lara
  • Female
  • Köln, RLP
  • Germany
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Lara's Friends

  • DragonandFox
  • Arun B
  • TrayG
  • Giusep
  • cws
  • AlopeciaDestroyedMyLife
  • kimberj
  • Susan McAdams
  • Hayley
  • AlyNYC
  • Starshine
  • Debs

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Latest Activity

DragonandFox left a comment for lara
"Hi Lara.  I apologize because i only saw your friend request just now.  This forum is not the best and I never got or saw any messages in my email and I rarely come around here.  When I do I never actually notice activity in my…"
Feb 5, 2018
DragonandFox and lara are now friends
Jul 7, 2016
lara replied to SmileNL's discussion What does really help? Regular medicines of alternative therapy? in the group Frontal Fibrosing Alopecia
"Hi Dragon & Fox, your post was really informative! Since I suffer from both, alopecia areata and ffa, I am very interested into JAK-inhibitors like tofacitinib ('Jakafi') regarding their potential to maybe adress both diseases (Jak…"
Apr 22, 2016
lara joined Celia UK's group
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Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.See More
Apr 22, 2016
lara replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"I called the office again and Pam said that the form was the usual procedure and that after my form has been revised they will contact me to make an appointment...she also said that the earliest available appointments will be in the fall, so I am…"
Jun 8, 2015
lara replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"FYI: "Lilly and Incyte Announce Webcast to Discuss Baricitinib Phase III Data By a News Reporter-Staff News Editor at Pharma Business Week Eli Lilly and Company (NYSE: LLY) and Incyte Corporation will host a webcast on June 11 to discuss…"
Jun 8, 2015
lara replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hummm, thanks a lot for replying, because this is weird indeed. When I phoned the office I was told to send an email to alopeciaareata@ yale (don't remember the address clearly). Anyway, I received an automatic reponse which contained a form…"
Jun 3, 2015
lara replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Thanks a lot for your quick response - I wish you the best for the upcoming appointment!"
Jun 3, 2015
lara replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Regarding treatment under the supervision of Dr King I have a few questions - I 'd be really grateful if someone could answer -given that you now have to fill out a form before the office contacts you to make an appointment, I have no idea how…"
Jun 2, 2015
lara replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"@ DJ88 maybe you had this in mind: (starshine's post on an email exchange with dr king in january) I was lucky to get a response from Dr. King regarding an inquiry as to the results of the initial trial for Xeljanz.  I had spoken with him…"
May 6, 2015
lara replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Hi Mandy, I'm sorry for the late response but I was incredibly busy the last weeks. I am very happy to hear from you and can relate to your experience. Before this disease I never could have guessed what eyelashes mean to me ... What seems…"
Apr 20, 2015
lara replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"Most market research articles indicate that baricitinib will be introduced to the market in 2023, if I'm correct (?), and filgotinib has only completed phase 2B Their availability seems a pretty long way off, especially for people who do not…"
Apr 20, 2015
lara replied to AlopeciaDestroyedMyLife's discussion Xeljanz (Tofacitinib Citrate): My experience on the trial
"To all Europeans who come to this discussion and are interested in Xeljanz: Are you interested in starting a discussion on this? I don't know about the attitude dermatologists in your country express towards this treatment but in Germany they…"
Apr 1, 2015
lara replied to Starshine's discussion Dr. King comment on Xeljanz trial to date
"Thank you for your reply starshine! Since I am not an American citizen, I do not have an American insurance anyway, and German insurances never pay off-label medications, so I am aware that the payment would be my own problem. As I am going to study…"
Feb 4, 2015
lara replied to Starshine's discussion Dr. King comment on Xeljanz trial to date
"hey starshine, since I read that you have diffuse aa as well and took steroids in the past ,as a newly diagnosed (quite an odyssey to get the right diagnose if you have the diffuse pattern -.-) i would like to know what your opinion on oral steroids…"
Feb 3, 2015
lara updated their profile
Feb 3, 2015

Profile Information

Do you have alopecia?
Alopecia areata
Are you age 18 or older?
No - I am not 18 or older

Comment Wall (2 comments)

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At 4:32pm on February 5, 2018, DragonandFox said…

Hi Lara.  I apologize because i only saw your friend request just now.  This forum is not the best and I never got or saw any messages in my email and I rarely come around here.  When I do I never actually notice activity in my account, such as a friend request.  :(

SO, did you ever go see Dr. Bordone?  She has never mentioned JAK-inhibititors to me.  Unfortunately, I have stomach issues and can't take ANY anti inflammatory meds which she has said works for many people.  She put me on a lotion I make myself with the powder from the capsules of Tacrolimus, but that has NOT been working for me AT ALL!  She's trying to get me off of the Clobetasol because I am experiencing skin Atrophy, but it is the ONLY thing that works for me.  She told me to hang on they're coming up with "something".   My hairline is increasingly decreasing.  I have super thick nice hair other than that.  But the chance for bangs is slowly becoming an issue and I'm feeling a bit panicked since the hairline is "scaly."

How are you?
Eve

At 2:09am on December 18, 2014, LeslieAnn Butler said…

Hello Lara, and a warm welcome to AW!

How are you today?

 
 
 

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