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Scarring alopecia.
Anyone on here have you ever been diagnosed with that. And if so did you have to get a skin biopsy.
Replies to This Discussion
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Permalink Reply by Pavla on
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Yes....they took two samples, one 4mm across and the other 4mm in depth.
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My daughter I think has this.Her hasn't grown back in two years. The dermatologist said she has no scarring on her scalp.But why it want grow back? It's at the back of her head.Can you tell by looking at the scalp.She has used creams they didnt work.She said the shots will work. We havnt tried that yet.She has two large patches.Its been almost two years now.The back did grow back a little. What causes scarring alopecia, She is only 18.I am so depressed I cry everyday for her.
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Hi Kimmy,
I was diagnosed with scarring alopecia by having a scalp biopsy, almost 3 years ago. They numb your scalp so it does not really hurt, it took about 3 weeks to heal. I was told to use a steriod type foam on the affected area twice a day for 2 weeks on and then 2 weeks off. The hair loss has continued very bad on the top, I still have bangs but even hair on the sides has gotten really thin with lots of shedding when brushing. My hair also has a very weird texture now, has become baby fine and is hard to style, has anyone else experienced this symtom? My dr. recently prescribed Hydroxychloroquine generic Plaquenil, a pill you take twice a day, but I think I must be allergic to it as I had a bad reaction so will not be taking it. I have heard the hair loss sometimes just burns its self out and it stops, but the hair in the scarred area can not regrow. I am hoping mine stops as I could get by with colored powder on my scalp and pulling my hair up on top my head in a clip. I bought a wig, but it just seems like too much hair and looks "wiggy". I also see on the foam medicine for my scalp it says "do not cover with a bandage" and I wonder if using the foam and then wearing a hat or wig is bad.
I keep hoping a better treatment will come along. Also wondering if taking supplments to help your immune system just for good health is bad, since it is an over active immune system that is causing the inflammation that is killing my hair.
I would love to hear from anyone on these subjects.
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I do not know for sure what caused the scarring alopecia, because my Derm. Dr. said there doesn't seem to be enough research to confirm any theries. There is some thoughts that it could be triggered by antibiotics, hot sun light on the scalp, or a predispostion from other weird skin things that have happened to you. Some examples are if your arm hair seemed to disappear some years earlier, etc. they just don't seem to know the cause. The CARF website has some information, and they are also tooking for donations to do research. They have a conference every other year in the US, inviting doctors and patients to come. I have not been to any of these as it usually requires lots of travel expenses, hotel and cost of the conference clear across the country from where I live. We do all need to stay connected and communicate our treatments and what is working and not working. My Dr. seems to know a lot about it but still not any treatment that really works. Both kinds of steriod scalp lotion and foam, have not really done anything to stop my hair loss. It just continues and I don't really have any hope of having enough hair left to really style my hair in a good way. I just try to think that other than the slightly itchy or tingly scalp, I am not in pain and it is not life threatening. Some days it is hard to count your blessings, but I try. I hope the small amount of us scarring alopecia girls can stick together and update each other on anything new.
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I live in the U.S.The only hope im holding on to is it starts at the top of the head.Her started at the back of her head and moved up.It all started when she got burnt with a flat iron. We really havnt been treating it.She used the cream for a lil while but it turned one area of her scalp brown. Did you all have discoloration of the skin or any sores?
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Hi , I have been diagnosed with lpp and ffa hair loss. I'm devestated I know it's not life threatening but for me as I have lost a huge amount of hair as it took the doctors over a year to take me seriously, it is life changing.
Has anyone had a cure or hairloss slowed down. Would love to speak to someone who understands x
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Hi all- just wanted to jump on board this discussion even though it hasn't been active in quite some time. I was recently diagnosed with LPP. I'm going through all the emotions you would expect. Some days are okay while others are really hard. I'm hesitant to get on the medication due to the harsh side affects as well as no guarantee it will work. I am doing steroid injections as well as a topical steroid in addition to changing my diet and introducing anti-inflammatory type supplements. I have no clue if they will work but I'd rather try the safest options first.
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Hi, I was diagnosed 3 years ago, had hoped that the hair loss and symptoms would stop after a few years as I had read about "burn out" ending the problem and although the hair would not grow back I thought I could work with what I had left so as not to need a wig. So far symptons come and go, no matter if I am using steriod foam or not. After following many comments, it seems to me that the outcome is the same wheather you are on steriod pills (too many side affects for me), doing topical, anti inflammoatory diet, avoiding stress etc. The symptons go from bad to "I think I am over it, and have my life back". For me the symptons from taking internal drugs, were not worth it. There is no proof that if you are taking the drugs that a short remission has anything to do with the drugs. I have found I will go through a few months, without any treatment and everything seems like I could be over it. I have also been taking treatments and have continuing symptons (itching, burning, hair loss not just in the scarring area but also overall thinning in uneffected areas. Until they come up with some treatment that is a cure, I willonly continue topical foam. I have found really great ways to hide the bald areas, so no hairpiece yet. I grew out my short haircut and by pulling my hair up on top and using Caboki hair fibers I am doing OK. for now. I bought a wig, but it was so thick and not anything like my regular hair, I have never worn it. Does anyone know if there are hairpieces or wigs with a small amount of hair?
Thanks,
Sheryl
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Yes I have been diagnosed with scaring alopecia. I was diagnosed by dermotoligest. I have been treated now for about 7 months. I was told there is no real cure but that treatment can slow down damage. I have been getting injections. Using clobatisol, taking propecia. My hair has turned into baby fine. I am still able to cover bad areas by teasing my hair. I dont feel like these treatments are slowing down my hairloss. I will go to eye doctor prior to starting on Plaquinel. There isnt much more can be done but watch it fall out. Definately causes anxiety in my life. I will wear a wig if it gets bad enough. Is there anyone who has had any remission. I understand there is no cure but it will eventually burn out.
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Permalink Reply by Kimmy Kimmie on
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I have been diagnosed with it about 17yrs ago. I did everything. I had the skin biopsy, I did injections, creams, Pills (steroids), laser stimulation. You name it I did it. I stopped straightening my hair. I was shocked because no one else in my family has it. The doctors said they don't know what causes it. Now mostly all of my hair at the top and middle of my head is gone. And I was so sad about it because My hair was long and thick. I don't have the scarring anymore, my hair just gradually falls out with combing, brushing and washing my hair.
Has anyone had hair grow back?
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I was diagnosed with LPP in August 2017. Have had hair loss for one and half years and I attributed that to stress and hysterectomy and totally ignored it. Finally went to see the derm, he did a biopsy and said I had LPP. Have been very devastated, and feeling helpless since hearing that. Applied clobetasol solution twice a day for a month and than had to discontinue it as was getting bad headaches. Have been taking plaquenil for a month now. I have Dr's appointment tomorrow, lets see what he says. I have also started drinking horsetail tea and nettle tea as I read somewhere that it helps with inflammation.
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