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Frontal Fibrosing Alopecia/scarring Alopecia

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Cailin deas View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Cailin deas Quote  Post ReplyReply Direct Link To This Post Posted: 25/February/2013 at 12:51pm
Hi All,
I am new to this site but I have being reading through the posts for the past 6months. My issues started in July when I noticed my left eyebrow had a patch missing in the centre.Visited my GP who said she was a bit confused as I still had my eyelashes! She then proceeded to look up an Internet site for causes - over plucking ,hormones ,menopause and "sometimes we just have to accept we are ageing !!" Which really upset me as we all age but I never heard of people who had Bald patches in their eyebrows through ageing.I had a blood test that came back clear I noticed my hair was generally thinning but particularly at the sides.I went back to GP and insisted she refer me to someone.so to cut a long story short I have seen a derm. Who saysI have LIchen Planopilaris ,FFA,Kossards syndrome. I have had blood and hormone tests and I'm waiting for scalp biopsies, at present I'm using nizoral shampoo & cream
And elocon cream on eyebrow area.the derm has said all the hair I have lost to date is gone for good and can never grow back again due to scarring.i accept this as I'm lucky , I had a lot of hair in the first place so my thinning/ patchy areas on the sides and back are hidden. What happens from here? When all the results are back and I see the derm again ,he gives me creams etc., what can I expect ? Will I lose much more of my hair ? does the creams slow down the scarring? I didn't lose all of my eyebrows so do I assume the elocon cream works and has stopped or slowed the hairloss on the eyebrows?
What are the important questions I should ask the derm on my next visit?
I am a 49 yr old mum of three very supportive teenagers and a wife to a husband who desperately wants to support me through come what may.But I am so frustrated and full of what ifs and need answers now !the waiting is the hardest part .
Many thanks CD
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te.rayz View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote te.rayz Quote  Post ReplyReply Direct Link To This Post Posted: 25/February/2013 at 1:18pm

Hi Seni

 

Thanks for update.  It was good to read you had a constructive consultation with Dr Harries – whilst trying to cope with this condition it helps enormously to have a good relationship with the consultant!  I’m sure your blood tests will be fine and you’ll soon start your medication.

Wishing you well !!!  and keep us posted.

By the way, will you start with 1 tablet per day . . . . ?

 

Hi there Autumn

Hope today’s appointment goes well for you too !! and you manage to get your questions answered – sounds like you’re well prepared!     Thumbs Up
 
Wishing you both well,  te.rayz   x
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Post Options Post Options   Thanks (0) Thanks(0)   Quote te.rayz Quote  Post ReplyReply Direct Link To This Post Posted: 25/February/2013 at 3:55pm

Hello CD    Handshake

 

Sorry to hear your experiences, I can understand your worry and upset.  The horrible truth is the patch or area affected by scarring alopecia will result in permanent hair loss.

 

The best advice I can give you is get biopsies done asap to establish which scarring alopecia you might have and thereafter get your consultant to start you on a treatment to prevent the spread of the condition – previous postings have already outlined some of these treatments.

 

I haven’t used Elocon cream however I have used other similar topical applications which to be honest are all much the same – they are topical corticosteroids which may help to relieve visual symptoms, i.e. dryness, itchy, flaky scalp but will not provide the cure.  They are to be used only short term and only on the affected area since many can be potent.

 

Sadly for us there is no cream out there which can slow down the scarring.  This type of alopecia is viewed as quite rare even in the bigger spectrum of non-scarring alopecia therefore little or no research has been done in this country.  In fact it seems the wider non-scarring alopecia group on this forum are equally fed up at being forgotten – see campaign to sign e-petition.

 

Once you’ve had your biopsies I feel sure your dermatologist will look at prescribing an oral medication (see recent post from Seni) as this appears to be the preferred option in trying to stem the spread of the scarring by stopping the underlying inflammation at the follicle root.  The destruction is caused deeper under the skin where hair follicle and sebaceous gland are located – once these have been destroyed it leaves permanent hair loss.

 

I do accept that a certain amount of hair thinning is to be expected as we age and sometimes if we’ve been fortunate to have thick hair in our younger years we tend to notice the thinning even more.  Age-related hair thinning is not alopecia, and it certainly is not the same as scarring alopecia – perhaps this is something you can discuss with your derm on your next visit.

 

Thankfully you have a supportive husband (and family) which is much needed when facing such conditions.  Naturally they will not understand everything about this complex condition but at least they can give you a hug.  I can relate to your frustrations, anguish and worry and the need to have questions answered but the best thing you can do is to read, be informed, get as much info as poss and maybe take a look at www.carfintl.org

 

Sending my best wishes,   te.rayz

 

P.S. I keep a bottle of Nizoral shampoo to use now and then however I only dab it on the affected area and never wash my entire scalp with it.  I’ve also used Etrivex shampoo in the past – again sparingly because it contains a potent corticosteroid.

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Cailin deas View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Cailin deas Quote  Post ReplyReply Direct Link To This Post Posted: 25/February/2013 at 6:23pm
Thank you for your reply. This site has really helped me to get this far,just reading other people's experiences and ways of coping have helped me to stay positive and be informed.much appreciated. Will look up sites , CD
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Seni View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Seni Quote  Post ReplyReply Direct Link To This Post Posted: 26/February/2013 at 11:02am
Hi Te.rayz,
I have been told to use 2 tablets to start with.
So, 200mg twice a day of hydroxychloroquine sulphate.  I know there seems to be a difference in the doses advised, I am in contact with other women with FFA on another alopecia support website and some have been told to take one pill others like me have been told to take two. 
 
I have also been told by 2 women with FFA that their derms have prescribed anti-fungal meds; GRISEOFULVIN is one that they have mentioned.  Has anyone else had anti-fungals for FFA or any type of scarring alopecia ???
 
Have a good day everyone.. Much love Seni xxxx
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Post Options Post Options   Thanks (0) Thanks(0)   Quote te.rayz Quote  Post ReplyReply Direct Link To This Post Posted: 26/February/2013 at 11:56am
Hi again Seni
 
Re tablets:
Initially I started with one tablet (200mg) per day for 2 months, thereafter it was increased to 2 tablets per day for a further 11 months = 13 months in total and felt fine whilst taking tablets.
 
Re anti-fungal medication:
I was given anti-fungal cream by my GP (think it was called Lotriderm) but it did not help - this was during early days prior to biopsies.  Perhaps fungal cream on its own couldn't be effective whilst scalp 'activity' was at its strongest?
 
Kind regards,     te.rayz
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Autumn1 Quote  Post ReplyReply Direct Link To This Post Posted: 26/February/2013 at 12:41pm
Hi Seni
Thanks so much for your message. I didn't pick it up until after I had seen my dermatologist. But no worries - I had already heard about Hydroychloroquine and Doxycline from reading yours and other peoples posts on here and the other website, and then learned more about these drugs and the recommended dosages from researching on line.

My biopsy confirmed that I do have Lichen planopilaris. I was expecting it so I wasn't suprised. My derm was impressed that I was so well informed about the condition. I think he was expecting me to have never heard of it. He examined my scalp again and said that there was inflammation around some of the the hair follicles so the condition is still active. It is strange because I have very minimal scalp irritation though I have a slight burning sensation around the eyebrows - where the hair used to be and what is left of it, which isn't much!  I wanted to see what he would suggest as a first line of treatment. I didn't have to ask him to prescribe Hydroxychloroquine.  He suggested it to me himself but has only prescribed 200mgs daily. I didn't question the dose at the time but now I am wondering if I should have done so and that maybe I should call him to ask if I can take it twice a day? He also prescribed Dermovate scalp lotion.  I did ask him if he knew Dr Harries and he does know of him.

Good luck with your treatment! xx
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Autumn1 Quote  Post ReplyReply Direct Link To This Post Posted: 26/February/2013 at 12:51pm
Hi te.rayz

Just to say thank you for your good wishes. Lichen planopilaris confirmed as I suspected. At least, trying to look on the bright side, I have a diagnosis now and can start treatment.

Did Hydroxycloroquine work for you? xx



Edited by Autumn1 - 26/February/2013 at 12:59pm
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te.rayz View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote te.rayz Quote  Post ReplyReply Direct Link To This Post Posted: 26/February/2013 at 11:11pm

Hi Autumn

 

Glad you’ve got biopsy results – just bit surprised to read it’s LPP since I was expecting FFA . . . . either way, both are awful conditions and, it appears, with many similarities.

Have often wondered what the main difference is between these two and thought perhaps it might depend on location?  i.e.  Front hair line = FFA     Crown of head = LPP

Anyway, as you said, you’ve got the diagnosis now and can make a start with treatment   Thumbs Up

 

I would not worry about the tablet dose because your derm might increase this at your next appointment – my consultant increased my dose once she felt it was okay to do so.  Also you have Dermovate scalp lotion therefore are using both topical and oral medication.

 

You’ll see from my previous post that I took hydroxychloroquine sulphate tablets for 13 months, and yes, taking everything into account, it would appear that it helped my scalp.  I endured a lot of thick scaling (but no pustules) and had intense burning for about 8/9 months however the burning had subsided somewhat by the time I started the tablets; nevertheless my consultant felt some inflammation still remained and the likelihood of it spreading was possible therefore it was felt the best course of action was to take the tablets.

 

I wish you well with your medication and keep us updated!

te.rayz      x

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Autumn1 Quote  Post ReplyReply Direct Link To This Post Posted: 28/February/2013 at 10:02pm
Hi te.rayz and everyone.
I seem to have both forms of hair loss - As well as a receeding hairline and eyebrow loss, I'm also losing hair from the crown and it's getting worse all the time. Both are being caused by Lichen planopilaris which is in the active stage. The top of my scalp and around the hairline is quite itchy at the moment - this is a new symptom.  Just as well I have the Dermovate scalp application to use. If I comb my hair over the thin area it doesn't look too bad as long as I don't go out on a windy day! I wear a fur hat when I go out at the moment which looks fine as the weather is so cold.  No one would guess the real reason. Plus my head gets cold as I have so little hair! Must be a common problem for everyone with Alopecia. So glad I have some drug treatment at last. I know there are no guarantees that it will work but I'm trying to stay positive Smile

Hope your treatment works for you too Seni.

Take care everyone
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