AlopeciaDestroyedMyLife
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AlopeciaDestroyedMyLife's Discussions

Xeljanz (Tofacitinib Citrate): My experience on the trial

Started this discussion. Last reply by Merry yesterday. 8966 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

Merry replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thank you!"
yesterday
valevan85 replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"How do you live with universal alopecia? I have been afflicted for 13 years, I paid for adolescence and the Aime girls discard me because I have tattooed eyebrows and a painted pigmentation head ... you at what age did you have it and how did you…"
Thursday
Carlie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thanks Tori, I didn't see this until now but when I said I wanted to order they sent me an invoice that made no sense. I continued inquiring and did receive this from an Aspar rep: You have received a reply from Hardik Akbari, Aspar…"
Thursday
Tori replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I agree, Venkat Pharma is a scam  https://www.scamwarners.com/forum/viewtopic.php?t=171941&p=381378 I got a response from Aspar but they are still not shipping:  All flights and airports are continue in one week so we will update you…"
Thursday
Carlie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Here's another source that came recommended from someone on here. I will order from these guys because they have the generic. This is the email I received from them. Dear Carlene Ferrero, You have received a reply from Hardik…"
Thursday
Carlie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"When I told Venkat I wanted to order the invoice they sent me didn't make sense, so I kept checking other sources. I heard that Aspar was another good source and here is the response I received from them. I will order from him, I like having…"
Thursday
Tori replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Venkat Pharma looks like a scam...  The invoice they sent me doesn't look legit. No company information, no corporate email account. I searched online and found…"
Thursday
Anna replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi ariel015, I wouldn't think taking methotrexate at the same time would prevent you from upping your dose, but obviously your doc will make that call. I did not have any side effects with Xeljanz at all, though I DO have them with ruxolitinib…"
Tuesday
Arsenalauba replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi everyone! So I’ve been on 4 tablets a day since November and everything has been so so good. But for like 5 days ago me and my family found a spot in my neck and of course got really nervous. Do any of u guys know why there’s a spot?…"
Tuesday
ariel015 replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Anna, I really appreciate your response! I agree it is early in the process, and I think the next time I speak to my doctor (in 2 weeks) I will consider discussing increasing the dose at some point. I should have mentioned that I have ankylosing…"
Tuesday
Anna replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi ariel015, A few things to think about: 1. Many people take months and months before responding - Dr. King believes that a good 20% pf patients don't respond in any meaningful way until at least 6 months in - you are still well within that…"
May 24
ariel015 replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Guys! Just wondering how long it has taken everyone with alopecia areata to respond to xeljanz? Im on 10mg/day and its the second time I am trying it (I had to stop the first time after 1.5 months due to complications). It has been now 1.5 months…"
May 22
ling tong replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thanks a lot! Will check with her dermatologist. "
May 21
Meedo replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi joja101. Sorry to hear you haven’t had much luck with xelijanz . I believe you are seen by dr bordone ? What’s her view on you stopping the medication? Are you still taking 11mg extended release twice a day ?when you say you had no…"
May 21
Nat replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Prednisone pulse helps to speed up regrowth. I don't know if it's acceptable for kids."
May 21
Joja101 replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"After 8 months and not much result on 20 mg Tofacitnib a day i'm getting off it. JMy most recent blood work showed my white blood cell count went down a lot. Below the average :("
May 21

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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