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 Thursday. 6717 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

Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thanks Kevin, it’s price is reasonable- compared at least to some of the other Jak inhibitors. I found this article about combining tofacitinib with olcacitinib in dogs. Interesting. The warnings re side effects are similar to xeljanz - a bit…"
Thursday
kevin replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
Thursday
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Ok so this a weird question - but I noticed there is a Jak 1 inhibitor for dogs. Has anyone heard of it being used on humans and would it be safe to work on humans? It’s used to treat dogs with dermatitis and inflammation of the skin.…"
Wednesday
Football fan replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Good luck with your appointment.Hopefully you have some good news to share."
Wednesday
Anna replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I am actually going to see Dr. King on the 26th - and believe me I have a list of questions as long as my arm! Frida helped articulate some of them for me too. Promise to let you know if he tells me anything at all interesting."
Jun 18
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Oh no that’s not nice. Are you using anything topical that could be reacting?  I remember when my hair was falling out I had a burning feeling but once the hair was gone the burn left and hasn’t come back though I sometimes get a…"
Jun 18
Carlie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Football fan, I use the tape with my wigs. I actually cut one piece into two and tape the front and back. It hold the wig in place and you don't have to worry about all that stuff. I took me a year to discover it."
Jun 18
Football fan replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I totally understand how you feel Anna.Wearing a wig in Southern California sucks,you can’t go in the pool,on a boat your afraid it’s going to blow off not to mention all those 100plus degree days and sweat is dripping down your…"
Jun 17
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Oh Anna, I hate that you have to go through this. The half life comment breaks my heart cause I know it to be true in my case too. I felt like I was just existing. I must say I’m still not 100% recovered- hair wise I am but emotionally the…"
Jun 17
Anna replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Well, I am in the minority with you Football fan, and I know how much it SUCKS. I do think one day there will be an alternative that works for the likes of us, but it's likely several years off. In the meantime, I live a half life as someone…"
Jun 17
Football fan replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thanks for the info Frida.Will keep everyone posted if  ever I get to try barcitinib probably won’t be for a while because it is so new and hard to get.If any non responders try it please let us know if it works."
Jun 17
Newjack replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hey guys, I think I asked this before.  But my hair/scalp hurts still even with the great regrowth I'm having. Is this normal? Does anyone else experience this while having regrowth? I just buzzed my head and it was extremely…"
Jun 17
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi football fan, Really sorry to hear you haven’t responded to xeljanz. I really wish there was an affordable and sustainable solution for all of us with this condition. The news re barcitinib being approved is good news. I, being a nosey…"
Jun 17
Football fan replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Anna I started at 2 pills a day went up to 3 pills and even tried 4 pills for 5 months.Also tried it with plaquenil with Allegra and also trying spironolactone now with no results.It has been a 3 year journey opps almost forgot I also tried the…"
Jun 16
Shad replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Carlie, I have someone in Turkey who buys for me and send it to me each time with passengers ( each time I have to find people who comes to Canada to bring for me 1 or 2 box)  if you mention you have 12 box, custom will make you problem I…"
Jun 16
Anna replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Football fan how long and at what dose were you on Xeljanz before it was determined you were a non-responder? I ask because I think I may be one too.... thanks"
Jun 16

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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