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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 Frida Rupert on
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Yeah I got hashimotos too, though I had a whole bunch of things happen leading up to Alopecia so I think I’m just an autoimmune mess to be honest. My hashimotos hasn’t hit me to bad except I can drop weight very fast when it gets triggered. I wasn’t diagnosed with hashis until I had tests run for the Alopecia so it’s a chicken egg scenario.
i grew up as an expat in a tropical area and got malaria multiple times s a kid- I think that set my body on a course which has led to propensity to autoimmune problems. For a time I went to a very small expat school- there were very few kids in my class and of the ones I am still in contact with 4 others have autoimmune issues- one is Au (from childhood), one has MS, one has lupus and then theirs me- I think there were only 4 other girls in the class and I’ve lost contact with them so don’t know if their health status... it could have been a virus we got or something.... or it could’ve been triggered by the birth of my son (now diagnosed autism), the birth was bad, complications, blood transfusions, eclampsia, and I never recovered my health- my son was a difficult baby- I was always sick with some virus and could never recover. In 2016 I got glandular fever and very serious ear infection, then my sons diagnosis and bam - the straw that broke the camels back... bye bye hair.
Interestingly enough, and I hate saying this cause I don’t want to jinx myself, but I have felt soooooo. Much better on immunosuppressants then before. I rarely get sick and I used to always feel slightly nauseous but now I’m on immunosuppressants that’s gone. I kindof think my immune systemWas just eating me alive so to speak.
i do worry about my future with hashis, as I am 35 now and need to last a good while so I can see my kiddos grow up and maybe even meet my grandkids! How do you cope and how has it affected your life suzie?
ps excuse my bad grammar - auto correct and editting on my iphone on this site is a nightmare so I am just telling my grammar fairy to shush!
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For those that got Xelsource for this year I have a question. My refills say I only have 2 left. Should I be concerned? I was told I would have a full year (EOY) prescription. This means I would have had only 7 months worth of medicine. Any experience with this? Did someone make a mistake on there end and miscalculate?
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Hi everyone,
I have an important question that is need to know ASAP please.
I would like to know is there anyone taking xeljanz who have had alopecia more than 10 years and had success?
Whether you have had AA, AT or AU but more than 10 years and has results ?
As my doctor would like to know please ? And I can show him these answers.
kind regards
Singh.
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Hi Singh, I have no hair around 10 years and started Xeliganz for 4 months now and regrowing some hair and fluff, attached picture if it’s helpful .
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hi shad you do not have a lot of growth look on my news feed on 3 months my growth
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I know Kevin, I think I’m slower than u but still coming which is good sign:)
hows your hair now?
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Thank you Shad ! I will present this along side other people’s responses.
i think xeljanz2015 also hasn’t had hair for 15+ years and now has good regrowth. So will present all this.
As I have seen a post by Dr King saying it’s less likely to work with people who have had alopecia for more than 10 years..
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What dose are you on Shad? Have you upped your dose ?
your growth is coming on great ! All the best
Singh
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Don’t be discouraged Shad. I had next to nothing at 4 months and now have it all back - I am only a short term alopecian but some of us take longer for it to kick in. Those hairs and flufff on your head are what mine looked like when it started happening.
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