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 singh on July 3, 2020 at 5:49pm

Hi Carlie, 

Yes it was but once in the UK parcelforce take over once it’s release from customs.

I also ask for tracking number as soon as my order has been sent off from Beacon.

Permalink Reply by Carlie on July 6, 2020 at 1:49pm

I've never a problem with EMS. For two years my shipments from Ujwala and Beacon have arrived unopened and on schedule. DHL Express has been holding my parcel in customs since June 28th. Today I received an email that it needs to go through FDA clearance. It really pisses me off! It's such a racket here with the FDA, it's all about the money for them and they couldn't care less about the health of the citizens. I'm so angry right now, that they have the power to stop me from getting a much needed, non narcotic medication for personal use, from another country. No wonder people who have terminal illnesses die.

Permalink Reply by Football fan on July 6, 2020 at 6:06pm

When I first started xeljanz 4 years ago it cost 2,100 at Walmart with the Good Rx card.Now I saw it for 4,600.Why did it get so expensive.I made an appointment with my Dermatologist for next week to see if she could help me.Looks like even if EMS starts back up tomorrow it will probably take 6 weeks to get our medication.Were screwed because in L.A. their closing everything down that they just opened a few weeks ago.I hope you get your medication carlie.

Permalink Reply by Carlie on July 6, 2020 at 6:24pm

Hi Football fan. Yes, it's infuriating. I am attaching the invoice from my Walgreens order. The price is 5800 for 60 tabs. They are sending me another bottle tomorrow, so hopefully that will hold me over until my India order clears customs.

Attachments:
Permalink Reply by inggare on July 6, 2020 at 6:35pm

Good morning, everyone,

do you have an explanation why there's such a price difference between tofacinix and xiljanz????

Permalink Reply by Carlie on July 6, 2020 at 7:00pm

Because Pfizer has the patent on Xeljanz and there is not a generic version available in the US or Canada. Pfizer tried to stop the production of the exact same medication under different names in India and failed. Several of the people on this site have had the generic version tested and found it to be a little less than 5mg. But it is possible that the xeljanz is not exactly 5mg either.

Permalink Reply by Carlie on July 6, 2020 at 6:33pm

Ask your dermatologist about this program. Maybe they have a similar program at UCLA. https://www.ucsfhealth.org/about/our-340b-story

Permalink Reply by Carlie on July 8, 2020 at 5:45pm

Finally got a notice that my parcel was released from customs and on hold for $87.00 duty taxes.

Permalink Reply by Ahmed on July 7, 2020 at 12:02am

Hey everyone! Could someone provide me the contact information for ordering from Beacon? Also has anyone ordered to the US recently? If so, are there any known issues with customs or receiving the delivery?

Permalink Reply by Carlie on July 7, 2020 at 11:25am

Hi Ahmed,

I have sent several emails to Mouree at Beacon, that seems to be the point of contact there but I have not heard from them. I have another contact but he is a little more expensive. Scroll through my posts and you will find information on price, contact etc. EMS is the only way I would ship to the US, Dhl is expensive and they will hold your package in customs for regulatory review so you will need documentation. That is is another one of my posts from last week. 

Permalink Reply by Manman on July 10, 2020 at 1:48pm

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 

Permalink Reply by nzahir on July 10, 2020 at 4:23pm

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

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