AlopeciaDestroyedMyLife
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AlopeciaDestroyedMyLife's Discussions

Xeljanz (Tofacitinib Citrate): My experience on the trial

Started this discussion. Last reply by Starshine 1 hour ago. 9432 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 Apple Jan 29, 2020. 42 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

Starshine replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Yes, I can skip days also, but I think my relapse after Covid was due in part to the fact that I could not keep anything down for about a month, including Xeljanz.  I also worry about becoming immune to it after taking it for so many…"
1 hour ago
Starshine replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Sadele,  I do remember you also.  We are the old-timers on this forum.  Nice to hear from you as well.  I truly wish that something would get approved specifically for this condition.  Xeljanz was a blessing, but I…"
1 hour ago
sadele replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Katiegirl, Thank you for your reply! I do think that I'm more of an "incomplete responder" to Xeljanz and perhaps I've developed an immunity of some sorts to it.... I don't know... I've heard about Barcitinib and…"
2 hours ago
katiegirl replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hey sadele, my derm told me about barcitinib which is another Jak inhibitor specifically being FDA approved for alopecia. I believe it’s a Jak 1/2 inhibitor where as xeljanz is a Jak 1/3. She said it is having really good outcomes on trials…"
2 hours ago
katiegirl replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"so I have never been able to stop altogether. I do stop it when I am pregnant (this is my third pregnancy) and I usually go into a remission during that time at least that’s what my derm thinks. As soon as I deliver though I need to resume…"
2 hours ago
sadele replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Starshine and Football Fan, I use to be very active on here as well... but stopped because my hair eventually grew back (not my eyelashes or brows tho). I had my hair growing for about 3 years and about 9 months ago most o it fell out again :(…"
3 hours ago
MARIA liked AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
Saturday
Starshine replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Katie girl, so good to hear from you!  Thank you for the advice.  I figured it would eventually stop and it is minimal hairless now.  Sadly, I lost a good bit of hair, but hope in time it will recover.  Have you actually…"
Friday
Starshine replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thank you, Football Fan. I will do just that.  I am sorry you did not get all your hair back, but, hopefully if a new drug comes out just for us, it might work better for you.  Fingers crossed. "
Friday
katiegirl replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi starshine, I also haven’t posted in quite some time but I used to be very active on here a few years back. I have been on and off xeljanz over the years due to pregnancies. Currently off of it and got Covid back in December for the second…"
Friday
Football fan replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi starshine I did not get all my hair back but still taking the medication because I don’t want to lose what I have.You will get all the information from Mouree to take to the bank I print it out and they know what to do.I go to Chase they do…"
Friday
Starshine replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Football Fan, I definitely reme.ber you.  How are you?  Did Xeljanz help you get some hair back?  That is so exciting that we may actually get our own drug!  How does the bank transfer work?  I am so new to all of…"
Friday
Football fan replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi starshine also a long-timer on this site.I send an e-mail to mouree@beaconmedicare.com.bd I tell them what strength and quantity(usually 25 boxes of 11mg) I want. I live in California and send my email on Sunday night around 9pm and always get a…"
Friday
Starshine replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi, I am a long-timer on this site, one of the originals, I think beginning in 2014 with ADML, the originator of this post.  it's been a while since I have posted, but I was wondering two things: first, has anyone experienced a relapse…"
Friday
mastros replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"revolut maybe?"
May 7
robertking replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hey Kevin, I am not able to send funds using transfewise any suggestions on a different service?"
Apr 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 (14 comments)

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At 9:51am on September 28, 2019, LJBMD said…

To Alopeciadestroyedmylife: How are you doing now? Are you still on xeljanz? 

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, Toxicmosquitoaf 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!
 
 
 

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