"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…"
"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…"
"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…"
"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,…"
"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…"
"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…"
"@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…"
"@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…"
"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,…"
"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…"
" 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…"
"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.…"
"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…"
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!
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