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 Meedo on October 8, 2019 at 1:30pm

Hi mashloum. Sorry to hear of your son’s set back. From my understanding from a couple of people here is that flare ups would happen at some point and xelijanz won’t be able to completely stop the process but once the flare settles the medicine will work to bring back what’s lost . So just let the phase pass . I don’t think it will ever progress to total baldness even if it dose you know it will always come back .

Permalink Reply by Mashloum on October 8, 2019 at 2:48pm

Thank you Meedo, I am sure it is a matter of time, it seems like cycle or something has to do with his age changes since he is closed to 11 years

lets hope all the best will come for all member keeping hope in front of our eyes 

Permalink Reply by Frida Rupert on October 9, 2019 at 5:53pm

Oh Mashloum, I am so sorry you guys are going through this. I do think it will resolve. Kids are much harder to dose in my opinion as their growth impacts their metabolism and so they are up and down in terms of the dose needed to stay stable. I think he’ll come out of this flare soon but emotionally it can really scar you both, I am so hopeful we find a more permanent and predictable treatment soon, though I am very grateful to jaks for how they have advanced the treatment and understanding of this condition.

Permalink Reply by Kathy on October 8, 2019 at 2:06pm

Hi guys

I haven't been keeping up lately but seeing some people having relapses. I'm not eligible for this medicine but I have huge flare ups (about 50% loss) whenever I get a vaccine of ANY kind. Takes me 6-8 months to start growing back and then if my ferritin stays stable I'm in decent shape. I avoid them now unless absolutely necessary like new grand babies...Anyone else have that reaction? 

Permalink Reply by singh on October 9, 2019 at 7:39am

Hi Mashloum,

Sorry for your sons shedding but don’t stress too much as a lot of people on here have short set backs. The key thing is not to stress and if possible anything added take away and maybe just up the dose for a few weeks if possible. 

The good thing is you know xeljanz works for your son. 

please keep us updated and wish son a successful recovery.

Kind regards,

Singh.

Permalink Reply by Newjack on October 9, 2019 at 10:40pm

Kathy,

Are you having your setback while on Xeljanz? I just got my 3rd shot from a different doctor and its growing a lot! I had one patch come in because I missed about 3 half doses in one week.

I also had shedding because of that. I would say I am at 95% right now, I was shedding and my hair was very very layered on the sides. I avoid flue vaccines, and never really got them to begin with. Never had the flu.

Permalink Reply by Kate on October 9, 2019 at 4:48pm

Hi guys

I can see many of you see Dr. Bordone, who is in NYC. Does she work with overseas (Europe) patients (so no insurance). What would be the cost of consultation then? 

Thanks!

Permalink Reply by Ron's mom on October 9, 2019 at 5:16pm

Hi Kate

If you are in Europe, why don't you go to Italy (Bologna) and see Dr. Tosti instead? She is great and has a lot of experience. She's also involved in the clinical trials of Baricitinib at Miami Univesity, so she knows how the Jak Inhibitors work. We are also in Europe so we travel to see her 2-3 times a year for my son's alopecia.

Permalink Reply by Kate on October 10, 2019 at 2:48pm

Thanks - I wasn't aware of any doctors in Europe who would know/have experience in Jak. Do you mind sharing the contacts of the doctor or the clinic, Italy is probably easier for me to travel to:)

Permalink Reply by Ron's mom on October 11, 2019 at 3:15pm

Of course I will! Please pm me and I will send you all contact info :)

Permalink Reply by singh on October 9, 2019 at 8:51pm

Hi Kate im from the UK and went to New York and seen Dr Bordone. At the time the consultation cost me 250 USD.

Permalink Reply by Kate on October 10, 2019 at 2:46pm

Hi

Thanks, that's good to know. Are you happy with the treatment/advice? 

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