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

 

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Permalink Reply by LJBMD on July 12, 2019 at 2:06am

Hi: which company is doing this trial? Thank you 

Permalink Reply by Cassidymain on July 12, 2019 at 4:13pm

This is a trial with Pfizer for the PF-06651600 drug! 

Permalink Reply by LJBMD on July 12, 2019 at 6:05pm

That is excellent! Pfizer just extended PF06651500 to a trial with 860 participants. They are testing the medication for long term use now. This means they think it works and they think it’s is safe. 

Permalink Reply by Frida Rupert on July 12, 2019 at 2:55am

Hi Cassidy, mine took 5 months to get started, but once it started around 4/5 months to a point where I had coverage thick enough to ditch my wig. Great to her of your growth so far and a new product in the works!

Permalink Reply by Cassidymain on July 12, 2019 at 4:17pm

Thank you for your response! I’m so excited with the coverage i have but it makes me more impatient to not wear a wig as soon as i can. This gives me a good idea of what to expect. And yes! This is the last phase of the trial and then there will be a two year extension. After that i’m hoping this will be approved for everyone. My hair has started coming in a lot the last few weeks. I can’t wait for full regrowth! 

Permalink Reply by magmck on July 13, 2019 at 5:23am

Hi Frida 

thanks so much for all the really good information you post - it’s been so helpful for me personally. I’m currently taking Berberine and I’m on the verge of taking Tofacitinib from Beacon. I think I would like to undergo the shingles vaccination and hopefully doctor will monitor my bloods I would like to ask him about co therapies as well.  Am I right in thinking you supplemented Tofacitinib with prednisone and if this is the case can I ask what the frequency and dosage was and at what stage you did this 

thanks again 

margaret 

Permalink Reply by Frida Rupert on July 14, 2019 at 7:41am

Hi Margaret, I think to start off with just take the Tofacitinib on its own and wait 3 months or so before adding any steriods. If growth isn’t happening or you aren’t getting the coverage you’d like then add in a steroid pulse. I did a steroid pulse at 5 month in as my growth took a long time to kick in. My own method was to take betamethasone 5mgs two consecutive days of the week, I did this for three months and then weaned down (took a mg off each week for 5 weeks). I have heard of a similar method with prednisone - it was a monthly dose though - I think 8gs a day for 3 days in a month. I personally responded better to betamethasone but doctors seem more experienced in prednisone so often they prefer patients to take that route. The trick is to use the steriods for the shortest period you can while getting the best results. Many on here got growth without steriods so there is a good chance you won’t need them. Another easy co therapy that some on here have used is to use Allegra as there is some indication that it works well alongside the Tofacitinib. Getting the shingles vaccine is probably a good idea as you can’t get it once on the meds and you don’t want to be starting and then stopping the meds too abruptly to get a vaccine once you commence treatment. I wish It’s exciting that you are starting your journey. I really look forward to hearing of your hair growth! X

Permalink Reply by Mashloum on July 12, 2019 at 9:03am

My son was at that stage between 8-9 months

Permalink Reply by Cassidymain on July 12, 2019 at 4:18pm

Do you recall how long it took for him to get terminal growth? 

Permalink Reply by Nat on July 11, 2019 at 10:02pm

Hi Cassidymain,

It took 6 months for me. I just stopped wearing a wig.

Permalink Reply by Cassidymain on July 12, 2019 at 4:19pm

Thank you for responding! Congratulations on full regrowth that must feel amazing 

Permalink Reply by ladybug1 on July 12, 2019 at 6:19am

Thank You so much  I  feel so much better about order this.  It's such a shame we have to go this route.  No one truly knows how we feel until this disease strikes them or a loved one. 

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