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: 927889

▶ Reply to This

Replies to This Discussion

Permalink Reply by singh on December 12, 2016 at 6:38am
It's more than a cosmetic disease, as people with alopecia have a problem with there immune system which can lead to other immune system problems. I think a lot of people know this is just a treatment for people who really want there hair back, however don't feel like you have to take this all your life, because there are so many treatments on the arise hopefully safer ones and eventually a cure too.. Probably throughly stem cells.

Personally I think people are using this to go into remission or as a bridge. Dr King has said people have been using biologics for years.

Kind regards
Permalink Reply by Xeljanzmiracle on December 12, 2016 at 11:26am
Excellent response Singh. Not to omit the devastating emotional and psychological toll this disease has on us. When I was AU for 6 years, I kept it a secret from EVERYONE for 6 years! No one, including my family, knew except my kind, supportive husband and one friend, who also had hairlossbissues. I wore burdensome, hot wigs in the public eye, even while swimming. Even when I picked my husband up from work at 1 am in the morning, I had a wig on. I thought people would think I looked like a MONSTER completely bald, with no eyebrows or eyelashes. That turned out to be in my head, when I actually "came out" 6 years later, but in the meantime I felt ugly without hair. And I know, from my many friendships on AW, that many of u feel the same way right now. For some, this has been a LIFETIME of never feelings normal or attractive and Xeljanz has given us hope. Hallelujah, which means "Praise Jah." We are grateful for scientific research and progress as well. Ever since my hair started regrowing, most of my bald male friends have been saying "Give me some of those pills Valeri!" And sadly, have to inform them that Xeljanz doesn't work for male pattern baldness. But hopefully a better treatment/cure is on the way for them too. We want hair! We want hair! Lol.
Permalink Reply by Jcortez05 on December 11, 2016 at 8:43pm
I take mine 2-3 a week I don't take it as directed this is how it looks since I shaved it aug 17th .. I sort of want to trick my body to think it doesn't need it .. idk if it will work but in going to try .. I do know that while on the medication I had a stressful experience and my hair started thinning so it def didn't stop it
Attachments:
Permalink Reply by Rascalx2 on December 12, 2016 at 6:22am
Does anyone who is having little or no response from xeljanz have other autoimmune disease ? I have ulcerative colitis for 20 yrs, is really been under control for 15+. Just thinking maybe I have less chance for growing anything. Been almost 5 months on xeljanz and still nothing.
Permalink Reply by Merry on December 12, 2016 at 9:44am

Rascalx2, I have had a response but only when my dosage was increased to 3 then 4 pills per day. I have vitaligo and Hashimotos disease which are also autoimmunne diseases. I also use Rogaine, Clobetisol, and a light band to try to increase the growth. My regrowth seems to be slower and less dense than most I've seen on here, but everyone is different. I was AU for about 7 years. I was on 2 pills per day (10 mg per day) for 6 months with no response before my dosage was increased. I have had no side effects except higher cholesterol. 

Permalink Reply by Rascalx2 on December 12, 2016 at 10:03am
Thanks merry
Permalink Reply by Erdem on December 12, 2016 at 12:58pm

Hello Merry,

I have smilar story as well . I was taking 2 pills in a day during 6 months, but could not see a good improvent on scalp . I have AU for 7-8 years. Now I increased it to 3 times/day . When did you start to see  a good regrowth after you increase the pills to 3 ?

My problem is , i see the hair roots or fuzzy hairs on scalps but it does not get pigmented to Black or become strong/adult hair.

Thanks in advance for your reply 

Permalink Reply by Xeljanzmiracle on December 13, 2016 at 1:01am
It's coming. Just be patient. Some people need a higher dose to get better results. The hair usually starts out blondish white and sort of brittle before the pigment comes in and it changes texture.
Permalink Reply by Merry on December 13, 2016 at 8:54am

Erden, 

I began seeing growth about 6 weeks after upping the dosage. I was a natural blonde when I had hair, but now that I am 57 it might have lost some pigment anyway. However, my new hair still has not gotten any pigment and is very, very fine. Some of it is about 4 inches long and curly, but it is like baby hair. The texture has not changed yet after 13 months of growth. I'm still hoping. I have colored it to try to make it show up more and feel thicker. I t doesn't hold color well or for very long. I am sure that it will be at least another year before I can feel comfortable without a wig.  But if I were a man, I could go out with a short cut and feel good about it now. Don't let this discourage you! You could have faster results! I'm happy just having lashes, brows, and some hair.  Congrats on the new growth you are seeing!!

Permalink Reply by sultan h on December 14, 2016 at 6:11am
hi Merry
How many pills you take now ??
And what the best dose your hair grow up on it ?
Permalink Reply by Merry on December 14, 2016 at 8:48am

Sultan, 

Hi! I am taking 4 pills per day now and that seems to be the most effective dosage. 

Permalink Reply by Rascalx2 on December 15, 2016 at 1:18pm
Hey Merry, have you decreased mgs in past? If so, did hair start to shed ? I have gone upto 3 a day (15mgs). Gonna wait few weeks, get blood work then go up another 5 mg. Been on 15mgs about two weeks---still nothing, know its slow for any results.

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