AlopeciaDestroyedMyLife
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AlopeciaDestroyedMyLife's Discussions

Xeljanz (Tofacitinib Citrate): My experience on the trial

Started this discussion. Last reply by Sara yesterday. 5152 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

Sara replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"After removing the xeljjans hair does not cause problems?"
yesterday
Sara replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Do you have any information on working on stem cells for alopecia?"
yesterday
Christopher's_mom replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"My son began shedding hair August 2016. Within a couple of weeks his hair began falling out in clumps. Within a month or so from the initial loss of hair he had 50% loss of hair on his head and shaved it. Around December he noticeably lost some…"
yesterday
Patchesforlife replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"How old is ur son? Also dod he have his hair back?"
yesterday
Christopher's_mom replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"My 17 year old son takes 5 mg. twice a day. I think that's what most people start at so you don't seem to be starting at too high a dose."
yesterday
rmoore replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"No, my insurance won't cover it for me."
Tuesday
Patchesforlife replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thank yiu. How are yiu obtaining xeljanz? Copay ot insurance?"
Tuesday
rmoore replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"My rheumatologist just started me on Xeljanz XR 11 mg once a day for AT (I don't have RA).  I have only been on it 3 days.  After reading these posts I'm worried my dosage is high to start off.  I also take plaquenil, and…"
Tuesday
Christopher's_mom replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Ben, I don't blame you for wanting to increase the dose. Xeljanz is so new an established protocol hasn't even been issued for maintenance. I'm not sure a protocol even exists for alopecians using it off-label to grow hair. Are…"
Tuesday
Patchesforlife replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Singh, Did you receive any repky from NAAF?"
Monday
Frrankie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I understand. Funny my nails might be the only reason I stay on xeljanz."
Monday
bibby replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Ben. What study was the derm referring to when he said the results were not good? From m research the results on most studies have showed the results were 70% positive"
Monday
Rascalx2 replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"My nails are fine .. i mean good, i only had brittle , and cracks when alopecia first hit. That has cleared up. I wouldnt take xeljanz just for nails .. I just want freakin hair!"
Monday
Frrankie replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"How are your nails. Has xeljans help with your nails. I have had Alopecia for a long time but just recently started to have nail issues. My nails are brital and crack/split done the middle. Xeljans has helped but they still crack. I hope maybe after…"
Monday
Rascalx2 replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hey Ben Ive been on xeljanz a year this july, I increased dose from 10, to 15 to 20 mgs. Im AU a year and a half, and been on 20 mgs for past few months and the reuslts are not good. Very little hair on sides of head, very faint fuzz on brows, and…"
Monday
singh replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Ben, A lot of people on here have seen results on a higher dosage. All the the factors you have to keep in mind are how long have you had alopevia got the for a higher dose might give you that initial boost you need. Or it could be the wrong…"
Monday

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 (12 comments)

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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.

At 12:01pm on November 23, 2014, Morgan said…
Thanks for the updates and for trying this out so we all can get more answers
Morgan
 
 
 

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