Cicatricial (scarring) Alopecia

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Cicatricial (scarring) Alopecia

Cicatricial (scarring) alopecia refers to a group of rare disorders which destroy the hair follicle and replace it with scar tissue, thereby causing permanent hair loss. Those afflicted with this type of alopecia are faced with some special needs.

Website: http://www.crownedregal.com
Members: 91
Latest Activity: Jul 20

WELCOME TO THE CICATRICIAL ALOPECIA GROUP

Discussion Forum

Early stages...need help!

Started by MandaDeuce. Last reply by MandaDeuce Jul 20. 7 Replies

Anyone tried Dermovate?

Started by Rosie. Last reply by chris for hair Mar 13, 2013. 5 Replies

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Comment by Debs on July 13, 2014 at 7:16am
I have been to a medical herbalist in the UK, just outside of London, i have stopped taking all my meds about 5 months ago because the hair loss was continuing and I had side effects, very bad tummy upsets, from the antibiotics. I have a tincture to take 3x a day, herbs to put in boiling water to make up a hair rinse to use after shampooing and an oil to rub into scalp once a day. I wanted to get the inflammation in my body under control because I have now developed an eye complaint that is caused by inflammation too. I still use the anti inflammatory diet and supplements. I feel the way forwards with my health is to use a holistic approach to my health.
Comment by Debs on January 18, 2014 at 11:01pm
I have my tattoo done privately I had no idea that it could be funded by the NHS. I make sure I get my NHS funding for my wigs, this only covers part if the cost but we are entitled to it so I make sure I apply for it.
Comment by Amilda on January 18, 2014 at 6:36pm

 To have my eyebrows tattooed at the hospital would cost me £300.00.

Other's with Alopecia have had them done for free at the same hospital.                    So I feel rather disappointed that I have been refused, maybe it's because  of old age I may be seen as none important. Ah! well!, I shall still stand for my right and be counted.........

Comment by Debs on January 18, 2014 at 2:41am
I have my eyebrows and eyelashes tattooed it was a huge boast to my confidence many of us with FFA and other types of scarring alopecia have this. I would ignore your derm tattooing your eyebrows has no effect on our hair loss so do what you want. There is no medical reason for your derm to say this in fact I was recently at a conference fir people with scarring alopecia and 3 derms attended and tattooing eyebrows was presented as an option for us to use if we lose eyebrow hair.
Comment by Amilda on January 17, 2014 at 8:36am

Hi! Debs,

Happy New Year! everyone.

I did use Betnovate on my scalp for 6 months.Then last year my Dermatologist at the QE. Hospital, advised me to use Dermovate for 6 weeks only- to ease the redness on my scalp- no good- it made me feel ill with headaches.  So I  went back to Betnovate some mornings  and evenings, when I take off my wig to ease the itchiness I use it and especially after a shower, the Betnovate gives me relief but does not stop the scalp redness and itchiness. In February this year, I will see my Dermatologist and see what else is on offer. I do believe though, that the Steroids are not doing my failed Immune system or my health any good.  Also the Dermatologist refuses to allow me to have my eyebrows Tattooed ,[do not have any]  says it's only cosmetic .

Hi! Rosie,

Where can I purchase this - 'Oilatum Shampoo' ?

God Bless you all.

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. 

 

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