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Lichen Planopilaris

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spurredon View Drop Down
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    Posted: 21/March/2018 at 1:04pm
Hi everyone

I recently joined this website to find gain some comfort and support. If I can pass on my story and any experiences during the course of this condition all the better. I am a man of 73 and first noticed the itchy scalp in March 2015. My hair at that time was thick and healthy. My wife had suffered a rare condition prior to me experiencing this problem and I had become very stressed. With the first signs of hair loss I saw my GP. After months of no improvement I bullied the GP to refer me to a Dermatologist. I had a biopsy and it was confirmed as LPP. I did not receive much in the way of help but was referred to a hair and scalp specialist in Gloucester Dr A Takwade in Dec 2016 privately. She prescribed Hydroxychloroquine 400mg daily and using Fexofenadine and Dermax shampoo. I saw this lady on twice more under the NHS the last time in late June 2017. She could see no signs of LPP scarring and the Hydro was reduced by 200mg and finished in October 2017. I was then still losing hair and my scalp was burning and itching. I lost faith with her findings and went private to the London hair and scalp clinic a Dr Wade in Feb 2018. He said I still had LPP and placed me back on Hydro 400 mg. He told me that the treatment should have continued for at least two years. I see him again in 6 months. If you have Hydro treatment remember to take a benchmark on your eyes every year. I would like to have contact with any of you out there. I guess would say has a man it is not so bad but my three years of this has made my life unbearable. Appreciate any comments

George North Devon
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Francesca View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Francesca Quote  Post ReplyReply Direct Link To This Post Posted: 21/March/2018 at 3:52pm
Hi George

Like you I have been diagnosed with LPP.  I was diagnosed last December after first seeing my Dr. back in Nov.2015 with loss of hair on my crown. Last Nov. I had a biopsy done and along with the diagnosis was given Dermovate 0.05% scalp lotion to use once a day.It does seem to make my scalp a little sensitive/sore, but whether it can halt my hair loss or at least slow it down who knows. I am due to see a different Dermatologist in May, so am not sure what to expect.
All I can say is that when I was first losing my hair I was devastated and felt very self conscious all the time. Once I was diagnosed with LPP it came as a bit of a shock to know that my hair would not grow back, but also relief to know what I was suffering with and all I can say is that I try and feel more positive these days, although some days are better than others. 
I hope my reply may help you to know that there are other people out there who know what you are going through and hope that we can all support each other in times of need.
Take care
Francesca.
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spurredon View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote spurredon Quote  Post ReplyReply Direct Link To This Post Posted: 23/March/2018 at 2:13pm
Hi Francesca

It is good to hear from you. I am sorry you are suffering from the same condition. As I said mine strarted in March 2015 with the itchiness and gradual hair loss. I chased a solution from day one and I have seen four dermatologists to date. I am in a position to go private and latterly used a dermatologist in Holborn. I guess it should be less painful for me as I am a man of 73 years of age but I had a full head of hair up to the last few years. The preferred treatment appears to be Hydroxychloroquine together with Dermovate. I use Bettamousse for the itching and burning. This condition has made me a bit of a recluse and it makes me depressed. I am considering seeing a professional to help me cope mentally. Please keep in touch and if you have tips on medication or any websites I can visit do let me know. Best wishes, George
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Francesca View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Francesca Quote  Post ReplyReply Direct Link To This Post Posted: 23/March/2018 at 2:49pm
Hi George,

thank you for your reply.  I am sorry to hear how low you are feeling. It may be a good idea to see your Doctor and explain how this is affecting you in such a negative way, hopefully he /she can be of help.
Have you checked on this site to see if there are any support groups in your area? It may help if you could meet up with someone locally in your area for a chat and support.
Best of luck. Keep in touch.

Francesca
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spurredon View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote spurredon Quote  Post ReplyReply Direct Link To This Post Posted: 24/March/2018 at 12:45pm
Hi Francesca

I have considered using a man who I have used in the past for anxiety issues. Might well go down that path. My doctor is sympathetic but takes the view I am with the right people i.e. a dermatologist. Unfortuately it is a rare condition. I am delving through this website trying to find a local group but being in North Devon there appears to be none. Perhaps I need to go further afield. Perhaps a trip to London I was born in Islington and worked most of my life there. I really appreciate your thoughts. I feel quite alone with this problem. Good luck with that dermatologist visit. Keep in touch

George
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