AlopeciaDestroyedMyLife
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AlopeciaDestroyedMyLife's Discussions

Xeljanz (Tofacitinib Citrate): My experience on the trial

Started this discussion. Last reply by Frrankie yesterday. 5434 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

 

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Latest Activity

Frrankie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I read smoking interacts with xeljanz. Do some reading. It may cause an increased chance on getting sick!"
yesterday
Return_life replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"does not make any difference."
yesterday
jackson mcdonald replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"hello everyone. I just recently started X and casually vape and smoke weed here and there. Can this by any chance hinder the medicine i’m taking and make it not work or is it fine if I still smoke."
yesterday
Suzie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"First a little background on me.....I'm 52 and had developed AA during my teen years.  All I remember is my hair was so thin in the back you could see my neck.  Back then all my mother did was took me to our family doctor and he had…"
Oct 10
Sara replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Is there anyone sick with Dr. Burt King?"
Oct 10
Sara replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"What about Dr. Burt King's research? No new drugs found?"
Oct 10
Sara replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"What about Dr. Burt King's research? No new drugs found?"
Oct 10
Sara replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"What about Dr. Burt King's research? No new drugs found?"
Oct 10
dorseygregory replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Not sure if you are still on this site.  My wife has alopecia and it has since progressed to the full universalisis. Complete hair loss all over her body.  I want to help her get her confidence back and keep her from sinking deeper and…"
Oct 8
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thanks Frrankie, It's good to know the journey of others. I have to remind myself hair takes time to grow even in non- Alopecians so it's gonna be twice or theee times that when your body is fighting it (if you are lucky enough to be a…"
Oct 3
Frrankie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hello, also responding the same. First thin white hairs. My thin white hairs are slowly, slowly changing to thick hair with color.My best response is on my eyebrows and face. Scalp has responded but not quality hair, but it is working. My…"
Oct 3
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi guys, Just touching base. Going into my third month of X. So about 8 weeks.... I think (and my immunologist thinks too) that I am responding but it is SLOW... so far white hairs are coming up in my scalp and i think my eyelashes are growing…"
Oct 3
IcarusAlopecia replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Christopher's Mom! Not really. I mean I had like 1 or 2 hairs per day but nothing like when I was like full on shedding back in Sept. 2016. I will def do a year end update in December."
Oct 2
IcarusAlopecia replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"With food but i don't think it makes a difference, really. I also drink alcohol. I know you're not supposed to but I'm a social person and go to bars, parties, etc. I usually have anywhere from 2-4 glasses of wine per week."
Oct 2
Villa fan replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I would suggest that you ask your doctor about maybe going 2 pills one day, 1 pill the next.  From experience, with tapering the dose to that level, I started to suffer loss.  On the plus side it came back when I went back to 2 a day."
Oct 2
Football fan replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"No fatigue here or colds.Xeljanz just doesn't want to work for me.Im hoping The jak 1 and 2 is what I need but Barcitinib is taking forever to get approved."
Oct 1

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 (12 comments)

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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.

At 12:01pm on November 23, 2014, Morgan said…
Thanks for the updates and for trying this out so we all can get more answers
Morgan
 
 
 

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