AlopeciaDestroyedMyLife
  • Male
  • UK
  • United Kingdom
Share

AlopeciaDestroyedMyLife's Friends

  • MindOverMatter
  • Shad
  • Livia18
  • Sara
  • AreataSince2010
  • Shaku
  • Sad1995
  • kay
  • Youknow
  • Omar Hamzeh
  • magmck
  • Annie London
  • Mohammed
  • maireadcg
  • Jake

AlopeciaDestroyedMyLife's Discussions

Xeljanz (Tofacitinib Citrate): My experience on the trial

Started this discussion. Last reply by Rascalx2 yesterday. 9106 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. 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

Rascalx2 replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"If you are getting spots then get the shots, this is pretty unpredictable disease and at times can become instable. Getting the shots has helped me, but it certainly is not overnight success. I noticed that if a shot in the bald spot takes about a…"
yesterday
ariel015 replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"overall I would say after about 2-3 months on the drug the shedding has definitely decreased though!"
Monday
ariel015 replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thanks for that! The reason why my new derm wanted to do the shots is because she still thinks I am actively shedding. I have lost the majority of my hair so I think I have become desensitized to the shedding and could still be having it happen now.…"
Monday
Gunnersup replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I'm still in the early days of Xeljanz, but I have seen plenty of people on this forum get injections while on xeljanz- it usually helps alot. Btw, what month did you stop shedding/start regrowing?"
Monday
ariel015 replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi guys, I have a question for all of you on xeljanz. I have been on xeljanz continuously since April 2020, and increased my dose from 10 mg/day to 20mg/day early August 2020. Although my hair has been somewhat growing back, I still have a few…"
Sunday
Kathy replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I’ve had the same experience with flu shots and any immunizations. Been charting myself for over 15 years. I don’t get the flu shot or any other except when new grandchildren are born and the drs day it’s necessary.  Always…"
Oct 8
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Yeah I feel you and with AA not AU I think just sticking on the meds without steroids is the best option. Totally get the emotional wreck aspect, believe me - I was the same, Sometimes I had to take Valium just to get through the day during my…"
Oct 8
Tori replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thanks, Frida! You are probably right. I am trying to be patient and positive but feeling really bad these days. Emotional wreck... Can't focus on my work, family, crying all the time.  I read this whole thread but systemic steroids/pulse…"
Oct 8
Patchylatchy replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"hi everyone, I apologize for asking too many questions. Has anyone seen some regrowth comin up on their lower lash line but then the hairs break easily.. I tried latisse and it isn't working, its driving me crazy. every time Im hopeful I see…"
Oct 8
Rascalx2 replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I have thinned out hair but no bald spots as of now, i had bald spots intermittently but hs been good for past few months, I believe its from good dose of vitamin D from the sun. I decided to not get flu shot this year as I feel it really ramps up…"
Oct 8
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Tori, I would keep going, it often can take more then 6 months and if your alopecia is in a particularly strong phase it probably will take longer. I would stay on current dose, consider an oral steroid pulse (search on this thread- about 3…"
Oct 7
Tori replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I also have AA, been on tofa for 4.5 months. Started with 15 mg, after 1.5 months switched to 20 mg, almost 2 weeks ago switched to 25 mg. In addition to that, I've been getting steroid shots into my spot, had 7 rounds so far. My largest spot…"
Oct 7
Patchylatchy replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thank you so mucn"
Oct 6
Patchylatchy replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thanks"
Oct 5
eleven11 replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hey Noaki,  I was searching the board for another topic and saw your comment and wanted to let you know what Dr. Brett King at Yale said to me.  I was also really worried about coronavirus and Xeljanz, and he essentially told me that I…"
Oct 5
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Patchy Latchy, Basically he just said to stay away from grapefruit, and watch the alcohol, as in a few drinks a week ok but daily alcohol may put strain on the kidneys and liver. Other then that cholesterol can go up, so managing that with diet…"
Oct 3

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)

You need to be a member of Alopecia World to add comments!

Join Alopecia World

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!
 
 
 

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

© 2020   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service