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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Hello NYGuy,I just received my notification from DHL express, with my tracking number and date of delivery to be July 1. My source, who is a little more expensive than Beacon but worth keeping because he always responds to my emails in the same day. He was able to send it yesterday 6/23. I live in California. Here's his information Ujwala <ujwalapharmaceutical81@gmail.com> I get the bottles of Tofacent. 

My Dr. from UCSF is trying to get me meds from their discount pharmacy, $16 for a bottle of Xeljanz  5mg 60tabs. Not for me for a month as I take 120 tabs, but it's for sure enough to get me by, but it would still be great! You must be a UCSF patient. But I bet there are similar discount pharmacies out there at other hospitals that have the specialty programs.

Hi, everyone.


This is my first post. I have read through about 300 pages of this thread. Sorry for my long post but I have so many questions.

Until I discovered this website, I had no idea that we’re even close to something that looks like a decent treatment for AU. I have had AU for about 7 seven years and I am 22 years old today, my AA developed to AU in about 40 days if I recall me correctly. I have never really tried to get treatment for this and I have only met two derms in my whole life, who gave me the classic ‘’it is just hair’’. I have tried PRP two years ago with no success and currently, I am on Minoxidil since a month back. Before starting Minoxidil I was noticing that I got ‘’beard hair’’ coming out on the sides. Now, 1 month with Minoxidil I have around 5-10 eyelashes on each eye and a couple of hairs (like 10 in total) growing out of my head. The couple of straws of hair on my head is black and long (I had black hair before all this). I am no expert by any means but it feels positive that at least the few straws of hair growing out is ''healthy''?

However, reading more close on this disease I highly suspect that Minoxidil won’t to the whole trick (frankly, I would be happy to just get my eyebrows and eyelashes back) Anyways, I have read through this thread and I am willing to try Xeljanz. But I suspect it is far down the road for me. See, I live in Sweden, and I think we are far more strict about prescriptions and ordering meds from other countries, then, let’s say the USA.

As I said, I am 22 years old and I am still in college, so I cannot afford the option from Turkey, the ones from Bangladesh and India would be no problem financially but I suspect I won’t be able to import it legally. I have tried to read the laws regarding this and in Sweden, you can only legally import it if it’s from another EU country and if you have a prescription of it. This is my other concern, I suspect I will not get a prescription since we have very few experts and derms who know about Xeljanz here in Sweden and our health care is run by the state and not privately. I plan on going to a derm this week again, I do not know what to say but I will try to get a more decent answer this time.

I would not care if every once in a while, the shipment got taken by customs but it would be a big no-no for me if I risk doing a crime and getting an offense importing this. If there is anyone from EU or even better, Sweden here that orders Xeljanz I would be so happy to hear from you how you doing when ordering.

I have also had a few questions I would be delighted if you that take Xeljanz would answer:

-Has anyone managed to go off Xeljanz after getting their hair back?

-Do you have a backup plan if these pharmacies from Bangladesh or India would stop existing? This is a big fear of mine.

-Can I as a non-American citizen come to America to get a more specialized Derm and maybe even get a prescription there?

-Can you take your Xeljanz with you when you are traveling without any problems?

 

Lastly, my biggest question is: do you think Xeljanz is the only way for me with AU (and as good as no head in my head), or is it other treatments that can help me get my hair back?

Hi marvpb. Welcome to the group . I’m glad you came across this group as it has helped all of us . It’s good that you have signs of regrowth at this point and with xelijanz I’m sure it will start all coming in . It’s almost impossible to have a spontaneous remission and if you do it most likely will fall out shortly after . Minoxidil won’t trigger the hair to come out but once the follicle decides to produce hair the minoxidil will speed it up . You must want to have your hair back because you will struggle abit to find a doctor that supports and understand what you want to achieve . You are only 22 and you should want your hair back . Even if you don’t care you want to atleast regrow it once because the longer you leave it without treatment the harder it will become to regrow it ever again . Once you have regrown it and let’s say you stopped taking medication for whatever reason your clock will start again and in the near future we might have a steady medication in all countries and by that time it won’t be late for you . Find a way to get the medication even if you have to make a trip to Bangladesh and bring some with you or better find a dr to prescribe it for you . Good luck I hope someone else answer your other questions 

Hi Meedo,

First of all, thank you for your encouraging words and for making it clear how Minoxidil most likely will play out for me. You are absolutely right, I will do anything in my power to get it. I will meet a derm next Monday and look at my options afterwards, but I am determined to get it and try.

To answer your questions, I don't know of anyone who is AT or AU successfully going off of the medication. It's not as if you will have a bad hair day if you try and it doesn't work out. 

My back up plan is to start ordering as much as I can afford from as many sources as possible. Right now the only source I have that kept in touch and responded to my every email is Ujwala <ujwalapharmaceutical81@gmail.com>. I have ordered from Beacon, but they have been unresponsive. 

If you could, somehow, get a referral to see a specialist at UCSF, you would have access to Xeljanz at a discounted price. My Dr. was able to get me this 2 days before I was out of meds. see attachment.

Attachments:

Hi Carlie,

How much your source?

Quantity .

Address with zipcode.
As Tofacent 5mg price is 115$ for 60tab.
Shipping cost is 35$ ems
DHL is 113$
Payment mode will be 
Western union 
Moneygram
PayPal 
Transfer wise 

Thank you!

Thanks for your answers Carlie, I must say I have been following your posts and it is very inspiring to see how successful your treatment has been.

I have been thinking about going to the states to visit a specialist. Would I still be able to get the Xeljanz at a discounted price even though I am not a U.S Citizen? 

I don't think it would be worth it for a two week supply, and the reason I say 2 week is because I take 120 5mg a month and the bottle is only 60. But for me, if I can get that every month and continue getting it from India, I can stock pile. If you cant' find a doctor  willing to treat you with Dr. Kings protocol, then you should try to find one in another country. You might even be able to do a zoom appointment. When I first realized I needed this medication I went to Mexico City and bought it, $900.00 a bottle of 60, still very expensive but at $5800.00 a bottle of 60 here in the USA, that was a deal.

I also have problems with customs, I am Italian, I order Tofacinix and have it shipped to France, or England, after I ship it to Italy.
if you don't have relatives living in these states, there are companies that you can have virtual addresses in, try looking on the internet.
good luck

Can you legally ship Tofacinix to England?
Do you need any prescription?

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