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 Lindzzej on February 19, 2015 at 12:46pm
Thats really great, im going to do that! They didnt make you specify on the form what its being used for?
Permalink Reply by Tamer on February 19, 2015 at 5:13pm
It was a very brief application. See for yourself it's very easy to do online!
Permalink Reply by Imran on February 20, 2015 at 11:56am
Is this co-pay option available in Canada? Thanks,
Permalink Reply by Tamer on February 21, 2015 at 2:13pm

Unfortunately not. 

Here are the terms and conditions straight from the website: 

  • The Card is not valid for prescriptions that are eligible to be reimbursed, in whole or in part, by Medicaid, Medicare, or other federal or state healthcare programs (including any state prescription drug assistance programs and the Government Health Insurance Plan, available in Puerto Rico formerly known as “La Reforma de Salud”).
  • The Card is not valid for prescriptions that are eligible to be reimbursed by private insurance plans or other health or pharmacy benefit programs that reimburse you for the entire cost of your prescription drugs.
  • You will receive a maximum benefit of $8,000 per calendar year, which is defined by the date of enrollment through December 31st of the enrollment year, with a $0 per month co-pay. After a maximum of $8,000, you will be responsible for paying the remaining monthly out-of-pocket costs.
  • The Card may be used once per month for the life of the program.
  • You must deduct the value received under this program from any reimbursement request submitted to your insurance plan, either directly by you or on your behalf.
  • Cannot be combined with any other rebate/coupon, free trial, or similar offer for the specified prescription.
  • The Card will be accepted only at participating pharmacies. The Card is not health insurance.

Offer good only in the U.S. and Puerto Rico. The Card is limited to 1 per person during this offering period and is not transferable.

Permalink Reply by gowml on February 22, 2015 at 1:57pm

Tamer, did you have a Xeljanz prescription from your dermatologist that you submitted to your pharmacy along with your copay card? I can't image they would dispatch the drug simply based on the copay card without your name on it. Which pharmacy did you use? I understand one has to go through specialty pharmacy to get Xeljanz.

Permalink Reply by Tamer on March 2, 2015 at 5:36am
My dermatologist had sent the prescription to the specialty pharmacy of his choosing (didn't matter to me because they shipped the medication to me). They ran my insurance and other information, then contacted me letting me know that insurance didn't cover me for this drug. I gave them all of my information to verify my identity, then gave them the copay card information (over the phone). A copay card isn't the same as an insurance card, it doesn't have your name and such on it, it's more like a coupon. So I simply read them the BIN # and ID# off the card and just like that, I was set.

I used CVS Caremark.
Permalink Reply by skip on April 7, 2015 at 7:38pm

Hey there... Did you check that you were currently on Xeljanz on the second step of registration?  I don't want to screw this up.  :)   Thanks!

Permalink Reply by Nick Barlulis on February 20, 2015 at 12:56pm

Hi Tanner great news for you I hope you have great success. What happens in 4 months when you blow through the 8k. Will Pfizer issue another card?

Permalink Reply by Tamer on February 21, 2015 at 2:09pm

Thank you!

They cover up to $8k per-year. So the next time I can reapply for another card will be January 1st 2016. A lot of rheumatologists give out 1-2 free samples of Xeljanz, however, with each lasting 2 weeks. So if I still need the medication after 3 months, I will get my 4th month free from a rheumalogist friend of my dermatologist.  

Permalink Reply by Lindzzej on February 22, 2015 at 7:12pm

Tamer, one of the questions on the app asks if you what meds you have been on for RA and one of the answers is nothing, is that what you selected?  

Permalink Reply by Tamer on March 2, 2015 at 5:14am
Sorry for responding so late. I think I chose the nothing option. Either that, or I chose the drug that started with "M." If I saw the exact question I would remember. I can't access it on my iPhone however, so it'll have to wait until later.
Permalink Reply by roxy on February 21, 2015 at 3:28pm
I live in South Africa :( not going to be that lucky.

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