[dustyk]

Hi,

I was diagnosed about 5 years ago. I have taken every cream, foam, and pill to try and slow the process. I was sent to a specialist at Northwestern Univ Hosp in Chicago, and they also said that I will never get back the hair I've lost. They gave me the foam to stop the itching and plaquinil to slow or stop the hairloss. The meds made me itch so bad I had to stop taking them. I would itch so bad that I would have to soak in water so hot it would almost burn my skin. Now, 3 years later, most of my hair is gone or is spotty. I shaved my head to hide it, but my dark roots make me embarrassed to not wear a hat all the time.
I was wondering if anyone has experienced this itching. It feels like millions of needles are stabbing from the inside of my skin out. I usually take about 1-3 allergy pills to stop it or get in the hot water. My dermatologist has never heard of this itching feeling. He said to just keep doing what I am doing when it happens. The itching has been really bad lately. Anytime I sweat or get water on my skin, it starts.
I look forward to hearing from anyone. Also, I have had a hard time finding any websites where people with LPP actually communicate. This is the first I've found in years. Do you know of any others?

Thanks, Dusty

[luciebelle4]

Hi Dusty --- i know how you feel. When I was first diagnosed, I thought there were "things" crawling around inside my head. That's exactly what it felt like. I find that a really cold compress on top of my head for as long as I can is helpful. I am using lots of creams and getting shots of cortisone into my scalp. My doctor has really no encouraging words for me other than telling me I need a lot of patience for this horrible illness. My hair is falling out and the itching at times is awful . I don't know of any other web sites. Try the cold compresses rather than the hot. Let me hear again from you. It's good to have someone to "talk with".

[dustyk]

I think I tried cold before. I will try it again. Who knows? I forgot to tell you that when the itching starts , it is all over my body. Not just my head. Right now, I am sitting at work and my head has been itching all day. With the Summer humidity, the other itching has been crazy lately. I took 3 (24 hr) allergy tabs yesterday and 1 already today. It freaks me out a little bit because the directions say to take 1 per day. I am sure that something else will develop from taking too many of those. Let me know if you have had the all over body itching.

[spokangie]

Hello.
I would like to share with you an update to my continuous problem. Since my last post I have had a biopsy of the scalp done. It showed that I had thickening of the scalp but planopilaris is still a maybe, it did not confirm that I have it nor did it rule it out. The solution for my itching and painful scalp was a Flouconimide solution to the scalp once a day for a month, then I was to return for a consult. I have to tell you that just after using the solution for a cople of days my scalp stoped itching and hurting. The tight feeling that I had like someone placed my head in a vice is gone too, I can even tolerate a hat. I still get occasional tingling if I put too many products in my hair, I try not to rub the product in rather just gently spread it over my hair.
I also have contact dermititis that might be contributing to the reactions of products to my scalp. I still color my hair but have it done by a stylist and with a very mild bleach. There go my blond days, back to being a brunette.
Back to the Dr's findings after one month: She had found no further balding spots tiny as they were on my scalp, thus the possible ruling out of Planopilaris, but not completely, the jury is still out on that one. I was told to continue with the solution for a while longer and to start gradualy reducing to every other day then once a week, until I feel comfortable.
I was given the ok to color my hair but was told to avoid harsh bleaches. My scalp had no longer the thick layer of derma over it. I have to use a Zinc shampoo that will remove any deposits that my atribute to my scalp going to the previous state. My stylist recomended CREW dandruf shampoo, it has a stronger concentration of Zinc but it leaves my hair feeling silky. I also use a leave in conditioner that she recomended that repairs damaged hair.
I have tried other shampoos Nioxin is good but It left my scalp tingly and did nothing for the tight feeling. The special treatment left my scalp red and inflamed, I have a sensitivity to Niacin.

As far as my Lichen Planus she didn't have any answers for me there, I was told to see a Dentist or a ENT for further evaluation. I had told her that I had already received the report from one and what he had said, she was appaled that he just dismised it with " you are stuck with it " attitude. She gave me a name of another one but he is in the same office as the one that told me " just live with it".
She gave me a small prescription of Clobetasol as my lichen flared up again, but insisted I have another byopsy done. As far as she was concerned 5 years is way too long to go without a solution.
I still have flare ups, my right cheek feels like I have a contnuous toothache, a mild one, the sensation rarely goes away. I can't swish water on that side as the cheek starts to hurt. When I wash my face or put cream it is not painfull but sore. I have days when out of the blue a sharp pain will shoot from the spot, when I look in my mouth I see a white streak, so it is back to the jucky cream again. In a couple of days it looks like it is gone but I can see redness, the skin inside looks different than my left inside cheek.

We don't have Dental so any visits have to come out of our pocket, money that we just don't have right now. One solution would be to have the amalgam removed but that would be too costly, the insurance won't pay even though it is medicaly necessary. I know some people will say what is more important than your health, but when the money is not there, it is not there.
The Dermatologist told me that if I need a letter she will be more than happy to writte one but first I have to see either one of the Dr's to find out how bad is it.
She still feels that one is related to the other, the hair loss and the mouth sore.

At least I can share with you my progress with Planopilaris, perhaps it will help someone to try what I did and improve their lifestyle.
Maybe someone can tell me what other options I have with my mouth sore, I realy am afraid that someday it may turn to mouth cancer. There have been herbal remedies but I am afraid to waste my money on them, especially when the strongest steroid cream doesn't heal it.

I hope this post has helped some of you out there, please let me know if it did.

Thank You
Angie

[spokangie]

I have just one question, Have you seen a Allergy specialist for your itching. My daughter had this when she was little, they even tried artificial sunlight with her. She has realy severe allergies some that would kill her. She also has severe contact dermititis senistive to products, finaly after 15 years, she is now 25 she knows what works for her and what doesn't. She still gets flare ups of unexplained acne on her body now and then. She is on regular allergy shots, some so severe that they knock her out or make her ill but other wise I have never seen her skin looking so good. She also had the scalp itching, she would rub her scalp untill it bled, it followed with all over body ithching. We have found out that once they put flouride in our water after a shower she would look like she had meazels, red all over.We moved to the coast where they don't have flouride in the water and her skin began to improve. There may me many things affecting your itching problems, lichen planus may be one but you realy should consult a Allergist if you haven't already done so.

[spokangie]

Im so sorry that you have to go through this, I know the feeling and mine is just a mild one comparing to what I am reading here. Did the Dr. say Planopilaris is causing this? Did they do a byopsy to rule it in or out. I had the tight feeling and itchy prickly feeling before I started to use Flouconimide solution, it is a liquid solution that you put on the affected areas. I just put it all over the top of my head and wherever I felt the tightness and pain, after a few days it slowly started to go away. I get the ithcy scalp now and then especialy if I have product in my hair, I just wash my hair and add some more.
Where is your Lichen Planus, mine is Oral.

[dustyk]

I never thought of seeing an allergist. I guess I always thought it was the LPP. When I took the pills for the LPP, it made me itch all the time. So, I suppose I just linked the 2. Thanks for the suggestion. I don't really get red spots anymore. When my LPP was really active in the beginning, I would scratch my head until it bled, too. I did have a lot of red spots then. Once in a while now, you can see red spots. But, its mainly just the itching now. I should contact an allergist. Thanks again.

[livingwith]

I was diagnosed with Oral Lichen Planus 5 years ago a byopsy was done to rule out mouth cancer. I have been using a steroid cream now for 5 years, it has not improved. A year ago I was told by a ENT that I just have to live with it and continue using another stronger steroid cream *clobetosol*. The cream tastes terrible and it makes my breath hot and smell like metal. The byopsy also showed that it was caused by NSAID drugs and amalgam fillings in my mouth. I had a back tooth removed as it was c...Read the full article

[dustyk]

Hi,

I was wondering if you are still around. I have lichen planopilaris and I am trying to find people that have the same thing. Mine is on my scalp and my hair is almost gone. Please let me know if you still check this site for replys.

Thanks,

Dusty

[luciebelle4]

Was diagnosed with Lichen Planus about 6 weeks ago and it is a horror. Started using topical creams which didn't help at all and now I am getting cortisone injections. My hair is absolutely awful -- you can see my scalp and even though this is not a "terminal" illness -- this illness is just terrible. The pain at times is unbearable and my doctor seemed to imply that it could take a very very very long time for it to get better and it may never go completely away.
Please let me hear from you