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: 927888

▶ Reply to This

Replies to This Discussion

Permalink Reply by Patchesforlife on June 14, 2017 at 12:13pm
Hi suzie! Thank you. If I may ask, was ur AA as teenager bad? Or was it just one patch thing?
Permalink Reply by Suzie on June 14, 2017 at 12:55pm

Patchesforlife I remember it was so thin in the back of my head that you could literally see my neck.  I honestly don't remember any "patches", it was just became very thin.  Back then (approx. 1981), my mother just took me to our family doctor and he had no clue what was happening.  I eventually had my hair cut very short and I remember the hairdresser recommended me using a conditioner and wrapping my hair in plastic to help maintain the moisture. It took several year before it all grew back, but I was till able to go to school with very short hair. But I NEVER took anything for it because we didn't know what it was.  It wasn't until this last episode 3 years ago that my hairdresser told me I had bald patches and that it looked like Alopecia.  I had no idea what that was and when I googled it I had my "aha" moment....that is what I must have had when I was a teenager.  Since that time I developed RA in my late 20's after my 2nd child and have been on biologics (Enbrel, Humira, Orencia and now Xeljanz) for over 15 years.

I hope this helps.  

Permalink Reply by Patchesforlife on June 14, 2017 at 3:12pm
Thank you! Any major sideeffects from being on biologics? I hate it when some people refuse ti even think abt xeljanz because they think it will have severe sideeffects
Permalink Reply by Suzie on June 15, 2017 at 10:36am

No major side effects for me.  My biggest complain is fatigue. I haven't had weight gain, but I try to work out daily to help my RA.

Permalink Reply by Starshine on June 14, 2017 at 2:28pm
Just wanted to chime in as a person with full and complete regrowth. Been on Xeljanz for over two years now. Was on 3 pills, now successfully on two. I heard that quercetin might be a good supplement to take in addition to Xeljanz, have not tried it though. I do not post as often as I did, but still keep tuned in to this forum. Xeljanz is definitely a treatment, not a cure, but it is the best we have for now. Hoping other biologic drugs will be approved soon for those who are not responding to Xeljanz.
Permalink Reply by Rascalx2 on June 14, 2017 at 3:00pm
Hey starshine, when did you have full complete growth? And were you AA,ATorAU?
Permalink Reply by Patchesforlife on June 14, 2017 at 3:11pm
Awesome news sunshine! Teally happy for you.
Permalink Reply by Football fan on June 14, 2017 at 6:06pm
Hi starshine you were one of the first to go on xeljanz and had trouble growing hair till you went on 3 pills a day.How long were you on 3 pills and how long have you now successfully been on 2?Maybe some of us need a high dosage to kick start the growth then it can be lowered to maintain it.
Permalink Reply by Starshine on June 14, 2017 at 9:23pm
Hi Football Fan. Yes, I started Xeljanz right after ADML. I have been on Three pills a day since December 2016. I alternated between 2 and 3 pills through Feb and have been on two since then. I got full regrowth at about a year and it has continued to thicken since then. Don't get discouraged if it takes longer than you think it should. Some people respond slower than others. I also take Plaquenil every other day, but I don't know if that helped or not. I have had no side effects other than some weight gain.
Attachments:
Permalink Reply by Football fan on June 14, 2017 at 10:39pm
Wow looks great. I'm in Mexico now on vacation and it certainly isn't pleasant wearing my wig at the beach in all this humidity!Someday I will have my hair back I'm not giving up!
Permalink Reply by Starshine on June 14, 2017 at 11:02pm
I know, heat is really tough in a wig. You may need a different biologic, but it is going to happen! Stay positive.
Permalink Reply by Suzie on June 15, 2017 at 10:36am

You look fantastic!  Thank you for keeping us up to date.  I don't have any side effects either other than fatigue....no weight gain, but I try to exercise daily for my RA.

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