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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everyone, just wanted to share that I was able to get 10mg pills for free with the xeljanz copay card. its a $15,000 card, but it only covers copay. u can't use it to buy ur meds full price, unfortunately

this means I had to have my doctor write a prescription and then write two letters to my insurance asking for coverage. I ended up with a copay of $1700. with the $15000 copay card I have free meds for the next 8 months. hopefully that's enough time for beacon/ems to get their shit together (not crossing my fingers)  

hope this helps some of u. this whole process took about 3 weeks btw 

Anyone here experience bad stomach side effects (Vomiting) when on 20mg?

I have thrown up 3 times, felt really sick another time, and feeling sick again (just threw up last week) in a 7 month span when I have been off and on 20mg.

I am good on 10 and even 15mg, but very little to no growth

Message me if you do, I always forget to check back here, thank you guys

I finally heard from Mouree today. She said that EMS will begin shipping on July 15, and I will get my meds soon. Of course, she thought they would start shipping in May and then June. I just hope this newest email is correct.

Will I get an email before Beacon ships my meds, or will they just show up?

Canadians who buy from Beacon: (asking for a friend)

1. Do you need a prescription to order tofacinix?

2. What is the protocol for getting the shipment through Canadian customs?

Appreciate any help you can give - thank you so much!

How do you live with universal alopecia? I am always rejected by women and they all tell me except me ... it is really heavy to live with this cross .. what are you doing .. it is honestly how long it will take xelianz or tonifanix to give me back life ... in your opinion I leave on August 1st. a word of comfort only you can understand me

How do you live with universal alopecia?
I am always rejected by women and they all tell me except me ...
it is really heavy to live with this cross .. what are you doing ..
it is honestly how long it will take xelianz or tonifanix to give me back life ... in your opinion I leave on August 1st. a word of comfort only you can understand me

Hey everyone,

I am looking for some advice. I reduced Tofa dose in July (cut one morning pill per week) and I discovered a spot today. I was AU, full regrowth on Tofa. I am considering one of the following solutions: 

1) stay on my current dose and wait;

2) increase Tofa dose. How much????

3) try Prednisone pulse.

Any suggestions, please!

Hi Nat, I would panic and ask my derm to give me a shot of kenolog immediately, followed by some prednisone pills. It's taken almost 2 years to grow my almost shoulder length locks back, and I will do anything not to have to start over. I would cut the pill once every 2 weeks, for 3 months first.  Don;t mess around.

Thank you Carlie! I am thinking about Prednisone - I have some. I don't go to local derm as they know nothing about AU.

Hi Nat, I’d see if you can get a steroid shot in the spot and consider going back up to the pre July dose and waiting until the spot fills and then reduce very very slowly after. One spot I think will be fine, and it does happen even on higher doses, it never seems to go back to the baseline prior to treatment. It’s really traumatic for us all though - we all have ptsd from this condition so understand if you want to steroid pulse etc.

Thank you Frida! I am terrified. My hair now is thicker than I have ever had before. I am thinking about Prednisone pulse.

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