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.

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

Related Post on Alopecia World:  

Xeljanz / Tofacitinib

Olumiant

Jak Inhibitors

 

Views: 929591

▶ Reply to This

Replies to This Discussion

Permalink Reply by Sahel on March 9, 2021 at 7:57pm

Hello

Some of the recent studies which I am going through now is that getting sick with covid 19 will make you loose your hair in a very fast way,  this is happening to me after the 14 days quarantine i was fine but the post corona syndrome made my hair fell like rain so consider that most of people might have covid without symptoms,  check your antibodies test might be thr reason for hair loss

Permalink Reply by Joserid on March 17, 2021 at 4:24pm

Hello,

New here from Spain. 42 yrs old and AU 5 yrs ago.

Trials with cortisone injections, methotrexate, minoxidil, food diets, ... without success.

I had androgenetic alopecia, taking minox and finasteride with great results. I leaved the treatment with 31 yers old, later lactose intolerant, stressful and 2015, with 37 yrs old, the AA appeared in my life. Not sure if possible relations.

I was interested in tofacinib but covid arrived. It seems my destiny is bolt :$

Also in Spain, tofacinib is not allowed for AA, it is risky for people with blood problems and it is not recommended at all from 65 yrs old.

So, I would love your recommendation:

- should I start with tofacinib?

- do the side effects increase with covid?

- should I wait a covid vacuum?

- could I use topical tofacinib cream for my eyebrows atleast? Do you have any experience here?

- where I could buy tofacinib pills and tofacinib cream?

Thank you for your advices. I am taking this sick not so bad, but as I guess all of you,  I would love to recover my image. 

Permalink Reply by Joserid on March 18, 2021 at 6:23pm

Help please!

Permalink Reply by Nat on March 18, 2021 at 6:29pm

Hi Jiserid,

In my opinion ( and I am not a doctor) you can start Tofa if you are otherwise healthy.

I think, you can start now and don't wait for COVID to end. You can buy generic Tofacitinib pills from Beacon in Bangladesh. 

Permalink Reply by Joserid on March 20, 2021 at 1:28pm

Thanks Nat. Did you hear about the tofa cream for eyebrows?

Permalink Reply by Nat on March 20, 2021 at 2:01pm

Hi,

I have heard but never used the cream.

My eyebrows and eyelashes came back on Tofa pills. 

Permalink Reply by Joserid on March 20, 2021 at 4:59pm

Did you recover all your hair? What is your treatment and dosis? And to buy in Beacon, how do you do it? By email?

Permalink Reply by Kate on March 18, 2021 at 12:48am

Hi everyone

I have had great success with Xeljanz generic, but my WBC count has been constantly getting lower and lower since starting the treatment. Now it's slightly below 3 and my derm wants me to stop the treatment immediately and even see a hematologist! I'm kinda stressed about this having read all these awful things about low wbc etc.. Also, the prospect of losing all the hair again feels just unbearable. Has anyone had low WBC during the treatment - what do your doctors say?

Permalink Reply by Nat on March 18, 2021 at 6:05am

Hi Kate,

I am taking Tofa and my WBC is Ok. My daughter's WBC was very low and we couldn't figure out why. After a while, we realized that it was due to Melatonin. Do you take any other meds or supplements? Maybe it's not Tofacitinib's fault. 

Permalink Reply by Kate on March 18, 2021 at 6:14am

Hi Nat!

I take a few other supplements, vitD, fish oil and vitamin consistently, sometimes add a few others but nothing that should impact the wbc.. will google them now 

Permalink Reply by Nat on March 18, 2021 at 6:45am

Good luck!

Permalink Reply by Linda on May 21, 2021 at 4:03pm

Kate,

That is heartbreaking, I imagine many of us may end up with low WBC from this drug but I hope not. I too would stop the Xeljanz if it were me, hair loss sucks, but it's not cancer!

anyone else on the blog have this happen? 

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.

© 2025   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service