When I was diagnosed in March of last year, almost a year ago, My derm said there were some drugs I could try but he didn't recommend them because of the side effects. He didn't tell me about any other treatments either and I haven't done anything except using clobetasol liquid when my scalp is itchy and using T-gel shampoo and a good conditioner. He had been giving me steroid injections along my hairline Before most of my hair there fell out - so that didn't appear to do any good. So I've just been getting along without any other treatment. I keep wondering if I should get a 2nd opinion from a different derm. I know I have FFA, and I don't know if it's worth the expense. My insurance did not cover alopecia as a diagnosis so I had to pay for it myself. I think my hair would have fallen out no matter what, and most of it was gone by the time he did the biopsy to confirm it. The rest of my hair is still growing like normal and I get regular haircuts and color it at the roots, since I don't want to half bald and grey! I'm hoping it will just stop at some point and it has looked about the same for a while. I've pretty much come to accept it.

I have not gotten any wigs or hairpieces. The idea of wearing one sounds so uncomfortable that I will probably try to wait until I absolutely need one. My hair has thinned somewhat all over with one thin patch in the back, and mostly bare along the hairline, but I style it with long bangs - fringe, in the front and try to cover it that way. and lots of hair spray! I just hate when I'm outside and the wind blows it all over and so I keep a couple hats in my car and at home if I need one. I used to do a group exercise class at my local YMCA, but haven't gone in a while since I don't want my hair flying all around for everyone to see. I'd rather just walk on a treadmill or outside with a hat on or exercise at home. I really hate that I have this thing I feel I have to hide. And I don't want to be mistaken for a cancer patient. :( I've really only told close family members and they seem to think it's no big deal, but they don't really know how it feels. They are all saying "it's just hair!" but if it was them, they would see it differently! and as for acquaintences I have no idea what they think, just that I'm having a really bad hair day! At least all of you here understand and I am thankful to have found this group.

It's true, Rebecca, it is only hair, but that's huge. My friend told me yesterday that of several cancer patients she has known, one of the biggest deals for them was the loss of hair. She gets me. Unlike many of you, I've told just about everyone I know (and am fairly close to) about what's going on. It's just always been my way of coping. I figure it I put it out there, then a) everyone knows why I'm crazy sometimes and b) maybe I'll learn something along the way. Thinking about how lucky I am not to be losing my breasts, when so many more women have that experience, does put it in perspective, but it's okay for us to have bad days feeling sad, angry, despondent about what is happening. It's happening to us. I've had a serious cancer scare in my life - melanoma at the age of 40 - and I'm lucky to be alive, but this is STILL freaking me out. I so appreciate everyone here sharing her story. We don't know why this is happening to us, but I do know it's not our fault. I strongly suspect it's a combination of hormonal imbalance and autoimmunity. Rebecca, when I was first diagnosed, my husband started mentioning what it was like when he lost his hair. I calmly told him to never speak of this again in the context of my hair loss. The second time he brought it up, I got pretty pissed off. The third time, all hell broke loose (in a car!) and I think he finally got the message:)! He's actually an amazingly supportive man and will love me no matter what - I count my blessings every day - and it sounds like you have a supportive husband. We're lucky. I hope you all have someone who can support you through this - a husband, a partner, a family member or a friend. Have a good weekend, everyone.

Hi Suzanne I think you are right non of us knows, doctors included!I must admit now I know its not all going to fall out over night I have come to a point of acceptance. I'm unhappy its happening, but at the moment its not ever so noticable, unless its windy, and then I wear a hat. I fiddle with it alot when I'm at the gym because when I sweat alot my fringe is so thin it sticks to my face, which isn't attractive! So at the moment I'm ok and if it gets alot worse then I will have to deal with it when it happens but I'm not going to worry because it might not get alot worse! ( I say with my fingers crossed!!)
It is so good having this web site!x

Sorry I've just realised I have commented to yesterdays news not todays! Anybody else suffering from a lack of brain!!!X

Like you Susanne, most of my friends know about my FFA. My husband is very supportive. Even though he was going bald at age 30, when I married him, it never seemed to bother him at all.

Ellen, what is the medication used for FM that they are trying for FFA? I've had FM for years but don't take any meds, just getting by w/ lots of rest, yoga and a Jacuzzi tub.

Here's my thought for the day:
I don't have bad hair days.
Every day I still have hair is a good day.

Sorry- I feel bad not being diagnosed but its so frustrating just being fobbed off and then having to wait for appointments to come through whilst your hair and scalp is constantly changing. I feel like Im having a bad week. My scalp was so sore on Tuesday I couldnt put a hood up. Its better now but still has a very sore spot, my husband says it looks like a raised lump redder than the rest of my scalp. I can't really see it.

My question to those diagnosed with LLP or FFA what are your symptoms? Do you get visible sores? My latest one is 1cm into my hairline, My loss initally started after a sore about 18 months ago in the temple area and although my hair has thinned since I've not been overly aware of anymore spots.

I currently am prescribed bettamousse and betnovate scalp but planning a docs appointment to ask for more help maybe clobetasol instead.

Jules - That's interesting about the melanoma. They got mine just in time so I didn't have to have anything beyond a wide excision and sentinal node biopsy, which was negative, thank goodness. It's another thing that takes you for a wild ride in your head, isn't it? I'm going to tell my onc about this the next time I see him. He does research with Melanoma, as does my dermatologist. I'm guessing our immune system is somehow to blame for it all. I teach at university and am also concerned about being in front of people. The whole scarf look doesn't really suite my style. Maybe I'll become more of a hippie, then I can wear the scarf. Nah. Probably just a wig. Alice, I'm so glad your husband is supportive.
Stacy, I have had visible little sores but none since I got off gluten. Still the past few days I've had itching and some sore spots. It seems to gear up a bit right before my period. Yes - I am still getting that, but I can't imagine that's going to go on much longer. So I think hormones are at play as well. I think FFA is just used as a catch-all to describe the fact that the hairline is receding. They do biopsies, but there is no result which says "this is FFA". It's purely a description of what's happening.

Thanks Susanne, I've noticed increased activity during my period, yes I'm only 34 but was wondering in this coincide with early menopause. I havent lost much yet just alot of thinning on both sides and around the hairline. Have you given up Gluten altogether? I have started to drastically reduce my intake of gluten but think it would be hard to totally block it out. I also had a breast cancer scare last year which needed a biopsy- again I believe this is probably again down to hormone imbalance.

Hi Ladies,

Following the recent comments today-- my issues started in my late thrities and DEFINITELY are triggered by hormonal influences. My most recent inflammation event last week was associated with onset of my period and a good dose of simultaneous external job stress.

I am not being treated yet for my FFA and am considering whether I want to do so, even though I am desperately unhappy with the idea of further balding or wearing a wig-- which are clearly the two possible inevitabilities for me.

Looking for the lesser of evils--I am wondering-- has anyone tried using synthetic birth control hormones (pill, shots, etc) to both level their hormones and actually suppress their periods as a way of slowing the hair loss? If there was a shot in the dark for that to work, I think I would be more open to that than the other treatments.
I got taken synthetic hormones almost two decades ago. Is anyone actually on any syntehtic hormones and still experiencing this problem?

Thanks,

Aimee

Clarification (I need spell check!)-- I've not taken synthetic hormones for nearly two decades...

Stacy - I have totally given up gluten. Honestly, I just don't think it's that hard, although my husband does make the best bread and pizza in town. I like to cook, so that makes it a bit easier for me. I've had enough benefits from doing so over the past month that even if it doesn't stop this FFA thing, I'm going to continue with it. It feels like I've been put on an anti-depressant. I'm still upset by it, but haven't been very depressed or sobby about it. It seemed to really be helping - my derm noticed the difference - but then the past few days I've had a bit of a flare-up.

Pam, I also had a scalp biopsy that was + for LLP, but dx'd w/ FFA due to the pattern of hair loss.
I'm wondering what other hair loss others have noticed. A few years before I started losing hair on my brows & hairline, I had trouble w/ eyelashes falling out. An eye doc suggested using hot compresses over my eyes to unclog the follicles. I still have trouble w/ lashes falling out easily, but they grow back. My eyes are also very dry.
I've also lost all of the hair under my arms and most of the hair on my legs, which I am not sorry about. The hair on my forearms is much thinner. In fact the only place I don't seem to have lost any hair is where it doesn't show unless I am stark naked, if you know what I mean.
What other hair loss have you noticed besides brows & hairline?
Alice

I've lost hair on my legs, arms, eyebrows and hair line. I have noticed my eyes are dryer and don't water as much as they used too. My head doesn't itch its tender if i tap it by mistake with a hair brush.
I started my menopause when I was 43 and I'm not on HRT and that was the first thing I asked my derm but he said it wouldn't have made a difference, if I was on it or not!

My hairloss started whilst I was on an implant for birth control, i had that removed and was put on the pill- just a normal one probably not one of those recommended for hair loss. over the last two months whilst on the pill I have had whats felt like flare ups, more sensitive scalp, hair prone to breakage etc. I then came off the pill but this was only a few weeks ago and my flare ups are still there. Its very frustrating I have an appointment in 6 weeks so hopefully I will get a diagonsis then.

For those visiting Salford, If the travelodge you mention is near Old Trafford, there is also a Premier Inn there which has free parking. I was there a few weeks ago for something else and the Premier Inn rooms were really nice. Its on the other side of the water to the Hospital but looking at Google Maps it should be quite accessible. I dont have my appointment til April and only live 2 hrs away so wont need to stay over but this might help someone. PS it was easy to get to the trafford centre too for shopping!

My opthalmologist said she had seen only 1 case of retinal problems resulting from to plaquenil. It was a 80+ year old woman who had been taking it for over 20 years and it reversed itself once she stopped taking the drug. She also told me that a lower dose is being used now than in the past, so the danger is lessened. I tried it for a while, went off when I didn't think it was helping but am thinking about going back on it for the long haul. My internist also told me that it was generally well-tolerated. As long as you get regular eye exams, I think it is safe. But I would recommend getting a baseline exam before starting it, just to be on the safe side.

Rebecca - I know this can all be so overwhelming. I struggled with the decision as well. I did not have an eye exam before starting it, but was told to be sure to have my eyes checked every six months from here on out. I did have a liver function test before starting and my derm took one again when I had been on it two months. It is interesting to see what different doctors recommend. My doctor did say that it is quite safe for the most part. Almost all drugs have some sort of side effect, but as far as plaquenil goes, the extreme side effects are very rare, from what I understand.

Hi Rebecca. I was prescribed Plaquenil and I wont take it. The eye hospital said that they would keep an eye on my eyesight if i do choose to take it but I am very short sighted and to be honest I would rather be bald than have any further eye problems. I have been told by my optician that any problems are not reversible and that the drug can interfere with colour vision which is another thing I would rather not risk.
x

Hi Simone. I was prescribed Doxycycline and Steriods. The Doxycycline was the alternative to the plaquenil. The steriods were prescribed for 8 weeks for a boost. However I have now decided that I am not going to take anything further until I have spoken to another doctor. I was a nurse for many years and I always err on the side of caution when it comes to medication. When it comes to my eyes I prefer to take the advice of the eye hospital and not of a dermatologist.
x

Hi everyone. I'm new to the group and have been following this discussion with interest. I'm seeing a dermatologist in a couple of weeks after a gap of two years during which I've been using Dermovate. Last time I saw a consultant dermatologist he suggested I take a course of Cyclosporin but when I read about possible side effects I decided against it. I wonder if this new dermatologist might suggest I might take plaquenil?

Hi Rebecca,
I have been on Plaquenil almost 2yrs with no side affects that I can detect. My specialist made sure I had an eye test that included checking the retina before going on it. At first she said I needed to have the test every year, but last appointment she told me once every 2 yrs now seems to be the requirement as research has shown there only appears to be a chance of getting retina damage over long term use. It would be wise to make sure you don't already have any retina issues before commencing the medication I would think. I am happy at this stage using Plaquenil as I do believe it might be slowing the process for me - I don't believe that or anything at this stage will stop the process though, which appears to be the consensus in our discussions. Ultimately you need to be happy with taking any type of medication yourself. It's good that you can get feedback from others who have the experience.

Ellen, Thanks for the info about the FM med you are using for itching. I tried it orally years ago, when they were prescribing it for just about everything but all it did was make me feel spacey. I didn't realize it came in a topical form. I'm glad the tea tree oil is helping. I've been using it along w/ TTO conditioner but now my hair seems very dry. I'm wondering what I can use for the dryness that won't further irritate my scalp. If it's not one thing, it's another.

Hi Has anyone tried Nizoral Shampoo and how did you get on? I have shed loads in the last few weeks and the main difference that would cause any effect would be the nizoral. I have read about possible shedding when you start but wonder if I should just stop it. I have also found out that the pill I was on and the implant before that were andronic so I have changed to a less androngic one in the hope that the loss slows down. My hair line is going rapidly now

Hi Celia, yes I am jetting up to Salford tomorrow... I will ask about gluten/diet and see if Dr Harries has an opinion on that. I suspect that most medical doctors tend to not look at the whole person and taking a holistic approach where you examine effects of diet, stress etc is not really taught during their training. I will of course ask the question. I know I will be offered the same meds that you have Celia, which is OK because at the moment I only have the steroid lotion Dermovate to use and I have not been applying it because I don't thank goodness experience any itching or redness with my FFA... Stacey, I do use Nizoral once a week, I have not found any problems with it, I use other regular shampoos too, I feel that because I wear wigs to work now I want to make sure I keep my scalp extra clean for hygiene reasons and I feel that as Nizoral is a medicated shampoo it must give a more thorough clean - this is just my opinion. XXX

All the best to you tomorrow, Debs.

As the gluten-free guinea pig, I want to let you all know how it is at almost six weeks without gluten and without much replacement through other grains, but rather more meat and veg and healthy oils. (I'm eating a pumpkin "pancake" for breakfast as I type). I'm leaning a bit toward the paleo diet, but am not following strictly by any means. I've had a couple of days of itching and one small red patch, but it seems that the hair loss has slowed down somewhat. It certainly hasn't increased. To be honest, I'm not sure if this is going to stop it - I'm skeptical. BUT while I was super skeptical of this whole gluten-free business to start with, I can already tell you I'm not going back. My diet is a lot better, I've lost a bit of weight, my skin has cleared up, my mood is significantly better. It feels like I'm on some sort of low-dose anti-depressant. I haven't sobbed uncontrollably about this whole mess in weeks and weeks and it's not because I haven't felt distressed by it. It's the strangest thing. Since everyone says to watch out for other autoimmune diseases, I've decided that this just may keep me from getting on. I think the big problem with the whole gluten-free thing is that (at least here in the U.S.) it's such a diet fad at the moment and that makes a lot of people skeptical. By the way, the nutritionist/acupuncturist who is treating me studied conventional medicine in Germany before coming to the States and turning to alternative medicine.

Here is an M.D.'s take on the whole gluten "fad". http://www.huffingtonpost.com/david-katz-md/gluten-free-diet_b_9070...

Sure, Simone. Yes, eyebrows are affected. Hard to know how long I've had it, actually. I didn't notice it properly until I went to the derm to see about my eyebrows and that was in July. It was clear that I had had it for a bit. I've been taking Plaquenil for not quite three months.

Stacy, I am interested in your comment that the pill and implant you were using when you started losing your hair were androgenic. I noticed my hair loss a few months after I had a hysterectomy and began using a vaginal cream w/ testosterone in it. Not long after I switched to one w/ just estrogen, my hairdresser noticed new hair growing all over the top of my head. Unfortunately, I haven't had any regrowth at the sides, where it's the thinnest. or along the hairline. But I'll take what I can get. I tried Nizoral but found it to be a bit harsh, especially since my hair tends to be dry.

MY APPOINTMENT WITH DR HARRIES:

I gave him my letter from my own derm confirming I have FFA from a scalp biopsy. Dr Harries examined my scalp. He sent me for a blood test to check liver/kidney function before I start hydroxychloroquine sulphate, he will ring me in a week with results. I have got the drug. He gave me a prescription that I filled at the pharmacy at the hospital so I can start the drug immediately he gives me the all clear on my blood test. I went to the medical photographer and had my hairline photographed so he can see the progression of the FFA. Dr Harries said he will give me steriod injections in scalp next time - said he has seen evidence that can help. He can also give me the doxycline when I have started taking the hydroxychloroquine (you can take both together but he starts you on one to check for side effects because if he gives you both you can't tell which drug is effecting you). I had an eye test with a nurse.

I asked how far the FFA can progress. He said it can be between 1cm and 8cm. You can also lose hair from the back hairline (nape of neck). You can't tell for certain how much a person will lose but often people that lose hair slowly lose less than people that lose hair faster.

So, it is hydroxychloroquine, doxycline and steriod injections in scalp to start with. He said there are other drugs you can use to suppress the immune system, like Actos, however since Actos has now been banned in France for all uses it is something you need to really think about - I said I don't want to use that drug.

Dr Harries asked if I wanted to keep seeing him because of the distance involved (I flew up from London to Manchester) because he could recommend treatment and my doctor could prescribe, he did then add that he can't make my doctor prescribe a drug for me he is only recommneding... I don't want to take a chance of my GP not going along with Dr Harries recommendations so I will continue to fly to Manchester and be treated by him.

I asked about the gluten free diet. He said there is no evidence to say it helps FFA.

Any ladies in the UK I would strongly advise you ask your GP to refer you to Dr Harries. I know it is not convenient for most of us to travel to Salford but it is worth the trek. I flew to Manchester. The taxi was £28.00. I used a fixed fare taxi company that have a booth outside Terminal 1 Arrow Cars 0161 489 8899 and I got a taxi back from the hospital that was a fixed fare of £23.00. There is a free phone to a taxi company in the main reception opp the M&S shop.

I am so SO grateful to Celia for giving us all this info on Dr Harries and encouraging us to see him. This is the first doctor that has really understood this condition.