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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Permalink Reply by Life_sucks_with_alopecia on July 30, 2015 at 2:37pm
Hiya everyone.

Well I haven't been on here for a while as I've been pursuing on finding Xeljanz at a cheaper price and I have succeeded.

So during my last check up with Dr.King in June, he made me aware that other countries whereby Xeljanz is approved and the cost of it is slightly cheaper than the US. One of those places he mentioned was Turkey.

So after scouring the net to find pharmacies in Turkey that stock Xeljanz I found one. I went there last week in person to ensure that it was a legitimate pharmacy (which it was) and managed to purchase a box of 56 for €600 (in today's exchange rate that is $655 or £420). I went to the city of Antalya.

The pills look the same in size and appearance. The pharmacist said that it is only available in larger towns such as Istanbul etc. As Dr.King told me to up my dosage to 3 pills a day, I managed to get 3 boxes for the price of £1200. Cheaper than buying anywhere else.

But there are a few things you need to be aware of:

*Turkey has no formal agreement with the US to accept American prescriptions, but they do want to see it to see that you are required to take the medication. It also helps if you get stopped by customs/passport control to have your prescription.

*There is a government law which permits Turkish pharmacies to send medication abroad, so if you were thinking of getting it shipped over you will more than likely get refused. I tried with the pharmacy and with various shipping companies and they all said the same thing. So you will have to go to Turkey and collect in person.

*They take around 1-2 days to come in if they don't have in stock. I have attached the details of the pharmacy (eczane) but unfortunately they don't have an email or website. Just a telephone number. Their English is poor and I had to write everything down and use Google Translate to get across my point. So if you know anyone who can speak Turkish it will help you a long way as I did before I flew out there.

I know this may not be that helpful to some of you across the pond in the US but it's good to know should you be able to get a flight or know someone who might be travelling there.

I will notify Dr.King so that he can make others aware who travel from Europe or the middle east. Hopefully Dr. King may have more information from others patients of other places to get Xeljanz at a cheaper rate.
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Permalink Reply by singh on July 30, 2015 at 2:53pm
That's amazing thanks for the info LSWA! Could you please keep us updated on your progress with the xeljanz you have bought? And could you post a pic of the box or is it the same box as US sell? And how is your growth so far mate?
Permalink Reply by Seahawks Dad on July 30, 2015 at 4:19pm

Thank you very much for helping all of us...has anyone had any luck with any Canadian Pharmacies? 

Permalink Reply by Life_sucks_with_alopecia on July 30, 2015 at 3:20pm
I have attached a pic of the box from Turkey.

My progress has been slow on the 2 pills a day hence Dr.King telling me to increase the dosage to 3 alongside the Prednisolne.

Dr. King said I have some fine hair on my scalp and on .y eyebrows but it's not as successful as some others on the site. I've just completed 3mths on the 2 pills and will start the 3 pills this weekend. I really hope this kick starts things for me as I don't want to lose hope.
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Permalink Reply by singh on July 30, 2015 at 4:12pm
Thanks mate! And Yeh man don't lose hope! Hopefully it will work! Am looking to start soon and I have suffered with AA for 18 years then now last few months gone AU. So I think will need more than 3 months and probly 3 pills a day too. All the best and keep us updated :)
Permalink Reply by HS on July 30, 2015 at 4:20pm

I started Xeljanz on July 2nd and I have vellus hairs all over my head!!! I take 10 mg per day. A few days ago I noticed light eyelashes on both my top and bottom lids too!

I have hair in my nose, all over my face, a few eyebrows, I've seen a few hairs on my arms. It's definitely growing and it's VERY exciting!

 

Permalink Reply by singh on July 30, 2015 at 5:31pm
That's amazing heather! May I ask how long you have had Alopecia for? And what sort of alopecia?
Permalink Reply by AlopeciaDestroyedMyLife on July 30, 2015 at 8:21pm

I've been taking Xeljanz I got in Turkey for about 2 months now. My boxes are exactly the same as LSWA's .

I noticed hairs are coming out with no bulb which may just be normal shed but it did start when I started taking the Xeljanz tablets I got from Turkey. As a whole I haven't noticed any significant loss and it looks no different.

I went for a scalp massage 2 weeks ago and must have lost about 90 hairs which scared the life out of me. I am currently in contact with Pfizer who have asked me to provide a sample . Will let you all know what the results are .  

What may also play a role is that I have stopped taking the Minoxidil which has been known to cause shedding if stopped. Recently I have been losing less hairs daily (around 30)

I've been having some paranoid phases this month but I will post new pics shortly.

Permalink Reply by TM23 on August 1, 2015 at 12:21am

Same thing happened to me earlier. My pattern baldness triggered due to head massage. Had worst experience of my life - Spa staff gave me dry head massage and I lost more than 100 hair since then I started loosing hair :(

Permalink Reply by Scott on August 3, 2015 at 5:48pm

Hi ADML

Thank you for posting about your experience in regards to purchasing Xeljanz from Turkey. I will be interested to hear what Pfizer have to say about the sample you provided.

I live in the UK and asked a Turkish friend who lives over here to contact a few of the main pharmacies in Istanbul and inquire if Xeljanz was available, but none of the pharmacies could find information on it.

Permalink Reply by HS on July 30, 2015 at 8:27pm
I have AU since 1999. Prior to that I har AA for 25 years.
Permalink Reply by singh on July 30, 2015 at 9:24pm
Thank you ha! Look forward to your updates!:)

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