AlopeciaDestroyedMyLife
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AlopeciaDestroyedMyLife's Discussions

Xeljanz (Tofacitinib Citrate): My experience on the trial

Started this discussion. Last reply by Rascalx2 8 hours ago. 8346 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

Rascalx2 replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I decreased dose for xeljanz from 20 mgs to 15 mgs because of the concern few months ago due to risk of pulmonary embolism, i went down slow and have not had any adverse effects, no shedding, no changes, actually feel better , i would love to…"
8 hours ago
zarrin replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thank you for advise, Firstly I will decrease the doseduring one week and stop for one month to see improvmet of fungal infection as I cannot stop immeditely.Six months ago when I stoped Xeljanz (because of bronchitis) I had general itching (I…"
11 hours ago
jenny replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Same thing happened to me. My Derm is getting nervous because of the blood clot studies. I am not taking birth control, not overweight and wanted to continue xeljanz after he told me about the new studies being released by FDA. I have now started…"
14 hours ago
kevin replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"hi frida me I have to do a irm because I have an effusion at the knees and strangely I have not done anything that can have this effusion that lasts for 3 months and it's painful, I hope I have not developed any of osteoarthritis because I read…"
15 hours ago
kevin replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I also had an early infection that I was taking xeljanz acnes and shingles that went missing in 2 weeks without any medicine. if the immune system is weakened with blood tests will be detected. even if you stop a certain that your infection…"
15 hours ago
Frrankie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thank you I will do as you suggested. I appreciate your insight. "
18 hours ago
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Frrankie, doctors are getting a bit anxious because of the recent studies on RA patients. While the concern is merited I do think they are not really looking at the studies in light of the population studied, but unfortunately it’s hard to…"
19 hours ago
Frida Rupert replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Zarin, you do have some time with the meds. Recently I came off the Tofacitinib for a surgery - I was off for a week, and so far (8 weeks out) I haven’t had a shed or adverse outcome from being off for that week. I think it can be difficult…"
19 hours ago
zarrin replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"It is very hard to take decision for stoping xeljanz and lose ally hair which was my wish for more than 23 years..I try to treat nail infection with remedy if not help I have no choice and will stop ( living in schaduw ):("
23 hours ago
Rascalx2 replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Sorry for your hiccup with xeljanz, i was told to take shingles vaccination but i would have to stop xeljanz, so i have not opted to take that step yet, it is so hard when faced w getting the suggestion of stopping xeljanz, i worry alot of liver…"
yesterday
Football fan replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I had a bad infection in two toes after a manicure (was not on xeljanz at the time)couldn’t even touch them tried peroxide ,benedine etc.Did not  have time to go to the doctors because I was leaving on vacation.First day on vacation…"
yesterday
zarrin replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"The physician thinks my immune system is weak because of Xeljanz and my body not able to fights with fungal infection and also there is a chance for invasive fungal infection that will be fatal .most oral antifungal antibiotics cause liver toxicity…"
yesterday
Frrankie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Try the bleach water a few times a day. Try an once per gallon and soak for maybe 10 minute's. Just an idea, but I bet it helps. If you find a nagative reaction. ..stop."
yesterday
kevin replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"hello I do not know if it is related to xeljanz but your doctor should give you a treatment for your nail infection and it does not leave with the treatments stopped a while xeljanz the time that your infection disappears"
yesterday
zarrin replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi , thank you so much for swift reply. I am really upset and almost crying . i did not try bleach water and probiotica. I wil try it."
yesterday
Frrankie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Question, I have been reduced to 5mg pills twice day. My doctor said this is the new FDA max for xeljanz. Someone with arthritis had complications so I got reduced. I am going to see her this month, any prescription I may ask for to help support…"
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 (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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