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quick update - biopsy results

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Emz View Drop Down
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Joined: 18/November/2015
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Post Options Post Options   Quote Emz Quote  Post ReplyReply Direct Link To This Post Topic: quick update - biopsy results
    Posted: 29/November/2015 at 9:03pm
Hiya just a quick update,

I went back to the hospital today and i was right i have been misdiagnosed the biopsy has shown that i do have scarring alopecia not androgenic. It has taken 5 years to get a biopsy out of the dermatologist - so for anyone going through this process if you think something isn't right then be persistent.

The biopsy has shown scarring but they are unable to determine what kind so they have to redo the biopsy taking more tissue this time also i have been prescribed hydroxychloroquine, ferrous sulphate and dermovate. 

Just interested to hear how everyone else is getting along with their diagnosis, i guess iv'e spent sometime crying today

Take care all <3 
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Pavla View Drop Down
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Joined: 15/June/2014
Location: Newcastle
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Post Options Post Options   Quote Pavla Quote  Post ReplyReply Direct Link To This Post Posted: 30/November/2015 at 6:46pm
Hi Emz, sorry to hear that you've had scarring diagnosis.  I was diagnosed with FFA back in early summer last year.  Since then I've been on hydroxychloroquine, betnovate, regaine 5% and also get the steroid injections into my scalp (used to be every four weeks but now at every three months).  I'm still losing a little bit of hair (mainly at the temples) so the treatments I'm receiving are hopefully doing their job in slowing things down and, hopefully, enabling me to cope without having to resort to hair replacement systems etc.  The style of hair I have means that I can cover the bald bits quite easily (even though I still get a bit anxious in the wind Cry).  Nearly two years on since I first noticed my hair loss and I still have the odd cry but now thinking about it I can't remember the last time I actually shed a tear.  I still get sad when I look at myself, usually when I come out of the shower and my hair is brushed back off my face, but once I dry it, and style it, I don't give it much thought.  Fortunately, my husband is extremely supportive and loving...keeps telling me not to worry about it, he loves me no matter what I look like and is always telling me how nice I look.  Weirdly I also find it helps that I know the hair is never going to grow back.  I don't think I could cope with the situation of losing hair, the euphoria of it growing back and then the despair if it falls out again.  

Edited by Pavla - 30/November/2015 at 6:46pm
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Emz View Drop Down
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Joined: 18/November/2015
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Post Options Post Options   Quote Emz Quote  Post ReplyReply Direct Link To This Post Posted: 02/December/2015 at 8:30pm
Hi Pavla,

thanks for the reply, i guess your right maybe its better that when its gone its gone. i'm sorry for your diagnosis also, my fringe is thin and starts far back as i have lost hair round the front and also round the sides, i am also going thin on the crown, maybe the next biopsy will show which kind of scarring alopecia i have.
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Susan Jane View Drop Down
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Joined: 08/December/2015
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Post Options Post Options   Quote Susan Jane Quote  Post ReplyReply Direct Link To This Post Posted: 13/December/2015 at 7:29pm
I have just been diagnosed with Frontal Fibrosing Alopecia. I should really appreciate the Fact Sheet if anyone can send it to me.
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Mrs Mc View Drop Down
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Post Options Post Options   Quote Mrs Mc Quote  Post ReplyReply Direct Link To This Post Posted: 24/February/2016 at 10:22pm
I am waiting for the results of my biopsy which I will receive in three weeks. I have suffered hairloss for three years (initially diagnosed with TE and then chronic TE)  but the hairloss has changed in the past six months in that it has become excessive and diffuse and I now estimate I have lost approx 75% of my hair.  That is upsetting enough but I have a constant reminder of the hair loss in that my scalp during the past six months  has been   subject to a painful  burning sensation. It makes my head feel tight and uncomfortable and is constant 24 hours a day. It doesn`t go away but moves to different parts of my scalp. I am now  gearing up to a diagnosis of scarring alopecia. Can anything be done to relieve  the dreadful burning sensation as well as the hair loss and how long is the burning sensation supposed to last for?
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Mrs Mc View Drop Down
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Post Options Post Options   Quote Mrs Mc Quote  Post ReplyReply Direct Link To This Post Posted: 18/March/2016 at 10:45am
I have had a  diagnosis of Lichen Planopilaris this week.  I was pretty much certain that this would be the result in any event.  

My advice to anyone going through hair loss is to get every test available carried out from the outset ie blood tests, scalp biopsy etc.  I have had three years of hair loss and was swayed by so called experts 
(my GP, a private consultant at the Nuffield and  a registered trichologist) advising me that it was a combination of my age, TE and then chronic TE.  However  it is likely that I was suffering from LP all along and it was only the fact that the hair loss really accelerated in the last six months (have lost approx 75% of my hair)  and I had intense burning of my scalp that my GP then agreed to arrange for a scalp biopsy to be carried out.  Visually my hair looks extremely distressed and can be best described as frizzy and angry looking! I feel that three years have been lost from being mis-diagnosed and I would hate other people to have to go through this.

I was referred to a different GP with a specialist interest in dermatology who carried out the biopsy (not a consultant)  and who delived my diagnosis.  He  hasn`t really provided me with much information and the only treatment being offered is Dermovate which I have to put on my scalp.  I have used this for three days .  However  the burning sensation  has not ceased.  Does anyone know how long it takes for Dermovate to  have some effect. Does it actually work in reducing hair loss?  I note that other members on this site have other medication as well as Dermovate to treat this condition and wonder  if Dermovate alone is sufficient.  I asked the `specialist` GP  how long I would need to use this medication and his reply was `How long is a piece of string`!!  I just feel that the treatment I am receiving may be inadequate and I came away thinking I knew more about the subject then he did. I wonder if I need to seek out a consultant who is specialized in this type of alopecia  who can provide information and adequate information. Any thoughts?

Mentally I am now prepared to look for replacement hair but wonder because of the burning sensation in the scalp whether a specific type of wig is recommended  for this condition.  

Any advice would be appreciated.
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N3EMY View Drop Down
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Post Options Post Options   Quote N3EMY Quote  Post ReplyReply Direct Link To This Post Posted: 23/March/2016 at 9:03pm
Hi Mrs mc sorry I can't offer much advice I am only recently diagnosed with lichen planopilaris myself (Feb) it's horrible and I don't think people realise how sore and painful it can be. I sometimes feel like I can't move my face properly as my scalp is so tight?!

Anyway the point of my reply is re my medication. I've been proscribed some steroid foam (twice weekly minimum) and also anti malaria medication to take daily. This combination seems the most popular and first choice for most so quite surprised to see you've only been offered the cream. How often are you to use the dermovate?

I would try and seek a referral to a dermotalogist if I were you. I know mine told me to have the best chance of trying to alleviate the symptoms/slow down hair loss was to try treating both externally and internally.
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CoachJudith View Drop Down
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Post Options Post Options   Quote CoachJudith Quote  Post ReplyReply Direct Link To This Post Posted: 31/August/2016 at 7:56am
So sorry to hear your news.  I too have Scarring Alopecia and admittedly it was bad new and I did a lot of crying as well, that was about 4 years ago. Since  that time I have come to terms with it.  I stopped having treatments etc. etc. because my logic said, "If your hair follicles are dead, it's not going to grow back"  I then started looking for something I could wear, that I was comfortable with .  I tried wigs and was always concerned they were going to move while I was working out. I ended up with an integrated system, which I have had for 2 years.  It has been brilliant, but little did I know at the time I would be moving to a hotter climate and I have found during the summer months, it has been hot and itchy.  I am actually considering having it removed and buying a really good wig!  Sometimes I think our journey into hair loss is one that will always be with  us, but having said that once I accepted I am more then the hair on my head I was ok with it.  If you think about it Hair is just an accessory.  I always tell my clients ACCEPTANCE is the key to living with any form of hair loss.  Once we come to that place of acceptance, I promise it gets easier. 

If I can be of any support, I am listed on the Suppliers Directory under "Other" I am the only Life Coach on there. 
Have a wonderful Day! 
Coach Judith 
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Carol Mc View Drop Down
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Post Options Post Options   Quote Carol Mc Quote  Post ReplyReply Direct Link To This Post Posted: 19/September/2016 at 10:38pm
Hi all
I'm New on here and just trying to get in touch with others for some mutual support. I have been diagnosed with scarring alopecia, 13 months after the first signs of hair loss. Been through lots of lotions and shampoos. Dermatologist told me today I can start on steroid injections (are they very painful)? and Hydroxychloroquine. Just got to wait for specialist nurse to get in touch and arrange appointment. From what I have read on here I'm quite lucky that I'm going to start treatment. It's so hard that the NHS don't fund hair loss properly. My advice is don't listen to GP if they try to persuade you that its hormonal! This delayed my treatment by another couple of months. Keep going back and get a referral to a dermatologist. Good luck to you all out there. Anyone local in East SusS*x? Would love to hear from you??

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lily17 View Drop Down
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Post Options Post Options   Quote lily17 Quote  Post ReplyReply Direct Link To This Post Posted: 21/September/2016 at 11:59am
Hello Carol
well done on joining the forum. I have Alopecia areata and have lost 80% of my hair I had some steroid injections a few months ago for me they were a little painful but bearable( but everyone has their own pain threshold). I hope your appointment comes through soon.
I see you are local to me I am in the hastings area if you like you can inbox me to talk some more.

take care

sending hugs lily x






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Carol Mc View Drop Down
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Post Options Post Options   Quote Carol Mc Quote  Post ReplyReply Direct Link To This Post Posted: 22/September/2016 at 10:26pm
Thanks Lily. I tried to inbox you but said i didnt have permission to do that.
I have 2 letters that came today for next week and the week after. So im hoping this means I can start treatment.
would be great to chat. Would appreciate any tips especially if you know any ideas of how to cope with very hot head which makes the hair i have got all frizzy!!
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lily17 View Drop Down
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Post Options Post Options   Quote lily17 Quote  Post ReplyReply Direct Link To This Post Posted: 23/September/2016 at 8:50pm
Hi Carol

That's great news that you have had some appointments come through. I hope all goes well.
My head gets hot and the hair I have left also gets frizzy as its curly. I use a bit of frizz eaze on my hair and then it looks ok. when my head gets hot I just wash it over with a cool cloth.
keep in touch and let us know how you get on at your apps.
If you want to inbox you can go to my name at the left and click on the arrow then you should be able to do it

Take care

Lily xx
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