AlopeciaDestroyedMyLife
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AlopeciaDestroyedMyLife's Discussions

Xeljanz (Tofacitinib Citrate): My experience on the trial

Started this discussion. Last reply by Joserid on Tuesday. 9265 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

 

AlopeciaDestroyedMyLife's Page

Latest Activity

Joserid replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hello Lu391, I am not still with tofacinix. I hope to start at the end of the year. I don't know how to get it but here there are people that can help you. It seems that you can buy it in Beacon Pharma at Bangladesh:…"
Tuesday
lu391 replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"please, if you order TOFACINIX, you can tell me if you can get it to Spain, if customs make you trouble, Thanks"
Tuesday
Patchylatchy replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Is it possible by taking Xeljanz for quite some time that after stopping it or decreasing the dosage the alopecia would be worse possibly venegence mode? thank you"
Monday
Joserid replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi, I am with AA from 2015 and AU from 2016. I was not very motivated to take tofa. My dr in Spain, he has a great reputation, he told me that it was not secure. Anyway, I met a friend whonrecommend to me this forum and I was thinking to start with…"
Apr 5
sydap replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Joserid, much better thank you.  I'm on the Pfizer Ritlecitinib trial and pretty much at full re-growth.  Hair still about 50/50 white/natural color and improving every day.  How about you, how are you doing?"
Apr 5
ariel015 replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Ok thanks for letting me know!"
Mar 31
Fingers_Crossed replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I did not notice any shedding with stopping for the vaccine but I did have COVID in January and I had to stop tofa for a week and I developed 2-3 spots. They are growing back now.My docs reasoning for stoping a couple days prior to the vaccine is…"
Mar 31
ariel015 replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Nat and Fingers_Crossed, thank you for your replies! @Fingers_Crossed did you experience any noticeable shedding or new patches after going off for that long? I haven't ever stopped taking xeljanz even for a day since I started it and am…"
Mar 31
Fingers_Crossed replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
" Hi Ariel, im taking 20 mg a day. My doctor wanted me to stop for 1-2 days before the vaccine and then 1 week after the shot but that was just too long for me so I stopped 24 hours before and then restarted 5 days after the shot. I have only…"
Mar 31
Joserid replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"And how are you now sydap? Emotionally better? Are you taking any treatment?"
Mar 31
sydap replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Joserid, this really resonates with me.  I had a very similar experience before I developed alopecia - very stressed, anxious, and life not on the right track.  I knew something was wrong with my body, and like you was grateful that the…"
Mar 31
Nat replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi, I got both doses and did not change the dosage. "
Mar 30
ariel015 replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Guys! Can people who have got the COVID vaccine remind me how they changed their xeljanz dosage? Im currently on 15 mg xeljanz one day then 20 mg the next day (alternating). I also take 15 mg methotrexate 1 day/week. My doc had said most ppl he…"
Mar 30
Joserid replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hello, I think our body is smart. For e.g. if I was not started with AU, probably I would continue being a very stressed and anxious person. I was not in the right track (only working  not enjoying the life, struggling with family, colleagues,…"
Mar 30
Patchylatchy replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi all. Would you say we have a very strong immune system that should be calmed down or a very stupid immune system?"
Mar 29
Patchylatchy replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I totally agree. It is quite concerning given that we have an overactive immunesystem."
Mar 24

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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