Frontal Fibrosing Alopecia

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Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

Location: Dubai UAE
Members: 496
Latest Activity: 1 hour ago

Discussion Forum

Decision to Shave

Started by DianeM. Last reply by ATB 1 hour ago. 5 Replies

Hi Everyone! If any of you decided to shave your head, at what point did you make that decision? I still have a fairly full head of hair but my hairline is turning into a 5head now and looks like it'll become a 6head in the next 6 months. I'm just…Continue

Tags: alopecia, scarring, shave, ffa

Information about upcoming international CICATRICIAL ALOPECIA RESEARCH FOUNDATION Conference

Started by Donelle 10 hours ago. 0 Replies

I am passing along information about the CICATRICIAL ALOPECIA RESEARCH FOUNDATION conference which will be held in Philadelphia June 8-10.  CARF is the only organization dedicated to finding a cure for these pernicious disorders.  For more check…Continue

New at FFA

Started by BubbaLu. Last reply by Ellen Apr 16. 13 Replies

Hello,I was just diagnosed with Frontal Fibrosing  Alopecia last week.  I had noticed small bumps along my hairline and thought it was eczema so tried zinc shampoo, steroid cream, etc.  Finally went to a dermatologist.  She first thought it was…Continue

Cosmetic procedures??

Started by AnnieMay. Last reply by Minter Apr 16. 6 Replies

Hi all-I'm one year out from the dreaded diagnosis of FFA. I've been reading everyones thoughts and it's true that I also feel like I'm no more certain about anything one year later. I've used a topical steroid but then my scalp feels on fire so I…Continue

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Comment by Halfbakedwho 8 hours ago

I don't have the sweating issue aside from the night-sweats of menopause. I don't have bumps on my face, though I have some acne right now (lovely at age 52!). Sometimes I get these weird floating numbness sensations - I swear I thought I was having a stroke - I looked it up - freaking menopause again...! 

I really hated Accutane - think I lasted a week on it. I felt all dry and strange. Apparently it's not good for people who have issues with depression, so I'll pass. I would rather have less hair and more sanity (though from my posts here you can assume that there's not much of that either). 

Comment by Jess 14 hours ago

Pauliegirl- I have a couple questions about your Accutane use. What is your dosage? Are the side effects still manageable? Last time I asked, I think you said you weren't really having any.

Finally, and most importantly (to me : )), are you seeing any difference in your facial skin? I can't remember if you said you had the weird skin texture or not.

My doctor said he would prescribe it to address the very fine bumps all over my face, but because I'm pre-menopausal, there are a ton of hoops to jump through, including using two forms of birth control for a month before starting (one systemic and one barrier), getting a pregnancy test one month before starting and again directly before starting, and then getting a pregnancy test every month thereafter. I would also have to call in every month to report to the FDA that I am using two forms of birth control. All of this is part of the "I pledge" progam. I would also have to get blood tests to monitor my liver functioning for the first two months. All of this would be out of pocket because my insurance will cover nothing related to alopecia, even scaring alopecia. So between the tests and medication, I'm looking at least $300 a month.

I put it off for now and was prescribed some metrolotion to address rosacea and in hopes that it might help the fine bumps as well. I'm also debating on getting a photofacial (laser treatment) to see if that helps. The place my dermatologist referred me to costs about $1000, though. This disease ain't cheap, lol!

Comment by pauliegirl yesterday

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 flashes. The hot flashes often cause sweating on trunk, arms even. Yuck. Am gonna ask functional med dr if he has any thoughts on balancing out meno-hormones.

Here is a weird question for you all: has anyone had sweat that actually changes the color of material in contact with it? i have ruined pillow cases and neck/chest areas of shirts with an almost bleaching effect of my sweat. Gross right? Hubby and I refer to it as my toxic sweat :/  I have often thought it was somehow related. I can remember it happening at least starting about 10 yrs ago. It seems like there could be a correlation, what with the theory that something has gone awry with our oil which messes with the follicles which causes hair loss. 

PS I am 5 months in on accutane. 4 months in on Actos. 6 weeks on the AIP diet (which, once you figure out how to cook and what to eat and various recipes, is actually not bad at all, and super duper healthy, too!). I can't say the loss has stopped but I am seeing less inflammation over the past 4 weeks or so. 

Carry on bravely, folks!

Comment by Minter yesterday

@Halfbakedwho, I am still "gluing" my sides down- I asked my hairdresser to cut 2- 3 inch-ish "sideburns" to pull forward in front of my ears and use Got To Be Glued or just hairspray (I spray it on my fingers and then style) I also use a hair balm or a mix of all or some of the above- depends how I style my hair that day or what I'm going to be doing.  I have to say I love pulling my long sides forward, feels very stylish and 60-ish and Audrey Hepburn or Goldie Hawn like haha!

Oh and I also use a darker hair powder in front of my ears where the hair is so thin and all of this helps disguise what is really happening- it is all smoke and mirrors at this point! ;-D

Comment by Minter yesterday

I am an excessive sweat-er too, but it has gotten slightly better since (I think, I hope) I might finally be out of menopause!

So will see how it goes this summer, though I am sure I will still be a dripping mess ;-/  Sometimes if I know it will be a sweaty-drippy day, I use Certain Dri roll-on deodorant along & inch or so into my hairline and I've also used 3B Face Saver (on Amazon) not  perfect solutions but it seems to help! 

Comment by Jules Australia yesterday

I wonder if we have extra sweating due to loss of the fine vellus facial hair, especially around the hairline on forehead/temples area & eyebrows which possibly would have previously 'soaked up' the usual sweating we may have had before the hairloss associated with ffa; & perhaps the inflammation exacerbates involvement of sweat glands in some way....who knows, trying to unravel this/make sense aof it all, sometimes 'does my head in'.....I know there Re worse things, but the relentless, chronic, progressive,recalcitrant nature of the disease is what makes it so begrudgingly difficult & frustrating....Sorry for the rant, whinge....juzt letting off steam!! Thx for listening! !

Comment by Jules Australia yesterday

Plf thanks for correlating....yes i have read that article, but I had just wanted to see how many others here had experienced the same sympton. It's so wierd, when it first started i was only a year or so out from when my bizaar scalp symptons started at end 2012 & initially I wasn't sure if it was just me, menopause or what, but my gut feeling was telling me ' yep, i think this is another ghastly sympton of this b@#s#ard disease' ...just what we all need, as if life wasn't already challenging enough living with the loss & discomfort. PBSunshine, Plf took the words right out of my mouth, i wondered same, where do you live?....I agree with you that it often feels like such a lonely disease/disorder as no-one can really relate to or truly understand what it's like dealing with these awful symptons day-in, day-out(although they can at times wax & wane) unless they've experienced it themselves!....I feel for everyone here who has to putup with it progressively & chronically, not having any idea when the hec it will 'give up' & STOP!!!!

Comment by Halfbakedwho yesterday

It’s strange but the French alopecia groups are practically non-existent. Here we are a lot more private about practically everything so I guess it’s not so strange. I can relate PB sunshine to you wanting to meet people. Obviously, given your name, you don’t live in grainy-grey France. 

I am so incredibly grateful to have this group to write to (more like vent... « write » sounds too civilized). 

It’s a year after my diagnosis this month. There’s definitely more hair loss. I am no longer waking up freaking out, thinking this must just be a bad dream (though sometimes I still wish it were just a f-ing dream). I am not trying to not eat gluten (dairy, sugar, caffeine, meat, large and small insects, leaves...) (am kidding about the last two, mostly). I am probably too cavalier at times with putting crap on my scalp, and taking iron. At night I am scared of how I’ll look in the years to come. 

As if - the people who love me will no longer love me? As if - I’ll become even more invisible as a woman (maybe not an entirely bad thing?)... As if - this will impact how I am seen in my profession? 

My loving crazy-ass husband is an Alopecia Areata - not a hair to be seen ANYwhere. And I promise you, he DON’T care, not one little whit. What is a whit? Yes he looks a bit odd (no eyebrows, eyelashes, etc.) but it wouldn’t occur to him to think that others wouldn’t love him, or respect him in his work, or would make him invisible out in the world. 

Just my two euros this morning, not sure where I’m going with this. 

Comment by Plf yesterday

Where do you live PB sunshine?

Comment by Plf yesterday

Hi Jules, I read an article on this..just google frontal fibrosing alopecia and increased scalp sweating:is neurogenic inflammation the common link? Harries Wong & farrant.  Another horrid part of the disease..it's relentless, I feel your pain

 

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