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SCARRING ALOPECIA

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Mrs Mc View Drop Down
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Joined: 07/February/2016
Location: Devon
Points: 18
Post Options Post Options   Quote Mrs Mc Quote  Post ReplyReply Direct Link To This Post Topic: SCARRING ALOPECIA
    Posted: 08/May/2016 at 4:49pm
Dermovate is not working and the burning on my scalp  is getting worse. I don`t even care about the hair loss anymore I just want to feel like me.  I don`t know what to do.  What medication is available that can solve my problem.  I have an appointment with my dermatologist next week and want to be armed with necessary options. Ive had three years of this misery and am simply coming to the end of my tether.
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CoachJudith View Drop Down
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Joined: 28/June/2016
Location: United Kingdom
Points: 23
Post Options Post Options   Quote CoachJudith Quote  Post ReplyReply Direct Link To This Post Posted: 16/August/2016 at 9:33pm
I too have Scarring Alopecia. After having treatments that cost me £450 every week all that was growing back was something that looked like duck down!  After trying everything I could find, in the end I finally accepted that I was going to have to live with it.  I even lost parts of my eyebrows so I had them tattooed in.  I work with a lot of clients who have one form or another of hair loss and Acceptance is a huge part of coming to grips with our conditions. I know for myself once I realised I was more then the hair on my head and that my hair was an accessory I coped much better.  I think as women we go through a grieving process.  What was will never be.  If I can help you in anyway, please let me know. I am listed on the Suppliers page http://www.alopeciaonline.org.uk/suppliersDirectory.asp?cat=5&where=&distance=&keywords=Judith+Lowe+Life+Coach+&submitted=true

CoachJudith 
"She Believed She Could And She Did"



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Lesley10 View Drop Down
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Joined: 21/August/2016
Location: Norfolk
Points: 14
Post Options Post Options   Quote Lesley10 Quote  Post ReplyReply Direct Link To This Post Posted: 23/August/2016 at 8:10am
Hello, I was diagnosed with FFA early this year. I have been prescribed topical Betacap, Synalar and Etrivex and injections in my scalp and also tried Tacrolimus. I think Tacrolimus may have helped the most but it's so greasy, I don't want to be seen out. The burn may lessen for a while but it comes back and one side over my ear is bald. I can wear my hair so it doesn't show too much but my hair is thinning all over and I am starting to recede at the front.
I have been offered Hydroxychloroquine but because I am 64, with some eye problems anyway, I am told I may be at high risk of the side effect of damage to retina. I am so desperate, I may go on it though.
At 64, I have always felt my hair was my crowning glory. I feel that I will just be ugly without it.
I also consulted a dietician privately and have tried to avoid wheat and dairy. I eat healthily and have spent a a lot of money on supplements. I have also started HRT.
Guys Hospital is asking for women with this condition to take part in their research. The consultants name is Dr Tziotzios.   I did this. They just took my medical history and blood tests. They refunded my travel expenses. He felt my problems started because of too much stress.
So I know how you are feeling. It's a bummer but what more can we do but try to be positive and not stress.


Sent from my iPad
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Lesley10 View Drop Down
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Joined: 21/August/2016
Location: Norfolk
Points: 14
Post Options Post Options   Quote Lesley10 Quote  Post ReplyReply Direct Link To This Post Posted: 23/August/2016 at 8:11am
PS, can you please tell me what treatments you had that cost £450 per week and where did you,have this?
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CoachJudith View Drop Down
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Joined: 28/June/2016
Location: United Kingdom
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Post Options Post Options   Quote CoachJudith Quote  Post ReplyReply Direct Link To This Post Posted: 23/August/2016 at 11:56am
Hi there! 

Gosh, it sounds like you have tried everything and are at the end of your rope!  I am in my 50's and 
like you my hair was ALWAYS my crowning glory.  I was devastated. I even lost my eyebrows and eyelashes.  All I did was cry.  My poor hubby would say, "We're not going through this again are we?  Mine was a combination of stress and hormones (Lucky me)  I too kept looking for that 'MAGIC" solution to get my hair to grow back in, but the more I looked, the more frustrated I became..Of course when nothing was working, I would become even more stressed and more hair would come out.  I was on an emotional roller coaster and felt like a hamster going round on a wheel!!    I went to Phillip Kingsley in London.  He is known for saving Audrey Hepburn's hair, but the results were very poor after several treatments at £450 each.  Being a the profession I am in, I began to seek out advice from my Coaching Colleagues and after working on ACCEPTANCE and looking at who I was as a person, on the inside I began to realise I was much more then the hair on my head!  It has been a long journey, but one that has taught me a lot.  I now have an integrated hair system (after trying several wigs) and it is a great solution to a problem.  One thing I found, especially with the wigs I was afraid they looked like a wig. I was very self conscious.  Now, I don't even think about it. I do everything I used to do and more.   My condition caused me to even change from being a Business Coach to a Health and Wellness Coach.  I have several clients now that have been on this journey of hair loss.  Everyone's experience is different because we are all unique individuals. I read an article that a young woman had written who has Alopecia (AA) and she made a comment that has stuck with me.  She said, " My hair is just an accessory"  I am wonderful with or without my hair.  This girl was about 16!  (wise beyond her years)  I guess we have to ask ourselves, "What does beautiful look like?"  I also think we go through a grieving process.  If I can be of any help, just let me know.  My information is on the Supplier's page. 

Good Luck with your journey. 
Coach Judith 
"She Believed She Could and She Did"! 


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Lesley10 View Drop Down
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Joined: 21/August/2016
Location: Norfolk
Points: 14
Post Options Post Options   Quote Lesley10 Quote  Post ReplyReply Direct Link To This Post Posted: 23/August/2016 at 12:43pm
Hello Coach Judith
Thank you so much for your reply. I have to say it brought a tear to my eye. I went to a locaL hair dresser that sold Philip Kingsley products and was very put off by their sales talk. My instincts told me they were all about making money.   I am divorced, recently moved and my children and grandchildren are overseas so feel very alone with his problem. Wish I had a hubby to tell me he loved me anyway!!

I am new to site and couldn't find the suppliers page to find you. I will try again.
Thank you
Lesley10

Edited by Lesley10 - 25/August/2016 at 8:24pm
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Happy Gardener View Drop Down
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Joined: 03/June/2016
Location: Norfolk
Points: 6
Post Options Post Options   Quote Happy Gardener Quote  Post ReplyReply Direct Link To This Post Posted: 25/August/2016 at 8:08am
Good morning world, having at last had a Dermatology appointment I have been offered Dermovate or Hydroxychloroquine.  I originally chose Dermovate and am due to start today, but am now thinking Hydroxychloroquine would be better, although I understand it can take sometime to take effect and it has taken forever to get to this point.

Can anyone share their experiences of these two treatments please and has anyone tried using them at the same time. Many thanks.

Happy Gardener

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Mrs Mc View Drop Down
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Joined: 07/February/2016
Location: Devon
Points: 18
Post Options Post Options   Quote Mrs Mc Quote  Post ReplyReply Direct Link To This Post Posted: 25/August/2016 at 10:44pm
My hair loss story spans four years. Initially diagnosed with TE and then Chronic TE.  During this period I have seen my GP,  (was not really interested and gave me the usual reason - my age/stress) a trichologist and a private dermatologist.  Minoxidil was suggested, which I have used off and on.  Fast forward to August 2015 and the hair loss escalated and I  was (still am)  losing massive amounts of hair.  Possibly lost about 70% of my hair to date. However this time the hair loss  was diffuse and   was accompanied by painful burning scalp.  In desperation I went back to my GP who referred me to a dermatologist (or so I thought!). However I was actually referred to another GP who `had an interest in dermatology`.  He carried out a scalp biopsy which confirmed Lichen planus (scarring alopecia). 
 His first course of action was to prescribe Dermovate.  This  had no effect. When I went back to see him  he indicated that perhaps the best thing to do was for me to shave my scalp entirely  in order that the Dermovate  could more easily get to the source of the problem.  This I refused to do.  He then prescribed me a course of oral steroids for 10 days.  These didn`t work.  The LP is now in my mouth and the hair loss and burning scalp continues.  I saw him last week and he advised that he could do nothing further and he would refer me to a dermatologist!!  I`ve now received an appointment to see the same  dermatologist who I saw on a private basis two years ago!  I have therefore gone full circle without any  positive results and feel I have lost a year in trying to resolve this problem   or at least abate the hair loss and scalp burning.  I an now having blood tests carried out and an eye test, in readiness for my appointment  as it`s likely the dermatologist may suggest taking an anti material drug which can have serious side effects for some people but can have positive effects for hair loss.  It`s all very much trial and error in this hair loss game and I`m sorry I can`t offer you any positive news at this point
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Lesley10 View Drop Down
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Joined: 21/August/2016
Location: Norfolk
Points: 14
Post Options Post Options   Quote Lesley10 Quote  Post ReplyReply Direct Link To This Post Posted: 26/August/2016 at 7:22am
Hello, I am so sorry to hear all that you have gone through. My history of scarring alopecia is only one year and I started Hydroxychloroquine this week. Initially I refused it because I was afraid of the side effect of possible damage to the retina but became desperate when the burning and hair loss escalated despite steroid and Tacrolimus. I am 64.   My problem is mainly on one side of my head with general thinning elsewhere. At the moment, I can still wear my hair to hide the bald area. After reading posts on this site, it seems so many of us are suffering and many say we have to learn to accept it. It comforts me to read other people's post. I do wish you well and I will post on here how I get on on this anti malarial drug.
All my best wishes, Lesley
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CoachJudith View Drop Down
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Joined: 28/June/2016
Location: United Kingdom
Points: 23
Post Options Post Options   Quote CoachJudith Quote  Post ReplyReply Direct Link To This Post Posted: 29/August/2016 at 8:26am
Hi There! 

Lovely to her from you.  The Suppliers page is at the top under Resources, you will see link that says Supplier's Directory.  I am the only Coach on there.  I agree, Phillip Kingsley is very expensive for what you get, not to mention that it doesn't work! How are you coping? My husband is supportive to a point. I don't think he actually understood what was going on with me, just that I was pretty miserable.  Strange, how we get in our heads that our hair is all that important. If I learned anything it is NOT to stress over it, I was only making things worse.  It is a difficult journey, but once you come to grips with it even though it is still there, you won't be so concerned about it.  

Please let me know if I can be of support. 

CoachJudith 

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Pavla View Drop Down
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Joined: 15/June/2014
Location: Newcastle
Points: 83
Post Options Post Options   Quote Pavla Quote  Post ReplyReply Direct Link To This Post Posted: 29/August/2016 at 8:19pm
Hi Happy Gardener...I've been using Dermovate and Hydroxychloroquine (anti-malaria drug) together for two years now.  Also use Minoxodil (5%) for the same length of time.  Dermovate once a day (at night), two Hydroxy tablets a day and Minoxodil twice a day (morning and night).  I use the foam Minoxodil as it's not as greasy.  Used to use Synalar Gel but my Dermatologist soon changed that (it was a Private Tricologist who recommended Synalar Gel and Minoxodil).  Fortunately, my Dermatologist specialises in hair problems and has studied under the best in the business (Dr. Jerry Shapiro at University of British Columbia) so I feel as though I am in safe hands.  I no longer get the sterioid injections into the scalp (had those for about a 18 months).  My hair loss has definitely stalled, apart from above the right temple.  I get my eyes tested every 12 months (as Hydroxychloroquine can result in eye damage)...I was relieved when my Optician said that he had seen quite a few patients on this drug and not one of them had a problem.  My Dermatologist is taking part in Christos' research and fortunately I didn't have to travel down to Guy's as they could interview me at my local hospital.  Afterwards I asked the research nurse if they had noticed anything that linked all of the interviews.  She said that everyone had mentioned that 'stress' was in their lives before the hair loss.  With me it was the death of both parents within weeks of each other, after both being diagnosed with the same terminal illness.  After I had nursed them, shortly after their deaths my brother was diagnosed with cancer.  He battled through and is a 'survivor' but the treatment he had to endure was absolutely horrific and if he hadn't been such a strong man he wouldn't have made it.  Then, my other brother was diagnosed with cancer and unfortunately he died...it was during the last few months of his life that I first noticed my hair loss.  I was 49 at the time and had never suffered from stress before.  If my hair loss remains as it is then I can cope with it as I can hide it quite easily (although I do get a bit paranoid on windy days!).  My husband is so supportive and loving and my friends and family who know about it are too.  In fact, when I tell someone about my hairloss they look at me as if I'm mad as it is far from obvious...long may it stay that way!! :) 
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CoachJudith View Drop Down
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Joined: 28/June/2016
Location: United Kingdom
Points: 23
Post Options Post Options   Quote CoachJudith Quote  Post ReplyReply Direct Link To This Post Posted: 29/August/2016 at 10:46pm
Hi Lesley, 

Checking to see if your ok.  Here is the link to the Suppliers page http://www.alopeciaonline.org.uk/suppliersDirectory.asp?cat=&where=&distance=&keywords=Judith+Lowe+&submitted=true

I was going to be at the Alopecia Big Weekend and I am disappointed that I could not make it this year. 
Too many other commitments got in the way. 

Are you going?  It looks it is going to be a huge success! 

Stay positive! 

CoachJudith 
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