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

pauliegirl liked Geri's discussion FFA and common beauty aid ingredients
Aug 6
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
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
pauliegirl commented on Celia UK's group Frontal Fibrosing Alopecia
"Thank you Liz for the article link! Agreed that it’s pretty technical info but basically looks like all other auto-immune diseases, we are genetically predisposed (gun loaded) and something caused the disease to happen (trigger pulled). I…"
Mar 9
pauliegirl replied to Jennifer's discussion Question on scalp itching in the group Frontal Fibrosing Alopecia
"Jennifer, Appreciate your thorough and thoughtful post. You’re not a downer...your worried about the blow you’ve been dealt and we all get that. Sorry to welcome you to the club but at least there’s comfort and understanding AND…"
Jan 13
Overthis2018 replied to pauliegirl's discussion Please reply if you have used sunblock prior to FFA diagnosis. Having an aha moment! in the group Frontal Fibrosing Alopecia
"It *could* be Ladydi. This lady only stopped using it on her forehead. If you spend a lot of time in the sun I suggest a hat to protect your skin.  It's worth a shot.  Be aware that most makeup foundations also contain…"
Dec 15, 2018
ladydi replied to pauliegirl's discussion Please reply if you have used sunblock prior to FFA diagnosis. Having an aha moment! in the group Frontal Fibrosing Alopecia
"I use sun screen everyday on my face and have for years. could this be contributing to my FFA? This is very interesting ...."
Dec 12, 2018
Overthis2018 replied to pauliegirl's discussion Please reply if you have used sunblock prior to FFA diagnosis. Having an aha moment! in the group Frontal Fibrosing Alopecia
"I just recently found this case study.  A woman with FFa had total regrowth after stopping sunscreen on her forehead.  I have noticed over the past decade or so that it is becoming harder and harder to find facial moisturizer without…"
Dec 6, 2018
pauliegirl liked Robin's discussion Regarding my successful trial with cannabis oil tincures!
Oct 5, 2018
pauliegirl updated their profile
Jul 7, 2018
pauliegirl replied to JAM's discussion New to FFA in the group Frontal Fibrosing Alopecia
"Hi JAM,  I'm sorry you have this damn disease, but glad you've found this site. Having been diagnosed 2.5 years ago, I'd say the very best info I have gotten is from here and research on my own, NOT from the western med docs,…"
Jul 7, 2018
pauliegirl commented on Celia UK's group Frontal Fibrosing Alopecia
"Jess- I have no side effects from the accutane. 20mg daily (because the study used this dose), taken with food sorta high in fat (accutane is simply a big hit of Vit A, and since A is a fat-soluble vitamin, absorbs better with fat on board). Some…"
Apr 26, 2018
pauliegirl commented on Celia UK's group Frontal Fibrosing Alopecia
"Interesting chatter about the sweating! I have always sweated a lot while working out ( I used to run 1-4 miles everyday; for the last year to two have ratcheted that down to 0.5-2 miles fast walk and floor/leg work) and now, with the freaking hot…"
Apr 24, 2018
pauliegirl commented on Celia UK's group Frontal Fibrosing Alopecia
"@Jules Australia and others talking about diet: I just wanted to share about my first visit with a functional med doctor this week. It was really interesting! He is all about the leaky gut and getting it back to a healthy, functional state. While he…"
Apr 1, 2018
pauliegirl commented on Celia UK's group Frontal Fibrosing Alopecia
"@Jess...fascinating article! Thank you! Ugh I thought titanium dioxide was safe but I think there are two types. I will get in touch with my herbalist to get her thoughts. I do believe zinc oxide is safe. @Lynn555 when are you leaving? If you go to…"
Mar 31, 2018
pauliegirl commented on Celia UK's group Frontal Fibrosing Alopecia
"Jules Australia, you betcha and thank you for yours! I’m glad because I think it sounds like your Graham has a mild case also. Yes, pretty much just treating symptoms for these autoimmune diseases. After I figured out I really did have Crest,…"
Mar 24, 2018

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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