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Comment by Minter on March 4, 2019 at 8:05am

I have, well, I mean I had light blonde hair on my arms as well which is why I think it may have taken so long for me to finally realize it was no longer there.  

Thanks for mentioning the Rogaine, I have a feeling I would be the same- not being too very faithful in using it every day. So perhaps it will not be for me and to be honest, what is the point at this point really.  

I am sorry you are feeling down Kandy15.

FFA really, really, SUCKS. 

Comment by Kandy15 on March 3, 2019 at 4:42pm

I have lost most of my leg and arm hair as well.  Like Mary, I have very light hair on my arms but to see it I have to hold my arm up to the light to look for it.  Too bad that this disease hasn't effected the hair under my armpits. Still have to shave there all the time.  

I have used Rogaine on and off for many months.  Maybe if I used it everyday like the instructions say I would see a difference in my thinning hair but I haven't been faithful to it.  I guess what is so irritating about the oral medications we take and the topical lotions/foams/ointments that we use is that they all take 6 - 12 -18 months before we could see any results.  In the meantime my hairline keeps receding back at a pretty alarming rate.  Once it's gone, it's gone so what good is something that isn't going to help me for 12 months?  I have a picture of my daughter and I at the beach in September when I had not lost any hair at the front hairline. The rash started in November and I have lost about 3/4" in just that short time.  I had already lost 1 -2 inches on the sides of my head about three years ago but was able to hide it with my longish hair.  Now I have shorter hair so I could have bangs to try to cover up the front hairline.  So distressing for all of us who battle against this stupid disease every day, trying to do what it takes to look and feel somewhat normal. 

Feeling yucky today.......    

Comment by Mary on March 3, 2019 at 4:00pm

I have have very dry, itchy eyes--I use eyedrops called Systane Balance which are available in the USA as over-the-counter without a prescription.  They were recommended by my optometrist.  I've noticed that a lot of posts discuss sunscreens.  We spend a LOT of time in the tropics and I found this wonderful line of clothing that was developed by a physician for people with sun sensitivities.  The website is https://www.sunprecautions.com/ and I love using their swimwear because I don't have to use sunscreen anywhere except the tips of my ears.  Now that my FFA is active again, I seem to be itching everywhere.  Also, in response to questions about hair loss in general--I  have lost almost all leg and arm hair--just have a few little wisps that are hardly noticeable unless you are looking for them.  Most "private" hair is also gone.  I hate,  hate,  hate this condition.

Comment by Minter on March 3, 2019 at 7:44am

Hugs to you as well Jules Australia! Looking forward to my MOOOOOOOGOOOOOOOOO arrival! :-D   

They say the Lord doesn't give you any more of a burden then he thinks you can bear, so seriously how strong does he think we are to have to deal with this day in and day out!?! Actually if that is true,  I guess that makes us all pretty tough broads to be able to cope with this stupid FFA day in and day out. 

I don't have any arm hair and the hair on my calves is mostly gone but still is pretty much normal on my thighs and everywhere else.  Actually that is how I realized something was not right- when I looked at my arms one day and saw I had no hair, what the heck?  How I never noticed it going away prior to that day, I'll never know. I had the intense itchy flareups starting about a year before I noticed the missing arm hair.  So that is what sent me into the world of Dr Google and then to actual doctors and then eventually to you all, who are fabulous by the way! I would be a blubbering mess if it weren't for this forum not knowing what is happening to me.  

I have my yearly dermatologist appointment this week- she's got me coming in once a year now just for my normal check up since I don't take any prescription medication there is no reason to go in and spend the time and money unless something unusual occurs :-/

Going to finally ask about Latisse for my brows/lashes as I don't want to lose those too and have been wondering about Rogain/Minoxicil if it might 'thicken up' the thinning hair on top of my head- or will all of this be just useless efforts to stem the inevitable!!!  

Comment by Jules Australia on March 3, 2019 at 7:09am

Illustr8r,  I wholeheartedly agree with your feeling when you said "It's just a wierd emotional & physical roller-coaster I wish I wasn't on. ..I get tired of trying to be positive some days".....SAME, SAME, SAME. I FEEL, FEEL, FEEL it tooo. I too wish I could GET OFF the roller-coaster, gain back my self-cofidence & sense of peace/well being (which I mostly had as part of me before lpp/ffa).... At times it feels like this disease with its waxing/waning, & slow chronic  progression, is haunting me, it is literally in your face, so to speak, every waking morning. ... trying to stay consistently positive can sometimes be draining & 'wear you down'.... But somehow we all have to keep going, trying, what choice do we have. Once again, I am just so so thankful, grateful for the support of this forum ..... HUGS to you ALL !!

Comment by Jules Australia on March 3, 2019 at 6:32am

Minter & Kandy15, I wondered, do you still have arm & leg hair ornhave you lost hair there also, & have you lost eyelashes as well as eyebrows? I have lost ALL! During the year prior to my sudden onset of intense/wierd scalp sensations along with hairlossalong frontal & temoral hairline (in Oct 2012), I had a lot of annoying itching (on & off) for months on my lower legs....I'm pretty sure at that time I noticed that I had already lost most of my leg hair (no more shaving, haa, one positive).....still, would prefer to have hair there with NO itching or ffa/lpp! than no leg hair plus itching WITH ffa!!! Also this was the time I was losing my eyebrows also. Then, sometime in 2015 I had very itchy forearms with reddish blotches, turned scaley. A friend of mine who suffers with excema (she is 70 & had it for many years, & gets very itchy with it) said she thought that's what it looked like on my arms. The itchiness was extremely irritable & intense, lasted for 3 weeks, then disappeared & ('touch wood') I haven't had it again. But it was truly awful & so I really feel for you Minter, Kandy15, & others having to deal with this symptom, especially on a recurring 'flareup' basis. Lately my eyelids & especially along where the eyelashes should be  (i have a few left, but have lost most) have been irritably itchy, & one eyelid more red than usual. Also have been getting little pinkish red round flat spots on face ( mosltly at sides of eyes area), which feel a little hot & mildly itchy (not there all time, but comes & goes),...wierd, wierd, wierd!  like so many other symptoms associated with this disease! Minter, hoping you have some success/relief with Moo Goo; overall, they seem to be great natural products; I've used the shampoo & conditioner for 6 yearz now (found nothing better for me); the 'Full Cream' body moisturiser & milk body wash are nice too& besides face cream etc there is also a sunscreen. Obviously there's no 'single approach' to fix this, we can only try things to help relieve our symptoms, it's never going to be a 'one size fits all' ......Ohhh, but I wish someone, somewhere, would discover that 'magic silver bullet' cure, sooner rather than later! 

Comment by Plf on March 3, 2019 at 1:51am

Hola all, a product I have found really good for irritation, itchiness and also has calendula which is fantastic for healing is Hope's relief ( available at chemist warehouse in Australia) but also on line, so soothing, full of lots of goodies, I buy the cream.  I continue to read all your posts and am glad we have such a wonderful support network.

Take care, 

Comment by Jules Australia on March 2, 2019 at 9:46pm

Oh boy, so many of us with LPP/FFA seem to have familiar experiences not only with the typical hair & scalp symptons but also the itching, red blotchy, changing skin issues; and the DRY EYES, which I always had a 'gut feeling' belief had a connection to lpp/ffa, ever since I first had the burning, creepy-crawly, tingling, itchy scalp (along with hairloss) feelings which hit me 'out of the blue' about 6 &half years ago. If you go through some of the earlier posts (or simply type in search box 'dry eyes' & or 'skin issues'), there have been may comments complaining of red, sore, dry eyes, blepharitis etc. Recently I found in my searches some interesting literature, a research study that confirms DRY EYE connection to patients with LPP:-  1. www.reviewofoptometry.com/article/scalp-disease-patients-at-risk-fo...  ("Ocular Surface findings in skin disease to a common etiology for both") published Aug 13, 2018  The article talks specifically about patients with LPP   2. donovanmedical.com ("Lichen Planopilaris & the Eye") under 'blogs & articles'- Scarring Alopecia May 17, 2018 (pub med article29757849). In relation to the same study, Dr Donovan talks of dry eye and MGD (Meibomian Gland Dysfunction), meibomian glands are the oil glands of the eyelid/eyelashes. Other studies have investigated occular findings in several skin diseases with immune dysfunction ie rosacea, psoriasis, alopecia areata; so I,think it's MORE than likely these other skin issues as well as the dry eyes have a connection to lpp/ffa. "Meibomian glands are part of the skins sebaceous gland network & are thus responsive to the same inflammatory reactions at work in hair loss".  

Comment by Minter on March 2, 2019 at 7:59am

Not that I am happy that this is happening to you as well- but I am glad I am not alone!  

My hands and forearms will get so unbearably itchy that I will literally draw blood from scratching at times- it sounds weird but when it flares up it feels like something is biting crawling underneath the skin, like it is on fire inside my skin.  It is THE MOST Horrific feeling that I can describe.  

It has been happening for about 6 years now and I have tried to explain to doctors and they pat my head and prescribe steroid creams and off I go.  

So I have to take care of myself now. I have to avoid any sort of perfumed or heavy lotions on my arms/hands and use sensitive sunblock- if in a pinch if I have to use regular or any of the above I have to wash it off as soon as I can- oh yes I have to be careful with soaps that I use too and for some reason if I happen to get my cuffs wet/damp that irritates the skin as well. But I can use the pretty lotions and perfumes etc everywhere else, just not on my forearms/hands.  Weird.  

Coconut oil, almond oil, pretty much any of the "oils" are very soothing and when it flares up I now use a CBD salve and that tames it down fairly quick. Also I keep Gold Bond Excema hand cream in my purse for when I am out and about, that works pretty well too. I did try a spritz or two of  the nasal spray when it was mentioned here a few weeks ago and funny enough that helps to calm it down as well. I also will put my arms under cold water when it flares up.  

I feel really bad that this is happening to you Kandy15 and I hope it is not as bad as it is for me.  It is a horrible thing to deal with.  

Oh and I have dry eyes and not great skin on my face as well as the awful 'white band'.   illustr8r, I'm 54 too and  this roller coaster is not fun anymore, I want to just be normal again too :-(  

Comment by illustr8r on March 1, 2019 at 3:11pm

Skin: I have lumpy pitted skin around my mouth and lower jaw area. I hate it as I have always had nice smooth skin. Before this mess struck I would get compliments on my hair and complexion with people not believing how old I was. I feel I do look my age now (54, when people thought I was in my 30's) or older. It sucks. I now get red blotches about a 1/4 inch to a have inch that pop up, flake over, that then turn brown.

Eyes: Yep, weird dry eyes. Used to contribute that to wearing contacts and sitting in front of a computer too long. I now take vitamin called EZ Tears by Eye Promise and it has helped considerably.

Itch: Yep, itched for years! Double whammy that this stuff plus lower kidney function has one of the side effects as itching. I use CeraVe cream and if it gets too bad I squirt some Clobetasol into it. I have two jars-one with and one without.

Self esteem: It's taken a hit big time. Don't feel like going out and feel that people will be always looking at my pixie cut with my big ears sticking out. I am envious of women my age with their eyebrows and ability to change up their hairstyle and color. I get tired of trying to be positive some days and where I used to not compare myself to others- I do now. It's just a weird emotional and physical rollercoaster that I wish I wasn't on. :(

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