AlopeciaDestroyedMyLife
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AlopeciaDestroyedMyLife's Discussions

Xeljanz (Tofacitinib Citrate): My experience on the trial

Started this discussion. Last reply by Jcortez05 19 hours ago. 9442 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

Jcortez05 replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"My husbands cousin was getting very sick with her implants and had hair thinning - she took them out and she said almost instantly started getting better. Felt like a new person "
19 hours ago
katiegirl replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"It could be possible, they say Covid hair loss can happen anywhere from 3-6 months. Not sure about the breast implants but I have heard this also. "
20 hours ago
Starshine replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Not sure about the breast implants, but I lost a lot of hair three months after having Covid.  It lasted for about a month and then stopped.  Derm said that was very common after Covid."
21 hours ago
sadele replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Kevin, Are you able to get Ruxolitinib from Beacon?"
21 hours ago
sadele replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I have a question, does anyone have breast implants? I'm asking because I have them and have read a lot of Breast Implant Illness and it being linked to hair loss... just curious if it's just me that has them and got alopecia or if…"
21 hours ago
Frrankie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Just felt like sharing a comment my dermatologist made. She said the new jac inhibitors look to work better than xaljanz for alopecia. With that said let's see. This disorder is individually  different from person to person.  I have…"
yesterday
Starshine replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thanks, Kevin.  That is good news.  Please let us know if it works as well as Xeljanz for you.  I think if it is approved specifically for alopecia, it will be easier to get insurance companies to cover it.  That is their usual…"
yesterday
Starshine replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thanks for the encouraging news, Football Fan.  I hope it does get approved this year.  I wonder if it will work as well as Xeljanz for the people who have success with Xeljanz.  I feel your pain in not getting all your hair…"
yesterday
kevin replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"hello I have been taking xeljanz since 2018 alopecia since a child I am 34 years old I recovered my beard eyebrows hairs but the hair 20%. I usually take 11mg of beacon. on June 3 my dermatologist will prescribe me baracitinib 4mg due to atomic…"
yesterday
Football fan replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi everyone so happy to hear from the three of you.I have tried xeljanz with every combination you can think of(Allegra,Spirolactone,even Hydroxychloroquine)still at about 40 percent of my hair so I can’t go without a wig.I do have all my…"
yesterday
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…"
yesterday
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…"
yesterday
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…"
yesterday
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…"
yesterday
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…"
yesterday
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 :(…"
yesterday

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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