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SCARRING ALOPECIA

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Pavla View Drop Down
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Joined: 15/June/2014
Location: Newcastle
Status: Offline
Points: 80
Post Options Post Options   Thanks (1) Thanks(1)   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
Status: Offline
Points: 23
Post Options Post Options   Thanks (0) Thanks(0)   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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Afraid View Drop Down
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Joined: 30/October/2017
Location: North East
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Points: 2
Post Options Post Options   Thanks (0) Thanks(0)   Quote Afraid Quote  Post ReplyReply Direct Link To This Post Posted: 31/October/2017 at 7:04am
Dear Pavla

I have just been diagnosed with scarring alopecia and I feel devastated.   I notice you live in the north east and wondered if I coul meet with you at some point?

Your journey seems to be the most positive I have read.

Best wishes
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Pavla View Drop Down
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Joined: 15/June/2014
Location: Newcastle
Status: Offline
Points: 80
Post Options Post Options   Thanks (0) Thanks(0)   Quote Pavla Quote  Post ReplyReply Direct Link To This Post Posted: 31/October/2017 at 9:51pm
Whereabouts in the North East are you?  Feel free to send me a private message if you want to chat further.
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