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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 sadele on
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Update on my growth:
July 2013 - started losing the hair on my head. I was 4 months pregnant. By December I was completely bald. Still had eyebrows and eyelashes and body hair.
January 2014 - Hair started to grow back on my head. Had full re-growth by October.
December 2014 - Found a round spot on left side of head. Progressively lost ALL the hair on my head, eyelashes, eyebrows and body hair were gone within 3 weeks.
March 2014- Started xeljanz. Got "incomplete" results with xeljanz at 10mg a day. Still had to wear a wig and had no lashes or brows.
November 2016 - Stopped xeljanz because we were pregnant with our second child. Wound up having a miscarriage and hair fell out that had been growing. Decided to stay off xeljanz for 5 months to give my body a break.
April 2016 - Started back on Xeljanz, 20 mg a day. Got 90% growth and small lashes and brows back. The front hairline was very slow to fill in and stayed pretty thin.
June 2017 - Prefnanat with my son, stopped xeljanz. Most of my hair stayed during the pregnancy except the front and lashes and brows fell out. Had my little guy in February 2018.
April 2018- started back on xeljanz, 20mg, for steroid injections as well. Hair filled in and is continuing to grow in the front. I have most of my lashes back and all eyebrows.
Pictures show when I was AU and second picture is from this past weekend. The front is filling in but it's much shorter than the rest of the head because it's newer hair. I've had 2 rounds of steroid injections and 2 rounds of PRP (which was incredibly painful). I'm using Monet shampoo and take Ashwaghanda along with my xeljanz. I'm hoping that in the next few months the front will even out and I can rock a better hair style.
Don't give up my fellow Alopecia friends!
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Permalink Reply by Kathy on
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Another great success story, you look awesome! What is PRP? And have you tried other things along the way?
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Thank you, Kathy!
PRP is Platlet Rich Plasma. Your blood is drawn, spun and then injectes into the scalp. We offer it at my work so I didn't have to pay for it but it's pretty expensive and very painful. I did 2 rounds of that as well as 2 rounds of steroid injections. Only in the from of the hair did I have these injections. Im not sure how well the PRP works but because we do it in my office I wanted to try it out.
I'm still taking 20 mg of xeljanz.
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Wonderful! You look lovely!
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So happy for you Sadele you’ve been on a roller coaster ride.It truly is amazing the before and after pictures.Anyone that says it doesn’t bother them not having hair has got to be in denial.I am lucky that I have enough eyebrows and eyelashes to look normal when I have my wig on.I have some news .I don’t want to get too excited about but want to share with everyone.I stopped taking xeljanz on April 1 and decided to give my body a break and maybe start back again in September.I haven’t noticed a change in the hair I have everything seems about the same.This past week the dermatologist office called and they are going to start a clinical trial in the office!I haven’t been in the office for almost a year and a half And am so grateful they called me.All I know is it is not a cream but a pill.Im hoping if I do get picked to participate it isn’t another form of xeljanz.I told them yes,yes,yes.Three years on xeljanz with every type of combination has not worked for me.There must have been a reason I stopped xeljanz in April because I know they want you off everything for at least several months.My biggest concern is what if this is the other jak 1 and 2 and it doesn’t work for me either.I am going to keep my fingers crossed will let everyone know what happens.
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Exciting! Let us know how you go. So hoping for a treatment that works for the non- responders.
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Permalink Reply by Mashloum on
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I have a query about Lumigan isimha
is it safety to use for eyebrow and eyelashes ?
some area still not have the same trend of progress
if anyone used please share the experience of such spray
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I use it Mashloum.i think it’s the reason my lashes and brows came back quicker then my scalp hair. As long as you keep it clean and try to get it on the lash line and not in the eyeball( it doesn’t hurt the eye but unless you have glaucoma It’s probably best to minimise what goes into the eye).
From what I understand it extends the haircycle of the lashes and brows, so they get longer and fuller. A bit like minoxidil for the lashes/brows.
hope that helps.
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