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Comment by Geri on January 16, 2014 at 4:57pm

I was diagnosed in November 2013.  Devastated, since I did notice the initial papules on my hairline and a dermatologist misdiagnosed it as an actinic keratosis 3 yrs ago.  Moving forward, an esthetician noticed a demarcation in my hairline. Biopsy confirmed LPP and FFA.  I am taking Plaquenil 400mg, Doxycycline 100 2x daily, clobetasol foam, intralesional injections,  (tried taper of prednisone) and most recently my own addition of  Zyrtec 30mg.  I swear the clobetasol is thinning my hair that is in the normal parameters.  Dr told me to use this 2x daily....since early December.  It is now mid January and it is much worse than before diagnosis. But  How do you apply clobetasol and how much do you apply?  I think I am going to once a day......

Comment by Debs on January 5, 2014 at 10:42am

I have a varient of LPP called frontal fibrosing alopecia the testament is the same.

Drug options

Hydroxychloroquine sulphate (plaquenil)
Tetracyine antibiotics - doxycycline
Dermovate steroid lotion and injections

Some derms are now advising women to use men's strength minoxidil too.

Non drug options

Anti inflammatory diet - see dr Andrew Weil website

Supplements: turmeric, ginger, high dies fish oils, multivitamin and mineral

Comment by kathyd on December 11, 2013 at 2:35pm

Has anyone tried naturopathic medicine for LPP? Special diets or anything?

Comment by Amilda on December 4, 2013 at 4:54am

Hello Debs uk.

thank you  for your reply. I have taken on board what you have said, and am  learning to be good to myself.  and to others.[ it does help].

Love to all with same ' unexpected gift'.

Amilda. x

Comment by kathyd on December 3, 2013 at 10:57pm

Hi! My name is Kathy and I was diagnosed with scarring alopecia from LPP in September. I am having steroid injections and using Dermovate ointment and the inflammation is better but I am still losing my hair. I didn't know that the shedding I have experienced for the last 5 years or so had anything to do with this, I thought it was my thyroid. I have 3 bald spots that I can still cover with my hair but they are getting worse. Any treatment advice on what works and what doesn't would be greatly appreciated. Should I be taking medication on top of the steroid injections? Thanks everyone. 

Comment by Debs on September 13, 2013 at 2:15pm

Hello Amilda, you dont have to come out, this is a private matter and i have only told my mum, brother and a few very trusted friends. Lots of ladies and jen with hair loss have partners so relationships are possible. Our hair loss is not a deal breaker. I am wearing one of my wigs in this photo. I use them as a tool to help me look good but i try very hard not to allow my self esteem to rely on my hair. I am sure you are an intelligent, kind and wonderful person, please see all that is good about you and be very kind to yourself. Hair loss is mentally exhausting to cope with so we all need to look after ourselves. Wishing you well. Xxxxx

Comment by Amilda on September 13, 2013 at 1:40pm

Hi! my name is Amilda, since age 75,I have 'scarring alopecia' it did come gradually,and I do / have to wear a human hair wig, otherwise - I feel like 'max wall' no hair up front. Impossible to have any relationship. I would love some good advice please, how does one 'come out' as they say. So much courage and love of self, inside & out is required.

Comment by Amanda on August 25, 2013 at 8:27pm

Hey there! Not sure if I have posted this here before but I am part of a new Scarring Alopecia support group called CASA. We have members with all types of LPp and scarring Alopecia including, LPP and FFA. Feel free to contact us for more info at Casafiredup@gmail.com. We meet every quarter in Toronto and our next meeting is Monday Sept. 23rd, location to be announced.

Comment by Linda Australia on June 22, 2013 at 2:30am

Hello I have just joined this group. It has been quite a journey coming to terms with cicatricial alopecia.

Comment by Caro UK on March 20, 2013 at 7:28pm

Hi Paula
Really interested to learn the treatment Dr Fenton prescribed for you. I was referred to him by my GP some years ago when I lived in the South East. He is an expert in hair loss. I have always had fine hair but it was thinning badly and he diagnosed Telogen effluvium. My serum ferretin levels were found to be very low and Dr Fenton said I should take Ferrograd C, which I took for several years. There was a gradual improvement in my hair and I felt confident and happy with my appearance. I had no further problems until last year when my hair loss began again. This time there were different signs that something was wrong - my hairline was receeding and my eyebrows disappearing as well. Hair loss is devastating when it happens to you. I felt good about myself, looked younger than my age, then out of the blue this happens! My self-confidence has taken a big nose-dive. Anyway, must try to stay possitive. Yes Debs looks great and she has given us a lot of useful info advice on wigs. Thank you Debs :-)

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