pauliegirl
  • Female
  • Batavia, IL
  • United States
Share

Pauliegirl's Friends

  • Halfbakedwho
  • Jess

Gifts Received

Gift

pauliegirl has not received any gifts yet

Give a Gift

 

pauliegirl's Page

Latest Activity

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…"
Thursday
pauliegirl liked Robin's discussion Regarding my successful trial with cannabis oil tincures!
Oct 5
pauliegirl updated their profile
Jul 7
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
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
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
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
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
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
pauliegirl commented on Celia UK's group Frontal Fibrosing Alopecia
"Jules Australia, I was put on the plaquenil when diagnosed with FFA 1/16. At that time I did not know that I had scleroderma, CREST syndrome,5 though (the “light” version of scleroderma) and actually x30 yrs. [A chicago rheumy did labs…"
Mar 24
pauliegirl commented on Celia UK's group Frontal Fibrosing Alopecia
" It’s late here in Chicago and I had decided to start dictating these posts versus typing on my phone. So I hope that the typos/AutoCorrects that I didn’t proof for have, if nothing else, given you a laugh :-) I do actually…"
Mar 18
pauliegirl commented on Celia UK's group Frontal Fibrosing Alopecia
"As far as medications are concerned, I believe that the best thing going right now is treatment with Accutane. Jess shared a research study out of Poland back in October and after taking Accutane for one year and then stopping for one year.…"
Mar 18
pauliegirl commented on Celia UK's group Frontal Fibrosing Alopecia
"I believe  that there is a genetic predisposition to this disease. I believe that there is at least one environmental trigger to this disease, namely chemical sunscreen. Chemical sunscreens are  known endocrine disruptors and I believe…"
Mar 18
pauliegirl commented on Celia UK's group Frontal Fibrosing Alopecia
"I have been writing a terribly long post and see more of you all chiming in. Such a truly good group of women!! I have to send my reply in parts as it’s so long. So much to say! I do apologize for the lengthiness but wanted to share and…"
Mar 18
Christi Q. 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 really thought the Dutasteride was helping.  I went all year without losing much more that I originally had.  I also believe in Rogaine.  I had to go to the emergency room about a month or so ago during a very stressful time and I…"
Feb 13
Plf 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
"Hi all, I too have been a vigilant user of sunscreen both in make up and general sunscreen for the body, have now gone out and bought one from the health food shop that is a zinc based one. In the last week I have noticed my skin is developing…"
Feb 12

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

Comment Wall

You need to be a member of Alopecia World to add comments!

Join Alopecia World

  • No comments yet!
 
 
 

Badge

Loading…

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

AlopeciaWorld.com: It's hair loss support at its best!

© 2018   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service