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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Permalink Reply by Football fan on June 26, 2015 at 1:51pm
Going in for my 3 month checkup.My doctor is new to this medication so can anyone tell me what blood tests are done at 3 months?Also taking Prilosec not sure when to take it with the xeljanz.Hope some of the coupons work will let everyone know.No new hair yet but going to stay positive!
Permalink Reply by sadele on June 26, 2015 at 8:24pm

Hi!

Were you able to get your insurance to cover the Rx? I just got my first month through the co-pay card and I'm creating a packet to appeal my insurance company to cover the monthly cost. I'm so thrilled that you met with Dr. King, I meet with him in August so it will be wonderful to hear his perspective on this whole situation. It would be great to see the progress your daughter will be experiencing! 

Best to you both!

Permalink Reply by gowml on June 26, 2015 at 8:13pm

I don't understand why dermatologists are prescribing Xeljanz knowing that hair is very likely to shed once the medication is discontinued. Nobody knows whether it will be effective at a lower maintenance dosage. Given possible side effects and high cost, I don't see how staying on this medication for lifetime is an option. I am sure Dr. King and others realize this, but they are still bullish about getting patients on-board. I don't mean to sound pessimistic, especially in light of people's amazing results, but I just don't see how this can be sustained long term. What do you guys think?

Permalink Reply by sadele on June 26, 2015 at 8:19pm

I believe the hope is to go into some sort of remission. Or, perhaps, going on a maintenance dosage to continue hair growth.

Either way, it seems as if this drug is giving a lot of people hope and maybe this is just what we need.

Permalink Reply by gowml on June 26, 2015 at 8:33pm

I don't think anybody's alopecia went into remission after going off this drug. People continue taking it at full dosage to keep their hair. Hope is great, but doctors have to be realistic.

Permalink Reply by AlopeciaDestroyedMyLife on June 27, 2015 at 9:50am

I can confirm just 1 pill every 2 days stopped my alopecia from spreading within a week.

Permalink Reply by katiegirl on June 27, 2015 at 12:07am
I understand your points .. But .. I also think very similar to those with RA who are taking this .. They will also have to continue it to find relief of their symptoms. I know taking this may be giving me false hope but just to have hair for even a year is better than nothing (at least that's how I feel). I hope by the time by hair is fully back or within a short time this med will become generic for alopecia patients.
Permalink Reply by taraw on June 27, 2015 at 2:35am

Well I will let you know what happens.  I was on Xeljanz for three months, and stopped a month ago (part of stanford trial).  So far, I am maintaining what I grew - but not growing much new hair.  I think the point of the trials is to find out exactly what happens when people stop at different times.  We shall see - I am not sure if I will go back on yet.  I really do not want to take the xeljanz for more than 6 months.  I regrew about 70% of my eyelashes, 40% of my eyebrows, 50% of the hair on my head after having AU for 4 years.

Good luck everyone!

Permalink Reply by lusha22 on June 27, 2015 at 9:51am
Thanks nickibee for responding! I'm so glad to hear that, and wish you the best of luck with your progress!!
Permalink Reply by Carlie on February 18, 2018 at 4:17pm

Hi Tara,

We haven't heard from you in a long time. How's it going and did you stay on xeljanz?

Permalink Reply by Starshine on June 27, 2015 at 11:11am
For what its worth, I agree with Katiegirl.
Permalink Reply by kimberj on June 28, 2015 at 11:27pm

Agreed!!!

After being diagnosed with several autoimmune diseases such as: RA, Hashimoto's, Gluten Intolerance, and Alopecia, I pray for ANY amount of normalcy I can get!! Oh, I forgot the Vitiligo that I have had since I was 5.

Two years ago I thought I was going to have to give up life as I knew it due to RA. The pain I went through everyday was awful. I could barely complete every day living activities. At one point I couldn't even open a bottle of soda. Then all my hair fell out on top of that!! I felt like giving up and never leaving my house. My rheumatologist started me on Plaquenil and I started to feel some relief and improvement. My hair started coming back in pure white (I didn't care! Hair is hair!). Although I was doing much better, I still had residual pain in my knees, elbows, and hands that made activities still difficult. Some things I had to avoid all together. My life was dictated on my ability to move and if I was having a good day or not. Then it happened, my Dr started me on Xeljanz. It took a month or two but I began to get even better. Now my life is mine again! I am still careful and guarded about protecting my joints but now I can go for a walk and open a bottle of soda.

I have been at the mercy of my Dr for Xeljanz for 8 months now. I worry everyday that I will run out cause my insurance STILL denies me. We are still fighting for approval. Either way, I am grateful for the chance to experience hair on my head again and to even shave my legs. I am grateful that I can open my soda all by myself and go for a walk. I am grateful for the 8 months of life that I have been able to experience all because of a drug. I am willing to take it for the rest of my life if I am given the opportunity. If not, it was all worth it just to have it all back for a short while.

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