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Another FFA Diagnosis
Hi All,
I have just been diagnosed with FFA, so here I am- I am 52 years old, well into menopause and it is almost like I just woke up one day, to 2.5 cm less hairline (measured by the dermo) no hair on arms & legs and thin eyebrows- when did all this happen and how could I have not noticed it happening!
Anyway, after a biopsy/bloodwork I am officially diagnosed with Lichen Planopilaris/FFA and got steroid injections along my hairline (ugh fun, not) have been prescribed the antibiotic Minocycline & Clobetasol ointment for my scalp- which by the way, is there an easier way to apply this ointment? It is an oil/serum, but I feel like I am wasting so much trying to apply it and it is not cheap! Then I am to go back in 4 weeks for a followup, she said she will probably put me on ( I can't remember the name of it) an anti-malarial drug.
In the meantime, I am going to go to an acupuncturist, I have been to her before, last summer, when I had very itchy forearms, I had been to a different dermatologist about it, who was very dismissive about it and prescribed a steroid ointment and sent me on my way. That is why I turned to the acupuncture/chinese medicine which helped a lot, so much so that I didn't need to return until now. Though, apparently, now that I think on it, the itchiness was the prelude to all this happening. Last year I started to become super sensitive to moisturizers/lotions/soaps/sunscreen- I had to begin using all natural/sensitive products, because otherwise my skin on my forearms, only, for some reason, would be so itchy that I would actually draw blood at times from scratching! Well now my itchy forearms are back, along with an itchy/sensitive hairline, and especially at the crown, I touch my hair and it feels like I am yanking it out, when all I am doing is literally just running my hands through it.
So I have decided to go back to the acupuncturist, she is going to start with a treatment of acupuncture/diet for me to help treat all of this. If nothing else, at least I won't have the itchiness/sensitivity to deal with along with losing my hair!! I spoke to my dermatologist and she is happy for me to combine eastern medicine along with the traditional treatment, just to keep her in the loop in case of any possible interactions.
So this is about all I can do for now, I am really happy to have found this forum! Though, I have to admit, it is hard not to be angry & frustrated, especially frustrated about FFA. I mean we have enough to deal with during menopause, hot flashes, nausea, weight gain, moodiness, etc.. and now to top it all off, losing our hair, seriously, enough already!!
Replies to This Discussion
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Permalink Reply by Minter on
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Bless you all dear girlfriends! Though we are miles and continents apart, I feel I have soul sisters in this forum. No one understands what I'm going through like each of you and I'm grateful and blessed to have found you.
I feel the same!
I am starting think along the same lines about the steroids CurlyK - Even though I have only been doing the antibiotics/steroid solution for a couple of days, I am starting to wonder too, is this worth it.
Will I have to be taking this stuff for years and years? I am already not thrilled with the side effects of Minocycline, I've now got the dizziness/sleepiness side effect and hoping not to get the side effect of possible joint pain/skin/teeth discoloration!
Also putting this Clobetasol on my head every night, it has only been 3 nights, but ugh, it is a hassle, it is making my hair a mess and when I wash my hair, I squeeze my eyes shut as all the steroids are now running down into my face! Probably not a good thing :-/
Ok, there we go, daily rant over.
PS, I will report back after today's visit with the acupuncturist :-)
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Oh dear! I know those feelings so well - avoiding events because of the awareness that family, who have known you for ever, might say something. And I know, absolutely, the issues of the sweating. A year ago, I ran an event at our local school - a Business Week, with lots of community volunteers coming into school to give Year 10s (14/15 year olds) an introduction into the world of work. I spent entire days trotting around the school campus, going from room to room. And the combination of the ever-present sweating on my head and the summer heat, was disastrous. I was SOOOO acutely aware of and embarassed by the river running down my face (not helped by the fact that my eyebrows have gone so the salty sweat goes straight into my eyes), and the ensuing stringy hair that just emphasised how much had gone.
And that was one of the real drivers to doing something concrete about this - the Intralace System. I just couldn't bear repeating that experience.
So this year, when I did Business Week again, I still had the sweating, but this time my 'hair' coped, so even when I was a sweaty-head, I just looked a bit damp, not a bald-headed ancient crone with damp strands across acres of palid scalp!
Might not be everyone's answer, but it sure helps. Majorly helps. And I truly believe that the less stress I feel, the less the FFA and everything that underpins it kicks in.
Of course, in deciding to have that done, I had to tell everyone about the condition. Told my partner first, then my sister and daughter. I cried. My daughter came with me to the consultation at Lucinda Ellory (even making an appointment at a hair loss clinc was a HUGE step for me to take) - and all of them have been nothing but supportive, seeing the FFA for what it is - a horrible condition that is simply bad luck. Now I talk about it openly if I want to, otherwise no one has a clue, I don't think, that the hair at the front of my head is not mine. Yeay!
I truly believe from my own experience that if you pluck up enough courage to talk to your friends and family, you WILL feel better and more in control. The self-imposed secrecy, for me, was deeply corrosive and made everything ten times worse. Maybe you are doing them a disservice by not trusting them with the information - and maybe they already know something has changed, but don't mention it for fear of upsetting you?
Easy to say (write), I know - not so easy to do. Believe me, I have been there!
So good thoughts and hugs to you to!
x
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Had the acupuncturist the other day, she suggests a paleo diet to calm/steady my immune system, I suggested that I know I wouldn't follow a paleo diet, because as fond as I am of meat/veg I am also fond of bread and cakes! So I will do some online searching and find a "modified paleo diet" that I will actually do, instead of the full on diet which would last about a day and a half :-/ I know that the last couple of months I have not been eating very healthily at all, so this may well be the kick in the butt I need to get back on track with good for me foods again.
She also has me taking a cinnamon based chinese herb tincture to calm the itching, she gave it to me last summer and it worked well for me and of course all the needles! All in all I am pleased that I went, this week has given me a lot to mull over, as far as my diet, supplements, medicines, etc. But since I am paying out of pocket for the acupuncturist visit, a lot out of pocket- this will not be a weekly thing!
Bu US Illinois, I read your post and it makes me feel sad for what you are going through. I think DeniseC has said it perfectly, by "coming out" you are in control of this FFA instead of it controlling you. Once it is done, it is a relief, it is out there and that is that, if someone has a problem with it, that is their problem, not yours!
Good thoughts sent to you from me also :-) !!
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One thing that is so very difficult for me is to accept how many people are on the same journey, and yet how little is known/heard about FFA. I have been on this site for a while now, and see a combination of the same comments over and over - the nightmare of being diagnosed/not being diagnosed, the destruction of self-confidence, the anxiety, the bewilderment .... I could go on - and new symptoms we seem to have in common.
For me, the oral lichen planus, terrible (and undiagnosable) problems with my gut, sweating, undiagnosable red, peeling rash on my forehead (like a lupus rash) long before the FFA, and itchy arms and legs had never been linked in my head (or anywhere else that I knew of) before I went on this site. Now I believe they are all linked.
So what else is linked? What other things have I experienced healthwise in my life - trivial or other - and not made the link with FFA?
But then I do believe that FFA is itself a symptom, not the underlying cause. Question is, what is?
Denise
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You willget there, honest! I can tell by your tone - you might be feeling rubbish about it all, but you still come across as fundamentally strong and have a sense of humour.
Both of those get you a long way.
So keep strong! And if you are feeling down, offload here - it certainly helps!!!
x
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Thank you all! I also very much appreciate everyone's input. So I know a symptom is the red follicles at the hairline, slick skin at the hairline and a jagged hairline as hair recedes. I get that and I see that personally. But does anyone notice a thinning further back? Is it a sign that I might be losing a larger swath of hair up front in the future?? I notice that between 1.5-2 inches from the hairline has thinned. :((
This freaks me out. Just wondering if it's related or ??
My hairdresser seems to keep cutting my bangs further and further back as it thins....
I hope to keep this hair....
I'm thinking positive.... -
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You have good attitude, BU, you are on here and talking about it and you will get to that place! Like DeniseC says, offload here, we are all here for each other :-)
To be honest, for me, coming on here and joining this group, that was a HUGE step- I mean this can be read by anyone in the world, so by signing up, I feel that I now have lightened my burden, if that make sense? In turn, making it easier to say, if it needs to be said, yes, I have an autoimmune disease, which is causing a form of alopecia that is making me lose my hair and it will never come back.
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Permalink Reply by KarenGinny - Iowa, US on
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Hi, I just wanted to add to this conversation and ask if any of you have problems with your thyroid? I'm 51, not yet into menopause and have been fighting this LLP/FFA for about 4-5 years now. I've been to two different dermatologists, had the steroid shots which didn't help, clobetasol - didn't do much, and now have been on methotrexate for about a year. My hair loss seems to have stopped, but I've lost quite a bit- sideburns, temples, forehead back an inch, sides at least 2 inches. My eyebrows have thinned but they are still there, and I still have arm and leg hair. About 10 years ago I had a nodule on one side of my thyroid gland and it was removed with half of the gland. I've been on thyroid meds since then and didn't notice any problems until about 5 years ago with bit of hair loss here and there. It just crept up on me and has been where it is for about the past 3 years. I cope mostly by wearing long bangs to try to hide my big forehead, but they are thin and all the hairspray in the world won't keep it from blowing around. I sometimes wear headbands across my forehead with my hair draped over, kind of a hippie look but I have a pretty casual lifestyle, so it works for me. Or the headband with the rest pulled back into a ponytail - more of a sporty look. I also wear a baseball cap outside, but then I sweat and my hair underneath is a mess. I also have the sweaty head problem, I always seem to sweat more than anyone else I know!
It;s so great to be able to share this with people who understand. My husband is great and my other family knows but don't really talk about it. I haven't really shared with other friends or casual friends, so I'm not sure what they think. I'm just the gal who wears headbands all the time. :)
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Permalink Reply by CurlyK on
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I'm getting all the tests next month for every autoimmune disease out there and to see if my thyroid is involved. I'll post back once I have results.
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I actually had an enlarged thyroid and part of it removed about 20 years ago, but other then that, my thyroid has always been fine.
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