Posted , 19 users are following.
I have recently been diagnosed with both - the LS first. But that could be because the FFA takes a while before one notices it is happening. I would be really interested to know if there is a link between these two auto immune deceases. I am struggling a bit as they are both quite depressing conditions.
2 likes, 34 replies
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all_the_kings_horses annabel01635
Posted
What is FFA exactly? Is it another auto immune disease? What are the symptoms?
As if LS isn't enough! I have just been to see my dermatologist, who is trying a new method of clearing things by putting me on antibiotics for 3 months!! It was a relief in fact, as I was sure she was going to do another biopsy, which I was dreading. Take care and keep in touch.
annabel01635 all_the_kings_horses
Posted
Frontal Fibrosing Alopecia is an auto immune desease which attacks the hair follicles in a band around your hairline and temples. It can retreat back off one's forehead about 5 or 6 inches! I have lost about an inch, maybe more at the sides. It starts really slowly so it took a while before I realised something was wrong. It never grows back so all we can do is try to keep what's still there! I have just started taking Plaquenil. My dermatologist said I should take it for a year. She says it seems to help some people - although it does have some nasty side effects if you are unlucky! We'll see... I would like to know how the antibiotics work. They do sometimes bring on thrush (I've just had the thrush - not the anti biotics ) It cleared quickly with canestan cream and for the moment all is well with the LS. But the hair loss is very damaging to self esteem to put it mildly.
all_the_kings_horses annabel01635
Posted
It sounds horrible for you. I have been persuaded to take up juicing, as apparentlty it gets rid of all the toxins in your body and also is known to clear up many health problems. I rushed out and bought a juice machine and am mixing vegetables together with one or two fruits to make it sweet!! Only trouble is I am up all night running to the loo, after all the liquid. I do believe it can do some good and I need to lose some weight, so this is a pleasant way of doing it! My LS is very sore at present, so I am hoping that this will do the trick. I never know if I have thrush, just carry on treating the LS and hoping one day it will go away. For the moment the soreness is worse than the itch!
Good luck with your treatment and let me know how you get on.
Horses
annabel01635 all_the_kings_horses
Posted
I thought I was having a really bad episode of LS and so was quite surprised when my dermatologist took one look an said it was thrush at present, not LS. All the discomfort disappeared after two days of applying Canestan cream. It doesn't do any harm so might be worth a shot.
As for the Plaquenil for my hair, which is actually an anti-malarial drug, its going to take months and months of taking it before I know whether its doing any good or not. Why did you have to have a biopsy?
Jeepers annabel01635
Posted
What really interests me is the three month antibiotics treatment you are having and I am very interested to know the outcome, so I hope you will keep using this forum to let us know
I only know of two women who were cured of LS, one from using estrogen and testosterone and the other from a long course of antibiotics. the latter llady had guessed she picked it up from virus carried into her from insect bites in the country in Africa, ( as numerous women in the area where she was had LS) so maybe it would not have worked for everybody..
She was prescribed pro-biotics at the same time, was advised if it re-activated in the future could be treated same way again.
all_the_kings_horses annabel01635
Posted
In answer to your question, my dermatologist was going to take a biopsy, because she thought I might have cancer. However, in the meantime she had taken a swab, which was clear. As the LS is still really bad, she decided to try antibiotics for three months, as this has been successful with another of her patients. They do not go well with statins, so have had to stop taking the latter for the duration! I'll keep you informed......
Jeepers all_the_kings_horses
Posted
annabel01635 Jeepers
Posted
It sounds like it is possible you have Frontal Fibrosing Alopecia. I am interested - do you think they could be connected as LS is also autoimmune? Also, I am wondering about the people you mention getting cured from LS... I find it hard to understand how something which has become fused through being damaged (i.e. and healed by creating scar tissue) can become unfused. But perhaps you are talking about the pain/outbreaks but without the unfusing. On another point, I am 54 and feel both FFB and LS started when my estrogen started to run out! I also had a period of difficulty/grief when my Dad dies two years ago. In some ways I'd like to just be able to accept these conditions but something keeps driving me on to try and find out more about them. On the hair I think I have already wasted some valuable time.
Jeepers annabel01635
Posted
Re fusing, apparently everything we had is still there and yes, some ladies have achieved unfusing even if only partial, usually through the use of hormone creams.
Your suspicions about a connection with a hormone drop and LS is shared by me. I got LP for 2 years, swiftly followed by LS right after ceasing taking HRT.
There again, some girls find their LS goes away when they reach puberty, the reverse. Also some women noticed it started after pregnancy, so I do wonder if it is change imbalance of hormones rather than the estrogen itself.
some say its hereditary, some from insect bites, ticks etc. Maybe they are all right and it is a multi-triggered disease .One excellent LS/LP site has been trying to get somebody in power to start some proper research.
lichensclerosis@yahoogroups.com
wendybird annabel01635
Posted
I have both. diagnosed with LS around 10 years ago (aged 43) and now manage to keep that under control with Dermovate. I noticed hair loss about five years ago - firstly thinning on arms,underarmss, legs, one eyebrow and moth eaten ladyparts... wasn't that bothered by any of that but then noticed receding hair line. Could not get GP to take me seriously being fobbed off with 'it's the menopause - you'll just have to put up with it'. Finally diagnosed myself through websearch and then went privately to see a trichologist who confirmed what I thought and who fully understood how upsetting it can be. GP was not impressed to receive letter from trichologist and was actually looking at the same webpage as I had used to diagnose myself when I walked into her office - she reluctantly referred me to dermatologist who confirmed the diagnosis (I have needless to say since changed GPs). Now applying Betnovate and have been taking anti-malarials for a couple of months, they are beginning to make me feel a bit liverish and off colour but I shall persevere until I see the dermatologist at the end of the month. If you do take them you have to have regular blood and eye tests but it seemed a better option to start with than taking steroids. According to the literature there is no link between both conditions and no clear cause established. I think FFA is related to lichen planus or lichen planipolarus and it is an auto-immune thing. My advice to anyone is if you notice you are receding pursue it - do not be fobbed off. I have lost more hair than I need (gone back about 2.5 inches on forhead and an inch down the sides of my face. If I could have got someone to listen and act when I first noticed it was going it might not have gone so far. No-one cares about the damage this does to your self-esteem, how unfeminine it makes you feel or how upsetting it is to not know whether it will stop! As it is I can just about cover it up because I generally have a good head of curly hair and can ringlet it over my forehad, but it makes me feel sad some days all the same... I am hanging on in there with the treatment to see if I can stop it going back further. Once in remission for over 18 months you can pay for a hair transplant apparently!
annabel01635 wendybird
Posted
I can't tell you how weirdly better it feels to know one is not alone struggling with the same issues. I know exactly how you feel with the hair loss. I have lost a similar amount. My hairline has receded nearly two inches I would say with the temples completely gone. I certainly could not wear my hair up or in a ponytail without looking very odd. Even my husband says its just vanity to worry about it. Part of the worry is not knowing how far it is going to go. I had not heard about remission followed by a transplant. Would it look normal do you think? I now dread a windy day. Between that and my shrinking vulva..... Its hard to feel great about oneself. I understand that with the FFA it is a matter of catching it and trying to prevent further hairloss. But at the same time my dermatologist says it just seems to burn itself out after a few years. I have been treating it for about 9 months with dermovate liquid applied around the hairline at night and now am on the Plaquenil (anti-malaria) and have been for about two weeks. Its such a slow moving thing it is hard to know whether it has stopped getting worse. As for the LS, shrinkage is the main problem. It has never been diagnosed by biopsy but one gyne and one dermatologist have both confirmed on sight that it is LS. I just don't remember getting any symptoms except for thrushlike ones. And yet the fusing seems to be happening. Will the LS just burn itself out one day I wonder...Anyway, if nothing else it is good to unload in this forum with its comfoting anonymity!
linda39656 annabel01635
Posted
I know this is overwhelming - stay positive.
annabel01635 linda39656
Posted
I would be very interested what your doctor says about whether there's a connection or not. Is LS known about generally in California? Here in England I have never heard of anyone having LS (or FFA for that matter) or know anyone who has it and I have to admit, I have never brought it up with anyone. (I hate the idea of people I know googling LS and coming up with all those revolting deformed vulvas on the internet!) I guess one day I should tell my daughter as I have a feeling it might be hereditary.Have you heard this? Also, on the FFA, although I didn't start to worry until eyebrows and temples started to disappear, it is true that my underarm hair and most of my leg hair has also gone (less of a tragedy!) Will try to stay positive!
linda39656 annabel01635
Posted
My bioposy results are positive for FFA...so the Dr. is prescribing an oral medication in addition to an anti-inflamatory oil that is applied along the hairline daily. I will ask her on Tuesday if research shows a connection of FFA to LS. I was diagnosed with a very mild case of LS but I had already exhibited signs of FFA. In fact, from what we can determine my signs of FFA started a few years into post-menopausal. I had assumed that the loss of leg hair, arms, underarms was part of menopause - turns out thining of hair is part of it but not Total loss of hair. I have not shaved my legs in over 5 years!
Since FFA came on the medical scene in the 1990's there is little research and it is not as commonly known by dermatologists. Yes, they have heard of it but it's not something that they are acutely familair with - which is why my original dermatologist sent me to a university research center. The dermatologist there walked in, examined me and immediately knew the cause and history. Finally, someone with knowledge.
Our goal is to stop any further progress of the receding hairline/sides of hair. The eyebrows are basically a lost cause but that's okay - I'm very good at doing my eyebrows. I have a super strong forward hairgrowth so my forhead is seldom seen - which works well for me at this time.
I will be picking up my medication tomorrow -
FFA and LS are both autoimmune disorders with a high percentage of post-menopausal women being diagnosed with FFA. In fact, my doctor said there has been a significant increase. I think it's more than women are talking about. I would never had said anything to my doctor if the eyebrows/hairline had not become an issue. I was cheering menopause when I thought it was the cause of not having to shave legs, underarms or have any hair on the upper lips (peach fuzz).
Stay positive....
annabel01635 linda39656
Posted
All very interesting. Thank you for that. I have a dermatologist whose interest is in women's health and she recognised my FFA. I am on anti-malaria tablets for a year. Apparently there can be side effects but I don't seem to experience any so am plugging on with them. I spent a fortune about 18 months ago going to the top London trichologist and learned nothing new - apart from leaving with armfuls of expensive shampoos and some scalp medication which probably does no harm but am not convinced it helps. I t hink the university research centre is a good bet. At least you know they will be up to date with current thinking on FFA. I have also lost most of my leg hair (not a tragedy) and underarm hair. I have been considering tattooing for my eyebrows? I wonder if anyone has tried that. I even wear brow liner in bed!