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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Related Post on Alopecia World:  

Xeljanz / Tofacitinib

Olumiant

Jak Inhibitors

 

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Replies to This Discussion

Permalink Reply by Starshine on July 19, 2017 at 11:14am
Hi Rascalx2, I have full regrowth of head and body hair. Scalp hair came in white and stayed white for the most part. Body hair did turn darker. I am older so it may depend on your age. As it got thicker, the color, although white, was not transparent and looked a lot better. I know it is frustrating, but some people do take longer to get acceptable growth. You are getting some growth which is a good sign. You may need to up the dose.
Permalink Reply by Suzie on July 19, 2017 at 11:16am

My hair was white and would not take hair color when it first starting coming in.  It took about 5 months for the hair to start turning color, so hang in there.

Permalink Reply by Rascalx2 on July 19, 2017 at 12:18pm
Thanks, been on 20 mgs xeljanz a day for past 3-4 months and the results I have are definatley from mg increase, have 6 black hairs on my knees, which you know thats where you want it.
Permalink Reply by Milana on July 19, 2017 at 11:38am
Hello Erdem,
Sorry to hear you are facing the same problem with not getting scalp hair from Xeljanz. I hope the increased dosage will kick the start. Please keep us updated on your progress. Wishing you a complete recovery soon.
Permalink Reply by Patchesforlife on July 20, 2017 at 5:34am
Can you take picture of xeljanz you have? The two boxes next to reach other?
Permalink Reply by Milana on July 20, 2017 at 8:46am
Here is the picture:
Attachments:
Permalink Reply by singh on July 20, 2017 at 11:32am
Hey milana, have you had them xeljanz tested ?
Permalink Reply by Milana on July 20, 2017 at 1:38pm
Hi singh, they are legit I bought them from one of the large pharmacies in Istanbul. They worked very well to regrow my brows and lashes.
Permalink Reply by Sady on August 5, 2017 at 8:55pm
How much does it cost in istanbul & does any pharmacy there support global tax refund ?
Permalink Reply by asp2014 on July 20, 2017 at 8:39am

I would suggest getting cortisone injections while you take Xeljanz. This combination helped me tremendously. 

Permalink Reply by Milana on July 20, 2017 at 1:59pm
Thank you for your suggestion asp2014. Xeljanz and cortisone injections combination worth trying. The reason I didn't try it before is that cortisone injections stopped working on me before moving on to Xeljanz. I had figured they wouldn't be good for me anymore. But I will give it a try.
Permalink Reply by asp2014 on August 6, 2017 at 3:37pm

Yes, I thought the same thing. In the past, it would grew some hair but then it would just fall out soon after. When my alopecia really got bad the shots stopped working altogether. This is why I was also hesistant to try the shot, again. But this time, it has worked, really well. Good luck  

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