pauliegirl
  • Female
  • Batavia, IL
  • United States
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Latest Activity

pauliegirl replied to CurlyK's discussion Bonded Hair Pieces in the group Frontal Fibrosing Alopecia
"Thank you SO much for this thorough and thoughtful post! What a great thing to give so many of us peace of mind for if and when we feel the need/desire to go this route and alleviate the emotional distress that can accompany this thing that has…"
Feb 23
pauliegirl left a comment for Fi
"Hello again:) The side effects of low dose accutane (20mg) are generally nil to minimal dryness. I would say that’s all I have had if any dryness! Honestly, the way ffa affected and still does affect me, a small price to pay in comparison to…"
Feb 17
Fi left a comment for pauliegirl
"Hi Pauliegirl. thank you for your reply. I had mentioned accutane to my consultant and she thought it would be difficult to stay on this as the side effects can be nasty. I will have another look though. Thanks for the suggestion and I am glad it is…"
Feb 17
pauliegirl left a comment for Fi
"Fi, I am concerned about the suggestion of methotrexate. That is a very serious drug! I don’t often reply on this wall but I feel compelled today! I have tried so many things over the past four years so I cannot say 100% for sure what has…"
Feb 14
pauliegirl and Jack_86 are now friends
Jan 19
pauliegirl liked Geri's discussion FFA and common beauty aid ingredients
Aug 6, 2019
pauliegirl commented on Celia UK's group Frontal Fibrosing Alopecia
"Hello Sarah, If you’re willing to consider taking accutane 20mg, in my 3.5 yrs of research and personal experience with this crap disease (though any disease sucks!!;), it’s the best shot we have at stopping the loss. I remain on it for…"
Aug 4, 2019
pauliegirl commented on Celia UK's group Frontal Fibrosing Alopecia
"Hello,  For those of you who are concerned about high cholesterol, adopting a plant-based diet can remedy it! It’s the saturated fat in the animal products that we consume that, for most people, is the guilty party!  Great person to…"
Jul 9, 2019

Profile Information

Relationship Status:
Married
About Me:
I am a 50 y o female dx'd with FFA 1/2016. Devestated, like everyone with this disease which I look back and realize was in progress for at least 1.5 years starting with brows and progressing to both temples rather swiftly shortly before dx. History of autoimmune disease of Raynaud's with fingers and toes since later teens, and bad migraines since age 16. Interestingly had mono (Epstein-Barr virus) age 16. Wondering if that started all my autoimmune issues as well as migraines. Intense stress of son having a sudden cardiac arrest in 2012 (survived it well!!) and intense work stress as a nurse since about 2013 contributed? No known family hx of alopecia though there are autoimmune issues both sides of the family. I have an incredibly supportive husband as well as sister who has been my hero in navigating things from physical to mental since dx. I see a derm in Chicago who specializes in hair loss and I think she is great. She also offers an alopecia support group quarterly. Treatment-wise... Plaquenil 200 BID since bx confirmed in 1/2016. Biotin; Iron also as I have anemic hx. Vivisacal for about a year. Topical steroids Fluocinanide since dx adding clobest.... sp... for past 6 months. Off them since 5/17 when I noticed flare includes progression at top of forehead and skin too thin to continue steroids :( Added Tacrolimus topical, Finasteride 1mg and Doxy. Have been on Vit D 4000IU for years. Oh, I got microblading of my brows done 1 yr ago. Huge boost to my self-esteem...highly recommend. The mental lows are terrible and I am ready to seriously investigate hair pieces people are talking about with hopes someday of the disease stopping so i can get a transplant. I, like most or all hair loss patients, desperately want research to happen and yield a treatment! Whew that's a big gush of info ! Appreciating this site for commraderie in this crappy hand we have for some reason been dealt!
Do you have alopecia?
Scarring alopecia
Are you age 18 or older?
Yes - I am 18 or older

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At 9:44am on February 17, 2020, Fi said…

Hi Pauliegirl. thank you for your reply. I had mentioned accutane to my consultant and she thought it would be difficult to stay on this as the side effects can be nasty. I will have another look though. Thanks for the suggestion and I am glad it is working for you!

 
 
 

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