AlopeciaDestroyedMyLife
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AlopeciaDestroyedMyLife's Discussions

Xeljanz (Tofacitinib Citrate): My experience on the trial

Started this discussion. Last reply by Frida Rupert on Sunday. 7868 Replies

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…Continue

Tags: xeljanz, trials, treatment, tofacitnib, citrate

Got dumped because of my alopecia

Started this discussion. Last reply by Stars-r-Aligned Jun 23, 2016. 39 Replies

I had another alopecia episode and my eyebrows fell out again. This has had a dramatic impact on my appearance. I was scared to tell my then girlfriend but eventually plucked up the courage to tell…Continue

I can't take it anymore

Started this discussion. Last reply by Rose Marie' Jul 3, 2014. 6 Replies

I have pretty no hair anywhere my only pride and joy were my eyebrows which grew back after steroid injections 2 years ago with full regrowth in 2 weeks. In the past few months they have all fallen…Continue

Please bring back chatrooms (disappeared with no explanation)

Started this discussion. Last reply by AlopeciaDestroyedMyLife Jul 6, 2014. 3 Replies

Alopecia World please bring back chatrooms there are no alopecia chatrooms anywhere on the internet. Chatrooms are the best support someone can get online as its in real time. Bring them back please.Continue

 

AlopeciaDestroyedMyLife's Page

Latest Activity

Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Mine came back curly too! I’m having to learn how to style it in ways I’d never had to before. But it’s thick and I’m so grateful. Totally understand the anxiety - but I found with myself the longer I had the hair the less…"
Sunday
Sad_Rapunzel replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"At least it's back.. And it's curly, and shakeable :)  You are happy. But. I still can't understand destiny. Why? You supposed to live with this fear forever. Why you? Why we? What kind of lesson is it? Are we so sinful, are we…"
Sunday
mtran2000 replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Carlie are you on Xeljanz?"
Sunday
Sad_Rapunzel replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thank you for your reply  I have an appointment on Monday with yet another dermatologist, so i will let you know what she thinks... Because my previous doctor insist on biopsy only and still telling me that Rogaine is the only one…"
Sunday
Carlie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Nice head of hair and eyebrows too! I completely understand your fears. My hair is coming in curly and thick. I'm constantly shaking it to see if any falls out!I I remember telling my girlfriend that if my hair grew back I would be the happiest…"
Sunday
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Kevin, sorry i I missed this post. Baricitinib May help but be vigilant in looking after yourself as not as much testing has been done on it, but as it targets Jak 2 which seems to be a very strong pathway in alopecia than it could be helpful,…"
Saturday
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Sad Rapunzel, New Jacks hair is lovely you are very right but he actually went AU, so no hair, before he got treatment and had a great outcome.  These are the results of treating the condition, not all achieve 100% regrowth but many do. His…"
Saturday
Sad_Rapunzel replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Dear Boy! (sorry, but with THIS HAIR you must be really young teen :) )  Are you kiddin'? It's like slap in the face in this rainy saturday morning. You have gorgeous hair! And you are so right if you start notice thinning and same…"
Saturday
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Looking good NewJack!"
Friday
Rascalx2 replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Damn newjack! Its thick good for you! Mine came back but never the thickness it was before going au... i have spots come and go because i go up and down w dose but just got haircut today, never go to short in back because of the smotth bald spots…"
Thursday
Newjack replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"No I'm taking brand ."
Thursday
Ahmed replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thanks for sharing! I also have AU and just visited her this past Monday. On my third day of taking Tobacitinib, she started me off on 15mg. Hope to share my progress here."
Thursday
sultan h replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Mr NewJack are you still taking Tofacinix? "
Thursday
Newjack replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I was AU, my beard was on the way out, and so was my eye brows . I had patches on my legs too and no hair on my head .When she saw me I started xeljanz about 3 months later and it all came back . She lowered my dose without tapering off and I got…"
Thursday
Ahmed replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hey Newjack. What type of Alopecia did you have when you first started seeing Dr. Bordone?"
Thursday
Brock replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hey man... I think it is looking good!  Just always remember where you were and where you are today.  I know the constant feeling of never knowing what is going to happen.  That being said it sounds like the 20mg is working and when…"
Thursday

Profile Information

Relationship Status:
Single
About Me:
Lost all my hair when I was 18, eyebrows , beard, everything other than some parts on my chest.

I am on the study with the new drug Xeljanz for alopecia.
Do you have alopecia?
Alopecia universalis
Are you age 18 or older?
Yes - I am 18 or older

Comment Wall (13 comments)

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At 2:04pm on August 21, 2018, MindOverMatter said…

Hi AlopeciaDestroyedMyLife,  I have sent you a friend request...I hope you don't mind.. but you seem to be the mind all knowledge on this forum when it come to taking Xeljanz... I like you am from the UK and at the minute there is no one else I can turn to for some advice or help with taking Xeljanz in the UK..!

At 6:45am on April 19, 2017, Davy said…

Hi brother,

I live in Uk, Manchester, and have been under Xeljanz through dr. king

for more than a year now. Do you have a mobile phone, I would like

to talk to you about Xeljanz in UK, apparently it is available for

compassionate use. Have you heard about that?

Plese if possible send me a whatsapp message at the +393286266248.

very appreciated

At 9:22pm on May 20, 2016, Stressedmom said…
My daughter is on Xeljanz oral for 5 months. She is experiencing rapid regrowth since month 4 and while patchy, hair is dark and soft and her own healthy hair regrowth. The doctor is blown away with the progress.
This truly is a miracle if only for the hope that we really needed to have that one day this could be reversed.
At 2:17pm on January 26, 2016, The_Flyest gave AlopeciaDestroyedMyLife a gift
Gift
Thanks for doing this on the forum, keep up, be great
At 3:29pm on December 20, 2015, Hope finder said…

Hi ADML

I hope your progress is being maintained. 

I'm new to this forum but I have been monitoring it since you started it. I have to commend you on your work. You have encouraged thousands based on the over 225,000 views.

You could even say that you are a pioneer. I never suspected you of being a conman because of the press, Pfizer are a multi billion dollar company who do not need crooks selling snake oil and you have been a member for quite a while prior.

What got me hooked was the letter you received from Pfizer confirming Turkey Xeljanz is genuine and affordable.

If you accept me as friend I hope you would be able to further discuss how I could obtain Xeljanz in Turkey.

Whether you accept me as a friend or not you should be truly proud of your work.

At 2:37am on October 1, 2015, Naresh said…
This is Naresh from India. How can I get tofacitinib citrate. Please reply me
At 7:38pm on July 6, 2015, LittleSadEyes said…

At 7:19pm on July 6, 2015, LittleSadEyes said…

At 8:42pm on January 20, 2015, lusha22 said…
Hi:) I sent a friend request... Would you mind if I asked you a few questions? I'm 37 yo female with AU.
Thank you!
At 4:25pm on December 22, 2014, itzmejudy said…

Thanks for friend request.. Hope you are doin well.

 
 
 

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