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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AW:  Other discussions on Xeljanz / Tofacitinib

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

 

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Permalink Reply by Newjack on February 10, 2018 at 2:36pm

Thanks for the response. The standard dose that I am now my doctor was pretty happy with the results in the 4 weeks that I had been on it. She said we may up it to 15. We will see its only 5 weeks. 

I am waiting to hear back from xelsource to see if I can get the medication. I am getting it from copay card right now and my insurance out right denied me twice. 

Permalink Reply by James 2me on February 10, 2018 at 2:29pm

I also had a situation like the one Sadele mentions  I was on Xelljanz 2 years ago results were not  going well I decided to stop takeing Xelljanz some where around September of 2017 my doctor suggested for me to give it another Try. I know everybody is different as of now my scalp is just about at full growth. Eyebrows and lashes fully grown in. Body hair starting to come in now. I am currently takeing three 5 milligram tablets a day and will mostly drop down to two in another month. Good luck to all and stay patient and positive. 

Permalink Reply by Mashloum on February 10, 2018 at 2:42pm

it seems the Xeljanz is the only solution so far, and I am preparing to start the medication for my son (9 years), but I am searching for the doctor will be a sponsor for the case. I have a friend who his son is 12 years old and he started the medication for the last 8 months and full regrow is happening except for eyebrow and eyelash 

Advice in this regard will be appreciated, considering that he has the alopecia "AU" for the last three years

if I can have the list of lab needed before treatment, during the treatment and precautions required during the medication is given.

Permalink Reply by Return_life on February 10, 2018 at 3:31pm

Exactly.... don't know why people saw sarcasm in my previous messages. In the medical field we do call it naive patients.  Lol top doctors around the world are trying to reach me to learn about my experience.

I did first attempt xeljanz      poor success 

Second attempt xeljanz       good success 

Third attempt ruxo  ( whaaaaat)  good success

Ill probably post a pic here... been a contributor for so long. 

All the best guys

Permalink Reply by sadele on February 10, 2018 at 4:18pm

I know there is something to stopping and re-starting, and the fact that I experienced it was great for me.

Dr King had told me that those who were non-responders or incomplete responders would most likely respond well to Ruxo. It's just a matter of getting it. I wouldn't think my Dr would be able to prescribe it to me because of what it's indicated for, which I don't have, and couldn't prove to get insurance to cover it. The cost is outragoue out of pocket so it seems impossible to get it. Dr King wanted me in the Concert trial, he felt that would be a good option if I continued to be an incomplete responder to xeljanz. Luckily, I responded much better the second go around.

Permalink Reply by Frida Rupert on February 10, 2018 at 5:18pm

Ruxo!!!! Wahhh that is cool! So exciting... hope the docs can use your case to lobby for the use of ruxo (so docs and insurance pay attention) in treating alopecia! 

Keep being a trailblazer for us R2L!

Permalink Reply by Newjack on February 10, 2018 at 5:34pm

Doesn't ruxolitnib have more side effects than xeljanz? From my understanding xeljanz is relatively safe drug. 

Permalink Reply by Fab on February 9, 2018 at 5:24am

Kevin,

je ne pense pas que les douanes te feront de problème. On est plus à l'époque de midnight run ;)

Il me semble avoir vu des témoignages d'anglais ou italiens qui avaient fait le voyage en Turquie.

Au pire envoie toi les par colis à partir de la Turquie.

Je veux bien que tu nous tienne au courant.

Permalink Reply by Mashloum on February 10, 2018 at 2:32pm

it seems the Xeljanz is the only solution so far, and I am preparing to start the medication for my son (9 years), but I am searching for the doctor will be a sponsor for the case. I have a friend who his son is 12 years old and he started the medication for the last 8 months and full regrow is happening except for eyebrow and eyelash 

Advice in this regard will be appreciated, considering that he has the alopecia "AU" for the last three years

if I can have the list of lab needed before treatment, during the treatment and precautions required during the medication is given.

Permalink Reply by Carlie on February 10, 2018 at 5:53pm

I finally met a doctor that I could have a real conversation with about Alopecia. I took all the studies and research with me to my appointment so it was clear that I had done my homework. She actually knows Dr. King and all the research on Jak inhibitors. I will get the first 3 months of Xeljanz free and if I am a responder she will go to bat for me with the insurance company. She said she is having more and more success. I have been AU for 18 months, I will start an AIP diet, too and try to get the jump on the inflammation just in case I have to go off the Xel for a while after 3 month while getting the insurance to cover it or some hardship assistance. Here's the blood panel they have to have before giving me the Xel. See attachment

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Permalink Reply by Frida Rupert on February 10, 2018 at 6:33pm

Oh Carlie this is fantastic news! A great doctor makes all the difference! So happy for you!

Permalink Reply by Carlie on February 10, 2018 at 11:33pm

Thank you, it's definitely key to beating this.

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