Where do you live PB sunshine?

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. 

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!!!!

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! !

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! 

@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

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!

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!

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). 

Maybe a odd question, I have had 2 identified flare ups on my scalp ..could be more that I just haven't noticed..is it only during the inflamed red times that you actually loose hair, or is it happening every day./?..

Plf,

i am no expert.  I had two plugs taken for biopsy last week and get the stitch out tomorrow, results were positive.   I have a band of redness.  My dermatologist is giving me injections tomorrow to “calm down the inflammation and tell the autoimmune to leave your hair alone!”   I believe the redness occurs while it is killing the hair follicle.    After it is successful the hair falls out. After 6 weeks I go back for an exam to see how well the injections work.  I am lucky this was diagnosed early so I have not lost much hair yet and hopeful it can be put into remission.  

I have been consuming organic lemon juice for 3 years now.  I don't leave home without it.  I read somewhere recently that lemon is too acidic to consume and could cause problems for FFA .  What the heck!!  Has anyone else heard this?

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 practitioners still subscribe to the higher-is-better dosing of accutane for acne and patients are left horribly dried out. My derm has been prescribing it since the 80's and said that is a shame since it can be very effective at lower doses. As well, he said the "link" to depression is questionable. Very very rarely sees liver involvement. Hope that is helpful! The iPledge stuff is unfortunately mandatory and a huge pain for pre-meno women. 

The big question: has it helped? Soooo hard to say as I have had some loss at the front/top while on it but have recently seen more periods of low/no inflammation. Between meds and now the AIP diet I have so many variables at play I can't say. The Poland study noted the ~75% success rate of halting progression AFTER the accutane was taken for a year and then stopped. I am on month 5. 

I may have had some mild facial papules at the temples; no sign of that anymore. That one study, though with only 3 patients, showed excellent results on the accutane. 

In the medical profession, I am not suggesting unethical stuff, but can't your derm throw you a bone and diagnose with acne so ins will cover? Honestly, I want to invite insurance companies over to our homes to live with us for a couple days as we are dealing with this disease and they can then tell us why we can't have medicine that might help us covered! Otherwise, have you checked with Costco or Sams or GoodRx for the best price?

Pauliegirl- I wish! He seemed reluctant to code my last appointment as being for rosacea since I also inquired about the isotretinoin for the bumps. I think the only reason he did was because he ultimately only prescribed medicine that's labeled for rosacea. The best price I can find is through Costco and it is still well over $200. Ugh. I came across one study that showed some success with antimalarials/antibiotics. If this metrolotion doesn't work, I may head in that direction along with some laser treatments. 

Having said that, I thought my loss had pretty much stalled with the Dutasteride, but now I'm thinking I've lost some more in front of my right ear. I know the isotretinoin showed good results with stalling FFA in general, not just the bumps, so maybe I'll change my mind if it worsens. Either way, it's all pretty frustrating. I hope they figure something definitive out soon!

My daughter recently spoke with her dermatologist about my newly diagnosed (yes, biopsy confirmed) condition.  Her dermatologist had just been at a conference, one of the topics was the suspicion that fillers (Juvederm) has been associated in more and more cases with auto immune disorders. That derm is now screening people before injecting with fillers.  However, I must have had a dormant autoimmune, I would not have known before this showed up.     About 10 months after I had my first and only Juvederm, my cheeks flared, were hot, itchy, then scaled and peeled.   This happened 3-4 times in a matter of months.  At the end of these flare ups my FFA began.   I am convinced the Juvederm was the beginning to all my problems.  The autoimmune was attacking the Juvederm then when it was gone moved on to my scalp.  I will not be surprised to find a class action law suit against the product.  Have you heard anything about this?

wow... I love the fillers and had them a couple of years ago. However, my hair loss started about a year before I had fillers for the first time. Since then, it's so expensive that I have had nothing since fall of 16. I didn't have any bad reactions though.

My Doctor (the Famous Man) in Paris called me back last week and laconically informed me that my current inflammation couldn't be helped, and to continue down the same path he'd prescribed. Not that I was expecting anything else. It would seem he's resigned to the thing "burning itself out" (whenever that would be) so he could proceed to the hair-graft treatment. 

Someone on the FB page was talking about getting a clear diagnosis on whether the follicles are entirely destroyed in the FFA or just damaged, in which case it would be possible to reanimate them??? It seems to me that the doctors - knowing they can't cure it and they can barely slow this mess down- aren't really current in the literature, and don't seem to care that they're not current. We're not dying, we're middle-aged women, who the hell cares... : (  ?  

If any of you are going to the CARF conference, I hope you could post some of the things you learn there. I wish I could go - that would be amazing. 

Ha halfbakedwho..I think your spot on..went to the gp tonight so she could tell me the outcome of my pharmaceutical review..first she couldn't find the report and then said it contained nothing new...she still had nil knowledge of the condition..now I work in health..not at a dr level..but if a Client came to me in December with a condition I didn't know I would at least do some internet/ medical research ..I would be curious..not so.. so today again I am being brave nil meds..keep my liver safe..until my eyebrows fall out on my pillow or I lose another cm from the front .  Have started spearmint tea infusions..will let you know how it goes

Does anyone really know what the first symptom is? I lost my eyebrows years ago arm hair long before that. Early 2017 started losing my eyelashes. Thought it was because I have dry eye. After years of Derm and eye dr. appointments no one connected the dots until late 2017 when I went to my derm about my sore scalp and hair loss.

I have decided to do botox for the first time. I've read some older comments on botox. Juvedirm looks bad. But, anyone doing botox currently? 

Thank you,

hi PBsunshine1, interesting re progression on the disease, it is hard to say but Ia hairdresser noticed the inflammation at the front of my hair line probably about 4 years ago, I treated it with some cortisone cream I had at home and it settled, It wasn't painful or itchy and if she hadn't pointed it out I wouldn't have noticed.  as for eyebrow thinning it has probably been occurring for about the last 6 years at least.  Loss of arm hair 18 mths ago, still have eyelashes, major hair loss last Christmas..again not associated with itchiness or pain..hope this helps

Halfbakedwho I wish you could make  it to the CARF conference.  Maybe you can attend the next one and be a presenter.  Your posts are hilarious!  

It's not on the conference agenda, but there will be a Show & Share session after lunch on Sunday.  A patient get-together to Show items, and Share ideas for camouflage.

There is also a Friday night reception.

Here's the CARF Conference agenda (Philadelphia June 8-10)

http://www.carfintl.org/_docs/Patient_Doctor_Conference_2018_Progra...

And the online registration

https://interland3.donorperfect.net/weblink/WebLink.aspx?name=E3430...

I’m going to the CARF conference! I can’t wait to actually meet people with the same condition that I have! No one understands like all of you do. 

If you have any questions you are interested in hearing more about, let me know and I’ll make a list and see what answers I can get there. 

CurlyK,

please look at my comment beliw regarding Juvaderm.  I feel it was ABDOLUTELY the catalyst for my FFA.    

Juvaderm is different from Botox, right?

I have had Botox for years and never had a problem.  Only when I had Juvaderm did I have an issue.   

They are not the same.   

I’m heading to bed with one red ear. This stupid stuff. I’ll never understand why it flares the way it does!

New experiment: I’m taking 600mg of N-acetylcysteine (NAC) 3 times a week. It’s a powerful antioxidant and offers protection to kidneys and the liver (counteracts the use of Clobetasol, maybe). It has anti inflammatory properties too. So, I see both my nephrologist (who said I could take it) and dermatologist in 6 months. We’ll see if it helps or not.

@CurlyK I’d like to know how many have stopped treatment because they feel it’s futile-and if there is any proof at all that the drugs that are prescribed do any good. Maybe not a question but an observation of what you hear from the people you meet there.

@CurlyK, I'd like to know the same as illustr8r's great question please, along with the burnout or progression rates compared to people who do not use anything for treatment to people who do-

& one more question, what is the rate or occurrence of family members with FFA, mothers/fathers-daughters/sons-sisters/brothers.  My mother has it, her parents did not and none of my siblings have it. 

Thanks for sort of taking us along with you in this way to CARF!

@ BubbaLu, I had Juvaderm only once 10 years ago and that was years before FFA made it's appearance :-(

Yes, I third the question illust8r asked! And Plf, you are infusing yourself with spearmint tea? 

I would love all the info on camouflage (though that sounds kind of funny to me, though that could just be me. To hide in the woods I wear green and khaki clothes to blend into the surroundings. To hide my bare scalp, should I only hang out with bald people? Or stand really close to people with a lot of hair? Conundrum.)

I would also be interested to know if there's a common pattern to the hair loss. For example, I am only losing (knock wood) hair on my head so far, in the front, at about a half-centimeter every couple of months or so. (not that I measure, yuck). Other people have talked about losing eyebrows first, or arm hair first. 

I have no other health or auto-immune issues. No rosacea, no bad allergies, no thyroid problems... is it more or less common to have "nothing but" FFA, or is it more frequently associated with other illnesses? 

Minter's burnout question is very good too. I think "they" (doctors, researchers, etc.) have NO idea - I think they talk about "burnout" so we don't totally "freak" out. Infantilizing. I would prefer the brutal truth - that they just freaking don't KNOW. I can take it. Especially if I can please keep my eyebrows. But they don't know that either I suppose. 

The hair loss at the top of my head makes my hair look strangely flat there, with a lot of thickness on the sides and back. If I stand under a man with a beard, does that count as camouflage?

Sorry... 

 Hello all. I have had diagnosed FFA for 4 or 5 years and symptoms going back farther than that. I had hair loss in the back hair line and the front with almost an inch hair loss in both directions. I have zero eyebrows (now microbladed) and very little to no body hair. I have never opted to use medicine in this disease except for one round of steroid injections around my entire hair line(front and back) that left huge holes in my forehead-which I hated. I have all kinds of reactions to medicines and have tried to stay off of any except for my thyroid medication. About a year or two ago I noticed that the irritated red bumpy rash in the back was gone and it stayed gone. I have not had an issue since. (Burn Out?). Now I have had a clearing up in the front as well for about 7 or 8 months. Though I do not have hair growth where I had hair loss, my entire hair consistency is back to normal and seems fuller. I have not had any worsening hair loss since.  I have no idea if this is burn out or not but I just wanted to share. The only thing I have done differently since having this disease is to stop salon coloring treatments and all sunscreen near my face or hairline. 

Halfbaked... you always make me laugh and laugh. Thanks I need that!

Your hilarious halfbakedwho, humour is always good..bathing in the tea..

No just three cups a day, apparently it takes a month before you see results..good luck Lynetter hope you r one of the lucky ones whom has managed to banish the disease...

Curly K, I would like to ask same questions as Illustr8r & Minter, I have never taken any of medications suggested/offered by Derms (other than some topical corticosteroid cream for scalp within first yearof symptons back in 2013 - absolutely usless! The derm gave me a script for 6 tubes PLUS 6 repeats & sent on my merry NOT way) and when I asked "shouldn't I make another appointment", he said "Not unless you have to, your hair looks alright"; almost as useless advice as the medication itself. I believe they just say try this or that & if it slows or improves they say meds are working, if it doesn't they suggest something else, & say it works for some of their patients, not everyone; how could they know for sure  its the meds or just the natural course of wax/wane. Anyway, like Minter & Liz plus others my Mum also has ffa, but no-one else in family,I have 3 sisters that have no sign, my Dad still had full head of hair at 77 when he passed away.I am 60 Oct, my Mum is 89, but she had no signs of ffa 'til about 6/7 years ago (interestingly around similar time to when mine started). So myself around 53/54 and Mum was ab. 82/83 when signs first appeared. Mum has the loss but not the pain itchiness/tender discomfort that I have experienced. And last, but not least thankyou, thanku, thankuu! to halfbakedwho for making me laugh & giving me those wonderful, invaluable doses of dopamine in your comments, keep it up, your wonderful sense of humour helps to keep me going, including support from everyone here, so much appreciated.T H A N K S   Jules                

Oh these are such great questions! I promise I will do my best to bring back good information. Thank you Halfbakedwho for making me laugh... oh how I needed that! As I got caught up reading everyone’s posts, laughter turned to watery eyes as I’m once again reminded how cruel this disease is and how few answers we all really have. Hugs to everyone tonight. 

No idea what I would do if I didn't have all of you. Having a very down day so I'm hoping that there might be some discussion on not just the medical side of this but the psychological effect this has on all of us as well. . .

@ AnnieMay, yes another good question- the psychological effect of FFA and how some or maybe a lot of us are just dismissed by the doctors as middle-aged women with menopausal or just "old aging" hairloss :-(  

@Halfbakedwho, you are so funny! Now I need to find a tall man with a long beard  .... maybe search out the ZZ Top ;-D

Hi all, I have been suffering with FFA for around five years (finally confirmed by biopsy in 2017). I was given Hydroxychloroquine 200mg together with Synalar gel in 2016, also painful steroid injections, of course none of this worked!  I was told to increase the dosage of the Hydroxychloroquine to two daily in November 2017 within a week I was suffering from high blood pressure (not shown as a side effect??) and became increasing breathless. I was eventually told to stop taking them, they really hadn't helped and one of the side effects is in fact hair LOSS! So back to the drawing board. Now I am taking Doxycycline 100mg daily for six months together with Elocon scalp lotion. Of course no signs of any change as yet. 

The lotion seems to make the area slightly sore, does anyone else have this side effect? it smells awful and does not seems soothing in any way unlike when I was using the Synalar gel.

My hair loss has definitely got worse over the past year and as everyone on here knows its quite depressing not knowing where it will all end!

Thanks curlyk for offering to take a list of questions to the conference.  I think most queries have been raised by others but I would reiterate concerns re psychological impact of the condition.  I would be interested in whether someone would be able to analyse the main themes that have emerged from our posts...I think we provide valuable information and we ask pertinent questions.  I don’t think we are listened too on an individual basis.   I would also be interested in knowing a timeline...whilst I appreciate our individual responses differ surely they can provide some information drawn from their clinical work and give some examples of timelines of progression??  They must surely be able to provide us with more relevant data. 

Many thanks 

All -- I have not written for a while as nothing has really changed for me other than a continuation of the loss.  It is finally warming up in the midwest and once again the thought of summer and all the hassle and changes and how do I deal with my "hair" is frustrating, as summer was always my favorite of the seasons.  I have graduated from larger and larger hair pieces all taped in the front to trying a light weight wig which should not need tape.  Hoping that helps with the hassle of everything, the itching and irritation, and speed of preparation while getting dressed.  Will advise on that.  Also learned from my hair specialist what my derm needs to do to hopefully get our insurance to help in payment for some of this.  Will advise.  I learned it has to do with how the prescription for a cranial prosthetis is coded.  All in all this continues to be a mess, nothing you can ever be prepared for, a total change in lifestyle and approach to aging and finally just sucks!  No medicine, no cure, no way of moving beyond as continually reminded day after day.  

I will let you know how the wig goes.  I have been a proponent of the topper pieces which have worked for me for the last four years (buying a new one each year as the condition progresses).  Let's see what's next.

Today I am feeling everything you are going thru you are not alone :( I hope we both have better days ahead. Hugs

Hi sad in Chicago andPB sunshine 1, take care and thinking of you both...just when you think you have it sorted..the whole horrid thing fills all your thought process es, .feeling your pain

I am on a trip with my husband to visit friends at St Simon’s GA, because of my FFA this is the first time I remember feeling so unattractive.   I don’t even think anyone else noticed, but the psychological effect of this condition is dominating my psyche.  

BubbaLu- I SOOOOOO understand. . .

I am too encouraged here with the dumb jokes, but I appreciate being one of the forum comédiennes. 

SadinChicago, I hear you, and what you describe as well as BubbaLu seems to be getting closer for me. My hair, to me, looks strange. The top is thick and balding - at the same time...! I am trying to stick my thicker curls on top of the receding hairline which means pulling my hair forward, but you can see where the hairline starts too far back underneath. To me, I look a bit like a frog (which maybe goes with where I live). A frog b/c it kind of makes me have a long flat forehead look with my hair pulled out in front - a bit like Kermit. 

So I'm feeling resigned, kind of angry, kind of (still) incredulous that this is happening at all though it's been a year since my diagnosis. 

So, the idea is to get a "camouflage man" who is camouflage AND a bodyguard sort of thing. A big guy with a beard, who stands behind you all the time (or you can sit on his lap as needed).  You adjust his beard on your head, maybe with some barrettes. You feel also quite safe and comforted, and he should be clean and smell nice. You no longer have to fear the dark corners or bad neighborhoods. I may be on to something, n'est-ce-pas? 

Well no brave plf, cancelled due appointment and the rang today to keep..

Last option..to medicate or not too..

I agree with Annie May & others ... the psychological impact seems to be a common & significant burden many of us carry living with the symptons of lpp/ffa. It should be recognised and taken more seriously by medical practitioners. It seems that so many of us, including myself have had to resort to anti-anxiety/depressants, directly related to the negative effects this disorder has on our psychie and general quality of life...the fact that it is chronic, the relentless progression of loss, degradation of hair quality & skin issues...the continual tiresome adjustments we have to make dealing with camoflauging the bizaar progressive aesthetic changes or just trying to look normal...Not to mention those of us who also experience terrible scalp discomfort/sensations, which can be quite haunting & a continual reminder that the disease is active, still lingering (with little or no effective relief)........seems never-ending!

I found these articles/abstracts describing the psychological impact &  quality of life effects on patients with cicatricial (scarring) alopecia which might be of interest :-        ncbi.nlm.nih.gov/pmc/articles/PMC3276897/    (Psychological Impact of Cicatricial Alopecias)   ncbi.nlm.nih.gov/pubmed/25597233/  (Quality of Life & Psychological Impact of Scarring & non-scarring alopecia in women)   Also another article  "Lichen Planopilaris Update on diagnosis & treatment" describes quote " This condition can have major psychological consequences for affected patients; therapeutic management often is quite challenging, as relapses are common after local or systemic treatments; Further research needed on pathogenesis, & randomized controlled trials of treatment with scientific evaluation of results necessary to appreciate the proposed treatment"......."symptons have high morbidity & distress in patients"   from:-   ncbi.nlm.nih.gov/pubmed/19341936   I also found another article headed "Clinical Description of Frontal Fibrosing Alopecia with Concomitant Lichen Planopilars" www.karger.com/article/fulltext/479799   This describes that some patients who seem to have both ffa & lpp elsewhere on scalp could have a higher susceptibility to producing intense lichenoid reactions than patients with isolated FFA or LPP. An intense inflammatory reaction could worsen the symptons in these patients, & this might explain the higher percentage of patients with pruritus(itchiness) & pain found in the study. Sorry, hope its not an overload of info, but, at least for myself, the only way I can try & make sense of all of this (& I haven't got there yet), is to research, because, funnily enough, I'm not going to find the answers from Doctor Visits. Anyway, hopefully some here might find the info interesting. thx for listening  xx

Minter, I loved your reply to halfbakedwho about finding a ZZTop member or similar.....    halfbakedwho, my husband loved your imaginative camoflauging ideas/queries ..... now you have me thinking as he has a beard, maybe I could put him to use on that front.....hmmmm.. have to at least give it some thought.....Friday evening here in Qld/Australia...'.red wine & blue cheese on crackers time, watching the red/orange sunset'...cheers for now    

Thanks Jules for all your homework and heartfelt post...you certainly capture how we all feel, 

@Jules Australia, looks like you already are set with a bearded one! I also want to thank you for taking the time to write your post, same as @Plf says it really does echo how most of us, well me for sure- feel about this stupid FFA. 

PS.... @Jules -  wine and crackers with a red and orange sunset in Australia, it all just sounds so very lovely :-) 

Happy Friday :) and thank you all until I found this online site I felt all alone in the world. I am single and appreciate that there are others who understand this issue, and can even help me smile. Anyone know a single bearded man??? LOL

Hugs