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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Replies to This Discussion

Permalink Reply by Frrankie on April 5, 2017 at 12:06pm
My doctor wrote the script. Kiaser derm.
Permalink Reply by Frrankie on April 4, 2017 at 7:11pm
Thanks for the reply. Good to hear a response is possible after so many years. I just started so I will post progress when or if it occurs.
Permalink Reply by Jcortez05 on April 4, 2017 at 8:17pm
Has anyone heard from Katiegirl? I wonder how her hair is coming along while pregnant and off of xeljanz ...
Permalink Reply by Patchesforlife on April 4, 2017 at 8:55pm
Did she have universalis before being pregnant?
Permalink Reply by mastros on April 5, 2017 at 12:37pm

Hi all. I do have AA in my scalp, beard, body and I am really interested into getting a doctor that can monitor me and provide Ruxolitinib or Tofacitinib.

To my understanding, the only three doctors I found from the thread are:

  • Lindsey A. Bordone
  • Brett Andrew King
  • Natasha Mesinkovska

Any other doctors? Do these doctors accept patients or do you have to be in a clinical trial to get either Jakavi (Jakafi) or Xeljanz? Also, anyone having experience being from Europe and being a patient of these doctors?

Moreover, I compiled a list of possible pharmacies in Istanbul that could provide Xeljanz. Which is the most trusted one? How many boxes are you allowed to carry from Turkey? 

====== List of pharmacies in Istanbul that people have mentioned that they provide Xeljanz========

AYASOFYA ECZANESİ
(0212) 513 72 15 - 16
www.ayasofyaeczanesi.com
DİVANYOLU CAD. NO:26 / B / SULTANAHMET
Alemdar Mh., 34110 Istanbu


Rebul 1895 ,Pharmacy ( this is the pharmacies name)
Isticklal Cadessi Meselik Sokak NO: 3/B (street)
Beyoglu- Istanbul (part of Istanbul, sector)
+90 212 2436936 (pharmacy)
+90 542 2793201 (pharmacist Kerim his mobilnumber)
www.rebul1895eczane.com
Kerim Müderrisoglu
(Fransız Konsolosluğu Karşısı) No:3-B
Beyoğlu - İstanbul
Telefon: 444 12 58 ,
0212 243 69 36 , 0212 251 31 42
Mobil: 0530 902 51 91
rebuleczanesi@hotmail.com
https://www.rebuleczanesi.com/
https://www.facebook.com/pg/rebuleczanesi/about/?ref=page_internal


Barbaros Bulvar
Cihannuma Mahallesi, Barbaros Bulvari, 47, Besiktas, Istanbul
+90 (212) 327-85-48
02123278549

BERİN ECZANESİ
02125423994
Kartaltepe Mahallesi Muradım Sokak 1/a Kartaltepe


FULYA Eczanesi
Teşvikiye Caddesi, İsmet Apartmanı, No 131/A, Nişantaşı
Istanbul, Turkey
+90 212 241 12 62
fulyaecz@yahoo.com

KONAK ECZANESİ
(0212) 240 68 52
CUMHURİYET CAD. NO:77 / A / ELMADAĞ


ONUR ECZANESİ
VALİ KONAĞI CAD. BÜYÜKÇİFTLİK SOK. NO:6 / NİŞANTAŞI
ŞİŞLİ / İSTANBUL
Şirket Adı : ONUR ECZANESİ
Telefon numarası : (0212) 247 57 39
VALİ KONAĞI CAD. BÜYÜKÇİFTLİK SOK. NO:6 / NİŞANTAŞI

Permalink Reply by Mashloum on May 4, 2017 at 6:35am

Hi Temis, how much the price in Turkey?

Permalink Reply by Knightsfan212 on April 5, 2017 at 3:20pm

Hi everyone,

I've been on Xeljanz now exactly a month, and at about 3 weeks I began noticing peach fuzz in 2 patches on my head. Nothing else yet, but I am hopeful that I am on my way to regrowth. I have been AU for 3 years now, and these are the first hairs I have had since 2014. 

Permalink Reply by Alo-mom on April 7, 2017 at 10:57am

Daughter had AU for 5 years and she has been on Xelijanz for 6 months and has full regrowth on her head, most of her brows and eyelash, however eyelashes are not like they were before AA. When I say full regrowth I am saying that her head is covered with dark hair but has not become long hair. Sort of like a new born baby that has lots of dark hair covering the head. She has not had any bad reactions and her blood work has come back good so far. Lets hope that cuts to the NIH for research does not effect our path to finding the cure. As it seems the defense budget is where the money is going in this administration. We should all be contacting our legislators and tell them to not cut research funds. We have come far and if funds are cut we may never see a cure. 

Permalink Reply by Mashloum on April 7, 2017 at 5:10pm

that;s a good news, I am praying for her to have the full recovery soon, just keep yourself optimistic 

Permalink Reply by Alop88 on April 5, 2017 at 4:26pm

Hi all, 

Wanted to give an update on my progress. Been on Xeljanz (2 a day) for about 3 and a half weeks there's small peach fuzz everywhere on my head but I had some before I started (not as much) so I don't know how much of it is new. There's quite a few small black hairs growing on each eyebrows in different parts (mostly on the outer edge of the eyebrows) and a few long black eyelashes growing as well.

I don't know if this means I'm on my way to full regrowth as its very little growth but as someone who's had AU for 15 years I do feel a bit optimistic that theres something happening!

Permalink Reply by Patchesforlife on April 5, 2017 at 6:47pm
Best of luck!
Permalink Reply by Return_life on April 5, 2017 at 7:32pm
ur on the good path. just be patient because having a decent density and full color could take some time after 15 years of AU.
stay strong buddy

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