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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hi frida i am glad you are doing well how is your health?
at the end of october i switched to baricitinib because with xeljanz i did not have a good response from the hair my dermatologist will prescribe it i would be covered by health insurance.

baricitinib has a half-life of 12:30
xeljanz 3:30

Here's another source that came recommended from someone on here. I will order from these guys because they have the generic. This is the email I received from them.

Dear Carlene Ferrero,

You have received a reply from Hardik Akbari, Aspar Pharmaceuticals regarding Tofacitinib Tablets, Finished Product, Non prescription

Message
Brand: Xeljanz 5mg Tablet
Drug Name: Tofacitinib 5mg
Company: Pfizer LTD
Packing: 60 Tablets
Price: $380 per pack of 60 Tablets.


Brand : Tofaxen 5 Tablet
Drug Name : Tofacitinib 5mg tablet
Company : Everest Pharma
Packing : 60 Tablets
Price : $58 for one pack of 60 tablets

Mode of payment : Wire Transfer / WesternUnion / MoneyGram / Paypal.
Mode Of Shipping : EMS / RMS / UPS / DHL
Contact : aspar.pharmaceuticals@gmail.com
WhatsApp / Viber / WeChat / IMO / Telegram / iMessage : +918000458539
How do you live with universal alopecia? I have been afflicted for 13 years, I paid for adolescence and the Aime girls discard me because I have tattooed eyebrows and a painted pigmentation head ... you at what age did you have it and how did you manage the relationship with women? and what would you do if all of them, considering I live where they have small brains, not in the united states, if they don't even want to have a coffee because they make sense or don't excite them? xelianz can help me do you think I'm desperate and depressed .. write me if you have a pinch of heart.

Hello guy. Could someone please answer this ! I’m currently taking beacon 5 mg x 4 pills a day I’m thinking to switch to the 11 mg xr version and I wonder if it’s safe to do the 11 xr twice day , or perhaps someone already does it with no problems ? Any advice will be very much appreciated , thanks 

Does anyone have experience of tofacitinib for kids, 

My son is 12 years old.has alopecia Universalis. His Dermatologist 

Decided to start tofacitinib, as my son is suffering a lot emotionally. 

Do you have similar experience? 

Hi Sara 

I am in the same situation as you.

 I have got my daughter nearly 11 years old .

finaly I found a doctor to prescribe xeljanz for here and I already started 10 days ago so far so good.

 I don’t know what is going to happen latter on she is in 10 mg a day 

I am really scared but I didn’t have any other choice 

I ve tried everything but nothing worked for here I.

 I wish you good luck

Hi Sara, yes their are a few who have used Tofacitinib on kids, most have similar success to adults and generally tolerate the medication well, the only thing I have noticed is that dosing is a bit unpredictable with kids and the results are a tad less predictable in pre puberty. I think this is due to a number of factors - namely hormones and metabolism in kids is always changing, and both play a role in getting a the correct dose. Also without treatment that age group already seem to be harder to treat, traditional treatments have all struggled on kids, whereas kids who have gone through puberty at onset seem to respond more like adults. That said, if my kids got Alopecia I would be putting them onto the jam inhibitors, that way, even if success is a bit up and down, you are keeping the follicles from miniaturising and allowing better success if they choose to go the treatment route when they do grow up. I notice there is another Frida on here now! Ha, it’s a pretty cool name!

Has anyone heard when India will resume shipping to the USA?

My source is now telling me June 26th. 

I just wanted to post some progress for my son who is now 20. He has been on Xeljanz for about 2 years now and he has had great success. Before Xeljanz he was getting injections that chased the bald spots to different parts of his head and he eventually lost his eyebrows. I tried to get Xeljanz covered by Aetna but all 3 appeals were rejected. Luckily Pfizer covered him via the Xelsource program so the medication didn't cost me anything. Andrew has reduced his dosage from 4 tabs per day down to 2. He may need to go back to 3 as we are monitoring his eyebrows. 

No side effects and we feel lucky that it has worked so well for him. The only downside is that my employer switched from Aetna to Cigna (ExpressScripts) a few months ago so now I am back to the rejection/appeal process. I am about to do my first appeal this week so we will see how it goes. We are using Dr Bordone from Columbia in NYC. 

Here is a before / after photo: left side is from 2018. 

Attachments:

Hi PJSuss,

Thats amazing for your son! I am really happy he found success with Xeljanz. Can I ask if he always started at 4 pills per day or if he started at a lower dose, how long did you wait to go up to 20 mg/4 pills per day? I am currently 21 and 2.5 months in on Xeljanz at 10mg/day and am thinking of increasing to 20 mg. Also, after how long of regrowth did you decide to go back down to 2?

thanks,

Ariel

I'll have to go back to my notes to see how long before we changed the dosage. He started on 15mg (2 x 5mg in the morning 1 x 5mg at night) I believe this was 3 months, we then went to 20 mg / day and he really improved. After about 9 months at 20mg we scaled it back to 15mg and for the past 4 months at 10mg. I think he will need to go back to 15mg, but we are monitoring his eyebrows. He responded rapidly so I would say it was somewhere around that 13-14 month mark where we went from 20mg down to 15mg.

My wife is concerned about the long-term potential of liver problems so we were pretty aggressive about trying to reduce the dosage. He wasn't having problems and his liver tests were fine, just being cautious. I have no issue with him going back up to 15mg if needed. I should have taken some pictures just before the reduction so we could have better measured the impact of going to 10mg.. I would recommend that.

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