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Comment by Jules Australia on May 8, 2018 at 3:20am

HBW.,  there are basically 3 forms/types of LPP (Lichen planopilaris, sometimes referred to as Follicular Lichen Planus):- Classic LPP, Frontal Fibrosing Alopecia (FFA), & Graham-Little-Picardi-Lasseur syndrome/GLPLS. If you google LPP you will find explanation of differences, but essencially the three are distinguished mainly by the pattern of involvement and location. When I was referring to going to bed & 4getting about it for 7 or 8 hours, because I mostly seem to sleep pretty well, so it is a relief not having to think about it, & I don't know, I just find in early evening I can relax, glass of red wine helps (I only have 2 or 3 glasses about 3 nights/week - Fri, Sat, & Sun, generally, unless I feel the need during the week, then I'll have one or two, it's not 'set in stone'). I just find that as it continues to creep back from front & templet, sides, all around my ears, and also diffusely all over, that facing it first thing in morning is the worst, espec when I have no eyebrows left (will get around to microblading, just haven't, for various reasons, done so yet)....as my hair generally is naturally wavy/curly it really needs to be either sprayed or wet in shower for curls to spring back (which does help to a certain extent cover the loss a little more) as it tends to flatten out a bit overnight... I am pretty gentle, don't muck around with it much, just let it dry naturally....From last year around mid March,out of the blue I had a flare of the horrible pain, tenderness & lots of those minute sore papules over many areas of my scalp, the sensory symptons are bizarre & hard to describe to someone who hasn't experienced it but they are ghastly, horrible feelings...it is only in the last month I've found that it has eased off a lot....was pretty bad for about first 6 to 8 months, when I started  to get less & less of the sore papules over nxt 4 to 6 mths. I had a lot of these awful sensations for the first 18mths (from early Oct'12)when I first felt them along with the sudden hair loss, then from about March2014 to around March2015 the scalp sensations slowly eased off, & from M2015 to March 2017 I coped so much better that I actually stopped the anti-anx/depressants, weaned myself off them, for almost 2 years....(I knew it was still active as my scalp still had some slight itching but sensations overall were much more subdued, & I had continued hairloss from front, but it was very very slow)......then BAM, mid March 2017, the flare-up........no rhyme or reason for me, cannot relate it to any extra stress than normal day to day.....Nothing has ever stressed me out more than the symptons of this disorder, the weird pattern of hairloss is bad enough, but the eerie, painful scalp sensations, when so persistent, are a whole other thing to deal with, they can almost drive a person CRAZY.....!!! 

Comment by Wyobalance on May 7, 2018 at 11:26pm

Halfbaked, almost everyone with Cicatricial (scarring) Alopecia has LPP (Lichen Planus Pilaris) on biopsy.  Don't ask me what LPP looks like under the microscope or what it even is.  Another misnomer, it is not lichen.  Thus, since most everyone has LPP, they should label it by location.  

I sometimes (though rarely) hear someone or their doc say they have "burned out", or are in remission.  However, I do not hear that they confirm it via biopsy.  I would say that is the only way to prove this freaky condition has halted.

CurlyK I look forward to meeting you at the CARF Conference!!  We will have to add our alias to our name tags.

Comment by BubbaLu on May 7, 2018 at 5:54pm

For those who still have eyebrows, I have found a cosmetic that works pretty well.  My eye brows are definitely thinning.  Trish McEvoy cosmetics has eye brow mascara (I got the lightest shade, don’t want to scare anybody) and before you apply the mascara, you apply her clear wax pencil.  The wax thickens your eyebrows before the eyebrow mascara.  It’s not perfect but is somewhat effective.   Then I fill in a little with a taupe pencil.  

Comment by Halfbakedwho on May 7, 2018 at 4:59pm

 Oh thank you for being here - all of you : ). Welcome back Cubbieblue. 

As for me - I too was confused as to what exactly I have. I have lost my sideburns, and the top of my forehead is a couple of fingers higher than before. Nothing else. Still got eyebrows. BUT - yes, weird bumps especially on the top of my head. AND- I no longer have any sensation on the skin where I’ve lost hair. It seemed to be « FFA » but not « LLP ». 

So, Jules, you are saying that it’s *all* LLP, but just different forms? 

Afraid, I really refuse to take anything internally. I am paranoid about side effects, I am incredibly anxious and obsessive too. 

Jules - does it take a lot of work in the morning to fix your hair... is that what you’re referring to when you say at the end of the day you finally get a break? I feel the most freaky at night - it’s when I feel like this just is so unreal, and how can this be happening? And even though I know I shouldn’t go there, I wonder how the hell I’m going to cover this up. Now that I see how it’s evolved over the past few years - no illusions that I won’t look pretty odd in a couple of years. 

On a more positive note, I love the program that CARF is presenting, and really wish I could go. The irony is I will be in the States, in D.C., a week later! THere are so many interesting things in that conference. I hope that CurlyK you won’t mind presenting as best you can pretty much everything ; ).

For example, « The Usefulness of a Scalp Biopsy ». I have been resisting this. I would like to know!! Why is it useful to poke a hole in my scalp? Will « they » learn something from this?

Laser treatments...?? Interested. Optimizing nutrition for hair growth? YES.  And the Mind-Body connection, the Compouding Pharmacy, And of Course the Camouflage. What sort of tatoo should I get on my scalp? (Don’t need eyebrows...Yet). 

On my scalp it will say... « Hair was here. » Or I will get an environmental camouflage tatoo. Since where I live it is mostly gray all the time, my tatoo should be gray, to blend in. But still want the bearded guy for extra protection and warmth in cold weather. Maybe if it’s sunny where you live, your tatoo should be sky blue. Your former hair is thereby camouflaged and no one notices anything but your lovely face, floating in the « sky ». This makes me think of that Teletubbies baby-sun- remember that? And this is me WITHOUT red wine...

Comment by cubbieblue on May 7, 2018 at 4:01pm

Hello.  I haven't written in quite a while, but I almost choked on my red wine when I saw some of you mentioning red wine.  My symptoms started, oddly enough, after my drink of choice changed to red wine after years of drinking beer.  Please tell it's not the trigger!  I simply must find something else to blame this on. ;-/  Here's another one I heard as a possible trigger:  beta blockers.   Anyone else start beta blockers around the appearance of your first symptoms?

Comment by Afraid on May 7, 2018 at 6:16am

Hi does anyone experience burning/stinging from head to toe? I think I’m going crazy with worry about what other conditions are lurking in my once healthy body?!  Could it be the medication hydroxychloroquine? the condition? Anxiety caused by the condition or symptom of menopause or hrt? Oh help!?? X 

Comment by Pascal on May 6, 2018 at 10:28am

LPP/FFA implies that we can also experience hairloss on other parts of the scalp, not only the outer hairline? That's what scares me the most...

Comment by Pascal on May 6, 2018 at 10:23am

Thank you very much for your answer Jules Australia and Wyobalance :*

Comment by Plf on May 6, 2018 at 5:55am

Thanks Jules....well said..and red wine is my current medication for FFA...well for today at least..having FFA is certainly a rollercoaster ride...as Jules said, pour another red wine and celebrate good friendships families and sunshine...feeling positive today

Comment by Jules Australia on May 6, 2018 at 4:51am

Pascal, that is such a good question.....& Wyobalance, I think you are 'spot on'. From my understanding, it seems to be the location on scalp which is relevant as to what type of LPP (lichenplanopilaris) the patient has (as described by researchers); either FFA (frontal loss, temples,sideburns, all around ears, basically in a band-like pattern, sometimes nape of neck as well; often accompanied by eyebrow,eyelash,facial arm & leg hair loss, & sometimes accompanied by sensory sympton.). Then there are patients who have just what I have read termed as "classic LPP" which can occur on any part of the scalp, but usually affects the vertex region & can either be patchy or diffuse, usually accompanied by minute papules (pimply like lumps at top of follicle), often with itching, burning, pain & tenderness.....but without the frontal,typical band-like hairloss seen in frontal fibrosing alopedia. However, their are others who seem to have both these areas of loss at same time, quite often accompanied by odd scalp sensations (as described) & so I guess that's where the literature describes those patients who have both FFA & LPP concomitantly. So much of what I've seen written about this disease/disorder often appears contradictory.....some articles say that while most scientists believe FFA & LPP are the same entity, a few believe they are slightly different (histopathologically). All I know is that living with either one or both types of LPP (of which I believe I have both, ffa & diffuse lpp)....well it just simply SUCKS!! I think the scientists/researchers have a lot more to learn & seem to have NO IDEA why some patients suffer the sensory symptons (itching, burning, prickly, creepy crawly, pain, tenderness etc), & yet others are asymptomatic (other than the chronic, progressive hairless). It really does do my 'head in' at times!!! Mind-boggling, bizarre,infuriating, frustrating are just a few words that come to mind....Time for some red wine,watchigt the orange sky as the sun goes down.....Then a good sleep, just to not have to think about it for the next 7 -8 hours....until awakening,...then voila, sunrise & having to cope with it all again for another 15/16 hrs or so......What a life! C'est la vie (for some of us).....I hate it!!! But here we are, all in the same boat, struggling, some more than others, to make sense of it all, wondering, waiting, why, how, when it will end??!! 

Considering what we all have to endure, living with this b#st#rd disorder, I thank you all for validating that my/our emotions, reactions, general feelings, anxieties etc are normal, & not an over-reaction. If we couldn't connect to each other (in this modern day and age) via this internet forum, although I TRY hard to go on & enjoy life as best I can, I think I would have possibly become a 'basket-case' by now, as this can be a lonely disease to live with.... Thankyou all again for being here xxx  

Ps: dusk approaching, time for some more red wine  

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