AlopeciaDestroyedMyLife
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AlopeciaDestroyedMyLife's Discussions

Xeljanz (Tofacitinib Citrate): My experience on the trial

Started this discussion. Last reply by Rascalx2 5 hours ago. 8097 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

Rascalx2 replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"So im thinking to get a shingles vaccination which is recomended beingnon xeljanz, but md said after shot i need to be iff xeljanz for around 2 weeks.. anyone have this experince with time witout xeljanz?"
5 hours ago
jenny replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"yes I do. I sent you a friend request"
Saturday
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Carole, i just use a piping rock one (photo attached) and take the 2 per day. I read somewhere that you should take it seperate as it can cause a bit of indigestion in some but I never had that issue with it. I have to reiterate though- I…"
Saturday
Merrick replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"do you buy the meds in Canda?"
Friday
Joja101 replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Did any experience an instant shed right when they started Xelijanz??"
Friday
carol replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Frida, how are u? could you please show what berberine do you take? And how many you take it for a day? Tks!"
Friday
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Lindsay, buying supplements is a bit of a shot in the dark so I just tend to go for iherb ones or piping rock as expensive supplements are often no better then cheap ones (case in point beacon generic $15 for 30 vs Pfizer - thousands!) I…"
Thursday
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Kevin, make sure you check with your dermatologist first. My theory is very much only a theory. It just seems baricitinib hasn’t had the alopecia studies of jakavi or Tofacitinib but I know trials are happening on it. The problem is these…"
Thursday
Lindzzej replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hey Frida, as usual you are such a wealth of information, thank you.  I have a question on the berberine, where did you order or buy from and did you talk about it with a professional first or just go for it?  I’m thinking I’m…"
Thursday
kevin replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I can tried xeljanz and baricitinib 10 mg and 2mg of baricitinib as you say, but you think it can have a bad action on health? both simultaneously? I see my dermatologist Tuesday I ask him the question I thank you."
Thursday
kevin replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"hi frida you're right i also read for non-responders or incompetent regrowth that he tested the jakavi with the lowest dose on the 8 patient 5 had a complete regrowth, i wonder if baracitinib would react like that it's also an inhibitor…"
Thursday
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
" Hi Kate, welcome to the thread, though I’m sorry alopecia lead you here. Stats around response are kindof hard to find, I took heart at the beginning of my journey in a study which showed a guy who didn’t respond for 8 months (like…"
Wednesday
TC replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Kate,  Welcome to the forum and your new family. If your AU was very rapid and recent, it sounds like your immune system may still be in aggressive mode. It's promising that you're getting some regrowth from injections. How long…"
Wednesday
magmck replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Singh  Im struggling to find a doctor willing to support this too "
Wednesday
Kate replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi guys New to this site but very impressed with the thread - took me a while to read. I'm after some stats :) - how long does one normally expect to wait to see some results? I had developed AU very rapidly last year, took me a while and a…"
Jun 19
singh replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi, Anyone on this site got a UK dermatologist/dr looking after them whilst on xeljanz ?  I Need a UK dr/ dermatologist who will be willing to give me an appointment so I can ask if I can try a co-therapy while am on tofacitinib. Thank you…"
Jun 18

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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