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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Related Post on Alopecia World:  

Xeljanz / Tofacitinib

Olumiant

Jak Inhibitors

 

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Replies to This Discussion

Permalink Reply by Carlie on May 11, 2020 at 4:05pm

Hi everyone, I just tried to quick order on the Beacon website and they are shut down until further notice. I have about a 30 day supply left, I will try lowering my does to 15mg once every other day. Does anyone have any recommendations? I guess I will try getting the trial order from Pfizer, if they are still doing that.  Moura has not been responding to my emails.  

Permalink Reply by Djp on May 12, 2020 at 4:50pm

Thank you for the update. Hate to hear this. 

Permalink Reply by Carlie on May 13, 2020 at 5:09pm

Have any of you used IndiaMART?  Today they sent me a list of providers and one has reached out. Here's what they sent me:

Dear Esteemed Customer,
Thank you for contacting us. It is our constant endeavor to provide you with the best quality service you deserve.
Here are the price and details of the product(s) you inquired about.

Brand name: Tofanib
Generic: Tofacitinib
Strength: 5mg
Form: Tablet
Packing: Pack of 30 Tablets
Unit Price: US $47.99
Kindly reconfirm your order quantity and delivery address to proceed

Shipping charge: Will be determined by the order quantity and location, Kindly reconfirm your order quantity and your delivery address
Delivery: 2/4 days for regular delivery without custom duty charges, 100% secure and save delivery.

We await your response as soon as possible.
 
Thanks,
Venkat Pharma
Any advice?
Permalink Reply by lu391 on May 13, 2020 at 6:13pm

indiamart does not have nice reviews on the internet, I in india bought the generic of xeljanz the name is Tofaxen, the pharmacy I used is called Aspar, always an online pharmacy from india, tofaxen bought it to have an alternative to Tofacinix, because beacon it is not fast in shipping

Permalink Reply by Frida Rupert on May 13, 2020 at 9:30pm

Hi Carlie, I have had success with India mart but also failures. For the most part it’s come through fine, but I tend to think Beacon is the best option as their meds are tested and they have a history of success. I think you can look at reviews on IndiaMART, and google the address of the Pharma company and perhaps do a Whois on any website linked to the company to verify ownership and location. It’s a bit like a slightly less reliable version of eBay....

Permalink Reply by Carlie on May 13, 2020 at 9:48pm

Thanks Frida, that's what I figured. I might give them a shot. I received Tofanib from one of my other sources. I will wait another week, but it sounds like the lockdown in India might be extended.

Permalink Reply by Carlie on May 15, 2020 at 12:05am

I did get a response from Venkat Pharma and it sounds like they are shipping. I did a little research and they look reputable. I will order 10 boxes and take a chance. I will keep you posted. It's always good to have several sources.

Permalink Reply by bibby on May 15, 2020 at 9:22am

Hi Charlie. How much do venkat charge per box ? 

Permalink Reply by Carlie on May 15, 2020 at 11:12am

$47.00 for a box of 30.

Permalink Reply by Carlie on May 18, 2020 at 1:15pm

Venkatpharma2@gmail.com, the reply said they are shipping as an essential business. 

Permalink Reply by Merry on May 29, 2020 at 12:18pm

Thank you!

Permalink Reply by Merry on May 15, 2020 at 12:40pm

I would be interested in ordering from Venkat Pharma also since Beacon still seems to be at a stand still. Can you please share the process you followed to order?Thank you so much!

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