pauliegirl
  • Female
  • Batavia, IL
  • United States
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Flint 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 used a moisturiser with sunblock for years before diagnosis but sunblock used elsewhere hardly ever. I lost leg and arm hair also. My dermatologist is one involved in this research. The result was inconclusive. I do not use sunblock any more…"
Jan 7
Liz L 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 Rachel,Me too, super sensitive skin and very prone to allergies, food intolerances. Since stopping eating dairy the eczema I had all my life has disappeared. I'm also gluten free now and feel much happier, less bloating, skin a lot calmer.Liz"
Jan 7
Rachel Germany 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 Ladies, I have suffered with eczema all my Life, until I moved to Germany I uses Aqueous Cream all oder.  On moving to Germany at the age of 26 I turn started to use Eucerins Intensiv Lotion F.  I have only ever used sun screen in…"
Jan 4
Liz L 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
"Have just come from a visit to my trichologist Dr Carol Michaelidis at Phillip Kingsley London who says for years she has been concerned about spf in face creams and this stupid condition. Liz"
Jan 3
pauliegirl 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 Liz, Do you have access to the EWG app? You can look up products that are recommended as well as scan barcodes (not all products have been reviewed) of ones you own or are looking at while at the store. In case you don’t, attached are 3…"
Dec 29, 2017
Liz L 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
"Thanks so much Mel. I'm a bit worried now as I will be spending a lot of time in the sun in January & February. I need to wear sunblock on my nose as I had radiotherapy a couple of years ago to remove a BCC. How can I check how the UltraSun…"
Dec 29, 2017
pauliegirl 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
"Hey Ladies! Interesting indeed that there is this consistent exposure to these chemicals among us. I think that some say they didn’t use sunscreen daily but holy bananas the chemicals that are in skin care and foundations etc often include…"
Dec 28, 2017
Mel 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
"Liz — I just looked up the Boots product on the EWG app and it scores a 6, not great. 1 is best. It has several petroleum-derived ingredients but, most interesting, I see it has retinyl palmitate. That’s also a common sunscreen…"
Dec 28, 2017
Liz L 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've used sunscreens heavily for many many years. Essential when I lived in the middle East for 20 years.FFA diagnosed 4 years ago. There is only 1 sunscreen I've found that doesn't bring me out in blotches- that is Ultrasun. Recently…"
Dec 28, 2017
pauliegirl liked lynetter's discussion Possible Burnout
Dec 27, 2017
pauliegirl replied to Jess's discussion Low Estrogen and Tamoxifen as Risk Factors in the group Frontal Fibrosing Alopecia
"No Tamoxofin or HRT for me. BC pills for a couple months only about age 20 then never again since and I am now 50. Among other changes I have made in my intake of food as well as products placed on my skin since awhile after FFA diagnosis is that I…"
Dec 21, 2017
pauliegirl replied to Jess's discussion Low Estrogen and Tamoxifen as Risk Factors in the group Frontal Fibrosing Alopecia
"Jess, no side effects it seems tho this is a relatively low dose. (20mg, which is what the research study participants took. I will say I had and continue to have a little bit of blemish breakouts but they say that is normal as accutane clears out…"
Dec 15, 2017
pauliegirl replied to Erika B's discussion biospy results in the group Frontal Fibrosing Alopecia
" Hello Erika, sorry you are in the midst of any and all of this alopecia business! My experience was that I had a biopsy and it was positive for FFA. My dermatologist did say that he had to get the biopsy from the correct place because…"
Dec 13, 2017
pauliegirl replied to Jess's discussion Low Estrogen and Tamoxifen as Risk Factors in the group Frontal Fibrosing Alopecia
"Very interesting, Jess—thanks for sharing! FYI I took BCPs for a couple months only back about age 20 and had pretty regular periods; am just officially menopausal. I have autoimmune conditions in the form of Raynauds and a “light”…"
Dec 12, 2017
pauliegirl and Jess are now friends
Dec 6, 2017
pauliegirl replied to Jess's discussion New Treatment Options in the group Frontal Fibrosing Alopecia
"Jess, I started the accutane 20 last Friday. No dryness issues but I already take good care of my body skin with EO’s and drink plenty of water. Anyways, it seems that things are pretty quiet at the top of my forehead which is where I’ve…"
Nov 8, 2017

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?
Telogen effluvium
Are you age 18 or older?
Yes - I am 18 or older

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