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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 bibby on
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Fairly sure its autoimmune. Had this crap in my life for 32 year (im 41 now) Eyebrows and eyelashes never effected however only recently noticed patches in my beard so Xeljanz plan is a preventative strike before this condition makes its way to my eye brows and lashes (that would be devasting for me) and since its escalating to worst case ever for me I need a plan of action. I would be happy with 6 months full regrowth as I have 6 weddings to attend from October - Jan 2017. Will update accordingly , and thanks for your imput.
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Permalink Reply by Xeljanzmiracle on
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Thanks. I hope you can start Xeljanz sooner than July so you will have your hair back by October. Please keep in mind, when I say full regrowth I don't mean PRIOR LENGTH. As you can see from my picture, my hair is only about an inch long in the front, and shorter in the back. But I have no more bald spots. The hair is just at different lengths and phases of growth. When I increased my doseage to 3 a day, the resistant bald spots started filling in. Praise and Thanks to God and Science!
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I would be delighted with 1 inch full growth . That said it is the advantage of being male that men can keep their hair short. My fingers are firmly crossed that you have a major increase in growth to your desired level miracle.
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Thank you Bibby. It gets longer and fuller everyday. Everyone is amazed at my growth every time they see me. They remember when I shocked them and came out of my wigs after 6 years to reveal my TOTALLY BALD head last Spring. I told them I was trying to get on Xeljanz and they would all witness the miracle of my hair regrowth. Some of them thought I was crazy but they are ALL believers now, lol! My mom said I was bald the first year of my life. So I did better growing hair back on Xeljanz WITHIN ONE MONTH, than I did as a baby, lol! We have to remember that our bodies are fighting our messed up immune systems to grow our hair back; "growing against the grain" so to speak. It takes patience and time but it's happening!
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It's St Patricks day.
My Dad (rip) and mum (love) are Irish. I was born in Coventry England
Just had a gallon of Guinness...+
I will not post again until March 17 2017.
We all with Alopecia hope there is .................something worth posting about. Is it xeljanz??????? i doubt it
bye dom
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Dom, sorry to say but we will NOT miss your negativity on here. Even with your parting words you just couldn't help yourself. Sad that some people cannot be genuinely happy that others are experiencing success. Thanks for removing yourself. The rest of us will continue to post our wonderful and inspiring experiences with Xeljanz and our REGROWTH pictures. Too bad yours will not be among them, but that's your choice. Since you say you won't be posting for a year, do yourself a favor and READ the ongoing clinical trials and and medical articles/journals about the safety and effectiveness of different biologics. Use that time WISELY to educate yourself, so you can have hope for yourself and GIVE hope and accurate information to fellow sufferers. That is my prayer for you.
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Couldn't have said it better myself!
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Thank you Fighting Alopecia. How are you doing? Did you get your prescription for Xeljanz? Have you started taking it yet?
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You are so sweet to remember!
My prescription will be ready on 03/21/2016. My Dermatologist wanted me to wean off Methotrexate first and also prescribed another medication for me to be on for 1 month prior to start on Xeljanz. Fingers crossed for 03/21/2016.
Two weeks ago I also decided to chop the remaining hair off - it wasn't even manageable anymore and wouldn't hold on to a small clip. So now I am rocking a wig while I wait. I wish I had done this sooner - then at least I would have eliminated the stress of the daily hair loss. I am experiencing some loss in eyebrows, and I am hoping the Xeljanz can at least put a stop to this while i wait for my scalp hair to grow back.
I'll keep you all posted as soon as I start the Xeljanz and what type of results/progress I have.
Wishing everyone a "hairfull" body for the rest of their lives! Dom included....
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Xmiracle, due to your reply (above) which is marinated in hubris. I will be staying!
Xeljanz has made you conceited and blind.
Roman 12:16
Live in harmony with one another. Do not be proud, but be willing to associate with people of low position. Do not be conceited.
To the Pied Piper of Xeljanz:
I have read some of your replies when people state they:
1 are having no response
2 some response
3 they are worried about side effects.
You just brush it off. "In for a penny, in for a pound". We need to see more users.
You are right thanmikron, it is wise not to overtax your immune system and to proceed cautiously. Everyone responds differently. I'm glad we are finally getting some topical users on here so we can gage their response in due time. I'm sure that most of us would like to switch to topical usage instead of oral to lessen the possibility of long term systemic side effects. We also want to see if Topical R works better than Topical X, especially since it is over 4 times the price per tube! Who prescribed the Topical R for you? Did you buy it from that compounding pharmacy in Philadelphia?
Forward?
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Hi everyone, I don't really have a great update on the Xeljanz topical cream. I've been using it for 2 months now in one my eyebrows. No improvement happened so far. I'll continue until I run out, but probably won't be buying another one. Because everyone's body reacts differently, I don't want to discourage anyone from trying.
On the other hand I've been having great growth results on the last combination of Rogaine, Xeljanz 2x/day and prednisone 300mg 3x (once every 4 weeks), but I won't be continuing prednisone because it lowered way too much my immune system, and I got so sick 2x over the course of the 3 doses. All is good now and I recovered from the infections, but it wasn't fun! We tried to increase Xeljanz to 3x day, but my insurance refused to pay, so I'm just continuing 2x day plus Rogaine.
I've been doing good on Xeljanz 2x day and only side effect I experienced is some acne that comes and goes. Besides that all is good, no weight gain or anything else. I still have a few resistant spots, but slowly it seems to be filling in. I think I have about 70% regrowth by now, but it's on the thin side. I used to have a really full head before, but that was almost 20 years ago! So it's actually awesome to be able to grow hair after so long!
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That's amazing. We are all gonna make it.
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