I do?
Ps I used a cream to start the initial growth but csnt use it anymore. Long hair
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Hi Sahel,
Have you seen any patches? There are people who do have relapses, most of these seem to pass with dose adjustment or just riding it out. I’ve had a few “sheds”, not noticeable to anyone but me, and I increased dose temporarily - though I think in the most part it would have recovered without the increase if I’d just held my nerve. See if the shed eases up with the higher dose and try not to stress (easier said then done). If you are not adverse to minoxidil it is very handy at thickening up growth, though you gotta be in it for the long haul.
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