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.

-----------------------------

AW:  Other discussions on Xeljanz / Tofacitinib

https://alopeciaworld.com/main/search/search?q=Tofacitinib

 

Views: 927908

▶ Reply to This

Replies to This Discussion

Permalink Reply by katiegirl on October 12, 2015 at 4:00pm
Do you know how long she was on one pill a day? I recently went down to one but only two weeks ago
Permalink Reply by singh on October 12, 2015 at 4:08pm
4 months! But I think that is still good ! And just up the dose when needed.. This is treatment more than a cure I think
Permalink Reply by katiegirl on October 12, 2015 at 4:32pm
Are you sure four months? I used to follow her on Instagram I don't think she was on one pill for that long? If so than I agree that just up the dose when needed but I'm afraid she wasn't on a decreased dose for that long
Permalink Reply by singh on October 12, 2015 at 4:52pm
Sorry I've just checked it says she went on 1 pill a day about 11 weeks ago or 3 months rather than 4
Permalink Reply by katiegirl on October 12, 2015 at 4:54pm
Ok well three months is still significant .. That saves some money at least. I will stay on one pill a day and see what happens. Any sign of hair loss and I will up my dose again will keep you all updated.
Permalink Reply by singh on October 12, 2015 at 4:58pm
Yeh all the best Katie stay positive and yeh 3 months is still good ! Keep the body guessing ! Keep us update
Permalink Reply by Steve on October 12, 2015 at 3:14pm

Do we have any date off when Dr King is going to be releasing his clinical trials information?

Permalink Reply by Sabri on October 12, 2015 at 4:13pm
Currently scheduled until November 2019, on-going clinical trials for the drug started in February 2007. In April 2011, four patients died after beginning clinical trials with tofacitinib citrate; Pfizer said that only one of the four deaths was related to tofacitinib - See more at: http://www.belgraviacentre.com/blog/treating-alopecia-universalis-w...

http://www.belgraviacentre.com/blog/treating-alopecia-universalis-w...
Permalink Reply by Starshine on October 13, 2015 at 7:45am
Hi Serinaadele. I have been AU for about a year, AA before that for 2 years. I know it is frustrating, especially seeing others who have such great results. Everyone is different though. ADML took a long time too, but he stuck with it and it paid off. I would definitely give the 20 mg dose a chance. My own progress is still slow, but I do have 90 percent of my hair back. It is still mostly white though and the sides are thin. I did get lashes and brows back but they too are white and fine. Thinking of getting brow injections to see if that helps.
Permalink Reply by Football fan on October 14, 2015 at 1:50pm
Wow hair shedding on 1 pill a day after 3 months is certainly not good news!That means all of us on 3 pills a day will never be able to even go down to 2pills daily.There probably is no maintenance dose.Who will be able to afford this treatment indefinitely.
Permalink Reply by Starshine on October 14, 2015 at 2:28pm
I think once your hair has mostly come back on 3 a day, dropping back to 2 should not cause shedding, you may just not exoerience as much new growth. I don't think anyone knows for sure yet what the maintenance dose will be, if there is one. It will probably be different for everyone, and will most likely be trial and error. Just a guess though.
Permalink Reply by singh on October 15, 2015 at 10:59am
Well said mate I have to agree with you.

RSS

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

© 2024   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service