AlopeciaDestroyedMyLife
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AlopeciaDestroyedMyLife's Discussions

Xeljanz (Tofacitinib Citrate): My experience on the trial

Started this discussion. Last reply by Katrina on Friday. 8017 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

Katrina replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thank you all! About me - with no personal/family history of alopecia I became 100% AU over a 3 month period in 2016 at the age of 25.  Although the cause was unknown, we do believe it was triggered by a severe allergic reaction I had to a…"
Friday
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thanks magmck,  i have gotten a lot of support on this forum from people so I like to give some of the love back. Without this forum I wouldn’t have my hair back! I just hope that people can come on here and find a way to get back their…"
Friday
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Katrina, i was actually looking at this the other day for some reason - I think I stumbled on it through my various reading- studies on Tofacitinib during pregnancy have been conducted on users who accidentally fall pregnant while on treatment.…"
Friday
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thanks guys! I’ll defintely keep everyone posted on how I go. Surgery isn’t until end of June and I’m weaning off most of my supplements except for vitamin d. I’m going to probably cut down my xeljanz to 10 mgs a couple weeks…"
Friday
magmck replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Frida  I’ve been so impressed by your journey and the support and inspiration you have given  to others on this site.  The medics involved in your recent health concern should be able to balance and assess the impact of…"
Thursday
kevin replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I hope he will not fall for so much spent-money health efforts and thoughtful morale is trying to reduce the medication and see how it goes. I wish you all the best that it will be well"
Thursday
Rascalx2 replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"i would talk to MD and definately stop taking it if you are going to get pregnant, and be off it before attempting , you will probably lose your hair but the joy in your life that comes w a child does not compare, look at it as your giving…"
Thursday
Rascalx2 replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Been on it for 2 years, already have kids, had kids before hair loss, ive said this before on here , its still never has gotten thick as it used to be, can pretty much see scalp, spots in the back.. im just taking it to keep what i have and have…"
Thursday
kevin replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"hi rascal how long have you been taking xeljanz? if you are a man you can make children it's forbidden for women"
Thursday
Rascalx2 replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"When i go down to 15 mgs from 20 i get lots of spots, im male but i woulnt take it to get pregnent"
Thursday
kevin replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Katrina I have been taking Xelanz for 1 year I asked my dermatologist he told me that we need to give him time for the body to get used to and the immune system that is more used to tackle to the hair, he told me that it must be treated for a…"
Thursday
TC replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Frida,  You'll want to give your body the best chance to prevent any complications or issues. Consider pausing Tofacitinib 7 days before surgery. It's very important to also pause Resveratrol because of its blood thinning…"
Thursday
carol replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Katrina! It's good to hear that you got full regrowth and you've been taking it for 2.5 years. How big is your hair? Were you AU? I know someone who took ir for 4 years and went off without shed. She is in remission."
Thursday
Sad_Rapunzel replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"such amazing words to say - "full regrowth"... you exist! girl who has full regrowth!"
Thursday
Newjack replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I think it explicitly says to completely stop taking the medication if you are pregnant. I would ween off it and not stop cold turkey... It would then be safe for you to go back on the med... That is my understanding, I would consult with a doctor…"
Thursday
Katrina replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Looking for some advice- I have been on Xeljanz for over 2.5 years (mostly 20mg/day) and have full regrowth, and though I am tolerating it well, I am considering slowly weaning down or completely off to maybe become pregnant next year.  I…"
Thursday

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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