Author Topic: Pityriasis Lichenoides Chronica  (Read 549027 times)

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Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #940 on: Friday September 13, 2013, 09:01:50 PM »
Hello,
I've had PLC as long as I can remember (my parents even say when I was in diapers). I will be 17 in September, so as you can see, a very long time :( Now that I'm older ive been looking for ways to make it better, or make them subside, because I know there is no cure. My doctor misdiagnosed it as "eczema", and she gave me mometasone furoate cream(spell check) and said it should go away. It helped a little but not completely so I went to the dermatologist, where I got a biopsy and was then diagnosed. Nothing was done about it though  :-\

I was wondering what helps everyone the most. I hear sunlight works but they are on my buttocks & inner thighs only, so sunlight isn't really an option for me lol. Will a tanning bed work? Or are there and creams/oral medication that anyone would suggest? It's really hard to real with as a teenage girl, and I'm very self conscious about it.
Any ideas are greatly appreciated  :)

Creams and medications don't work. Find a stand up tanning booth. That works.

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #941 on: Friday September 13, 2013, 09:05:19 PM »
This doesn't seem to be a very active forum.  It may have to do with the rarity of the disease I imagine.  I've had PLC for three years.  I'm almost 58 now and it shows no signs of abating.  Since it's benign, doctors don't do the required research that would happen for other 'worthy' disorders.  I could definitely be a volunteer on this having consumed anything I can find on it.  My dermatologist hasn't even charged me for the last couple of visits (probably realizing it is futile)  Nevertheless, he has now put me on an intense course of prednisolone along with 50 mg of azathiaprine.  There obviously is no cure, and it's frustrating because I have never had anything I couldn't get rid of.

I have had it for 44 years. Standup tanning booths are the most practical solution. Drugs and creams DO NOT WORK. Don't waste your money.

Offline xweave

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Re: Pityriasis Lichenoides Chronica
« Reply #942 on: Monday September 16, 2013, 10:28:19 AM »
Have anyone tried bromelain ?

Offline elseaeff

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Re: Pityriasis Lichenoides Chronica
« Reply #943 on: Monday September 16, 2013, 01:54:23 PM »
Have anyone tried bromelain ?

I have tried it and it has done nothing for me. To each his/her own.

Offline Bespotted

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Re: Pityriasis Lichenoides Chronica
« Reply #944 on: Sunday November 03, 2013, 09:23:26 AM »
Hello, I'm new to this forum. I tried bromelain, and it seemed to help for several months, but my outbreak now is as bad as it ever was, though the increased severity seemed to coincide with a bad cold. Notice I say "seemed". It's so hard to know. I've had PLC for 4 years now--I'm 53, female. I convnced my doc to let me try Acyclovir, a pretty safe drug that is used to treat herpes virus. My thinking is that if the etiology is Epstein-Barr, which is in the herpes family, then Acyclovir might help. Too, I found a case study about a patient in Spain who had genital herpes, with PLC showing up at the same time. Acyclovir helped him with both conditions, but the PLC recurred when he stopped taking the drug.  Because of it's safe reputation, I'm willing to try it. Just started. I'll report back in a month.

Offline Bespotted

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Re: Pityriasis Lichenoides Chronica
« Reply #945 on: Monday November 04, 2013, 11:53:01 AM »
Would a tanning bed, as opposed to a booth, be just as effective?

Offline butterflykissesxoxo

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Re: Pityriasis Lichenoides Chronica
« Reply #946 on: Friday November 22, 2013, 02:37:23 AM »
I have been on doxy antibiotic, and the steroid as needed...for 1 1/2 yrs....I can't believe its that long....it  looks better but.....I have new spots alllllll the time...and they are everywhere...I can barely say its better because its obviously not...............I am thinking about quitting the antibiotic....and really need suggestions.....I want to start an exercise regime, eat healthy...even juice on some days....can someone suggest a cheap but great immune booater I can eat/take regularly.....and what kind of diet helped you. ...I also plan to get a membership at a tanning place. ....I'm very very sensetive to heat and sun and honestly it generallt makea it worse.... but once I get used to tanning I know it willhelp. .......I'm ao tires pf taking pills that give horrible side effects... can someone tell me what happened when they stopped taking the prescribed antibiotic for this. ...will it get worse.......suggestions........its still so bad and I am embarassed amd literally live in pants and long sleeve shirts..even in summer.......its depressing....I need some guidance
...

Offline elseaeff

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Re: Pityriasis Lichenoides Chronica
« Reply #947 on: Friday November 22, 2013, 08:48:49 AM »
I have been on doxy antibiotic, and the steroid as needed...for 1 1/2 yrs....I can't believe its that long....it  looks better but.....I have new spots alllllll the time...and they are everywhere...I can barely say its better because its obviously not...............I am thinking about quitting the antibiotic....and really need suggestions.....I want to start an exercise regime, eat healthy...even juice on some days....can someone suggest a cheap but great immune booater I can eat/take regularly.....and what kind of diet helped you. ...I also plan to get a membership at a tanning place. ....I'm very very sensetive to heat and sun and honestly it generallt makea it worse.... but once I get used to tanning I know it willhelp. .......I'm ao tires pf taking pills that give horrible side effects... can someone tell me what happened when they stopped taking the prescribed antibiotic for this. ...will it get worse.......suggestions........its still so bad and I am embarassed amd literally live in pants and long sleeve shirts..even in summer.......its depressing....I need some guidance
...
:D Welcome Butterfly Kisses!

My name is Linda and I have had PLC for at least 10 years or more now (after you get your routine set, the years no longer matter.) I really feel for the new people who are desperate and come looking for help and realize there are no medical personnel here, only those of us who have spent years and years searching as you have.

 >:( I get very angry with doctors who unnecessarily put us PLC'rs on antibiotics forever knowing full well it won't do a thing for it. Even worse, they will make you come into their office and charge you a full office visit to make you stand for a few seconds in their light boxes.

 ??? Now, after all of the doctor appointments and all of the antibiotics and light box times do you find yourself in any better shape than when you first started? Of course not. Because none of those things will help you. The antibiotics do nothing but give the doctors a good $kickback and the lightbox does the same. The oils they prescribe are too thick and keep the pores from breathing and I have found one cream that I like when I am breaking out, a prescription called Fluocinonide. Do not get the huge mongo size tube, I use a tiny tube that I've had since the last one went out of date. You use it sparingly. I will take my shower and while my legs and body are damp, I apply Fluco (my abbr) then coat my entire body with lavender baby oil GEL or shea butter. You can find either at your local pharmacy but I buy mine online. Do buy the shea butter whipped and again, use it sparingly. I use an extra step by adding the lavender baby oil gel. Notice the word gel after baby oil. It doesn't run and I call it my 'door' that keeps all the other moisturizers locked in - and I love the smell of lavender. It is very important to keep your skin as moisturized as possible - even if it means you strip a couple times a day to apply shea butter or whatever cream you choose to use. If you don't use shea butter, use a water based cream that is light and will seep into your skin. Oringins is one that is good, not with anything in it, but the original one.

When my doctor had me coming into the office 2x3 times a week to use the light box *at 45 miles x each way and a copay of $20 plus gas* it was getting old, really fast. As I was telling the girl who makes the appointments this she told me to talk to the nurse. You don't have to use their light box, you can get a membership at a tanning salon and my doctor said to use a booth, not a bed (who wants to stew in someone else's juices :P) but in a booth you are able to expose every bit of your body without doubt. Work your way up to 5 minutes a day. No more. Remember that tanning booths have stronger lights than beds do, so be careful. The worse thing I have ever experienced with PLC is a sunburn! :el:

The second thing to worry about is the ITCH! It will drive you crazy and make you do things you never dreamed you would do. I have found several things that will help you to satisfy the itch without tearing up your skin, which is easy to do if you haven't kept it moist as it should because it will become as thin as paper. During the day you can pretty well keep control of yourself and your itch. It is the night that causes trouble. You can wear a pair of those gloves used for bathing because they are textured but won't let you break the skin. Because you wake in the middle of the night with this itch, I have found that VICKS vaporub is the best thing for a quick end to the itch. I keep a jar handy and when I begin to apply it, I do so all over and it not only soothes the itch, it also helps your skin. I have problems with my septum so the menthol helps with my breathing. The third option is acrylic nails. Yes, a bonus to this terrible, incurable disease! The acrylic nails are too thick to break the skin, so scratch away! Of course there are other things. Peptic (the same used to calm you stomach) can help with the itch.

Bathe every other day or less if you can. The less you bathe, the less you dry out your skin - and the better it is for your hair. Every time you bathe you must start at the beginning with the fluc and every day try to put at least one layer of fluc on under the cream you choose to keep your skin moist.

I mix my own creams and oils, I love lavender oils and found that I can make them for much less than to buy them and can add things like peppermint and other carriers that help to thin the skin out and to lighten the dark spots.

The dark spots or bumps that you get when you have had a break out - awful, aren't they? I have found several things: you can allow your skin to dry out and use a fingernail file and file them down (you will usually find a hair under the bump) or when I'm not even thinking I can peel them off of my skin. I know if I can feel it to stop - it's not ready to peel, but otherwise i can peel them. But i thing it's better to file them down. Once you have filed them, they are virtually invisible! :clap: :clap:

There are many other things I've written here on this site that you can read and hopefully help you. Don't hesitate to contact me with any questions.

And my doctor? I see her twice a year, she's a doll! My husband has a very rare skin disease that took us to dozens of dermatologists and rheumatologists all over Richmond. It's very frightening when a seasoned doctor has to pull a book out to see if he can determine what you have. She took one look at him and knew exactly what he had, phemphegus.

Always check with your doctor before you take any supplements. There are many good ones that will boost your immune system. I also have Multiple Sclerosis and must suppress my immune system so I cannot help with that one. The closest I get to it is to take a multi vitamin. ;D

I figure any disorder that requires me to tan and have my nails done can't be all that bad! 8)

Good luck with the care of your PLC and hopefully a new start to a new and manageable life with PLC.

Offline elseaeff

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Re: Pityriasis Lichenoides Chronica
« Reply #948 on: Friday November 22, 2013, 08:54:50 AM »
:D Welcome Butterfly Kisses!

My name is Linda and I have had PLC for at least 10 years or more now (after you get your routine set, the years no longer matter.) I really feel for the new people who are desperate and come looking for help and realize there are no medical personnel here, only those of us who have spent years and years searching as you have.

 >:( I get very angry with doctors who unnecessarily put us PLC'rs on antibiotics forever knowing full well it won't do a thing for it. Even worse, they will make you come into their office and charge you a full office visit to make you stand for a few seconds in their light boxes.

 ??? Now, after all of the doctor appointments and all of the antibiotics and light box times do you find yourself in any better shape than when you first started? Of course not. Because none of those things will help you. The antibiotics do nothing but give the doctors a good $kickback and the lightbox does the same. The oils they prescribe are too thick and keep the pores from breathing and I have found one cream that I like when I am breaking out, a prescription called Fluocinonide. Do not get the huge mongo size tube, I use a tiny tube that I've had since the last one went out of date. You use it sparingly. I will take my shower and while my legs and body are damp, I apply Fluco (my abbr) then coat my entire body with lavender baby oil GEL or shea butter. You can find either at your local pharmacy but I buy mine online. Do buy the shea butter whipped and again, use it sparingly. I use an extra step by adding the lavender baby oil gel. Notice the word gel after baby oil. It doesn't run and I call it my 'door' that keeps all the other moisturizers locked in - and I love the smell of lavender. It is very important to keep your skin as moisturized as possible - even if it means you strip a couple times a day to apply shea butter or whatever cream you choose to use. If you don't use shea butter, use a water based cream that is light and will seep into your skin. Oringins is one that is good, not with anything in it, but the original one.

When my doctor had me coming into the office 2x3 times a week to use the light box *at 45 miles x each way and a copay of $20 plus gas* it was getting old, really fast. As I was telling the girl who makes the appointments this she told me to talk to the nurse. You don't have to use their light box, you can get a membership at a tanning salon and my doctor said to use a booth, not a bed (who wants to stew in someone else's juices :P) but in a booth you are able to expose every bit of your body without doubt. Work your way up to 5 minutes a day. No more. Remember that tanning booths have stronger lights than beds do, so be careful. The worse thing I have ever experienced with PLC is a sunburn! :el:

The second thing to worry about is the ITCH! It will drive you crazy and make you do things you never dreamed you would do. I have found several things that will help you to satisfy the itch without tearing up your skin, which is easy to do if you haven't kept it moist as it should because it will become as thin as paper. During the day you can pretty well keep control of yourself and your itch. It is the night that causes trouble. You can wear a pair of those gloves used for bathing because they are textured but won't let you break the skin. Because you wake in the middle of the night with this itch, I have found that VICKS vaporub is the best thing for a quick end to the itch. I keep a jar handy and when I begin to apply it, I do so all over and it not only soothes the itch, it also helps your skin. I have problems with my septum so the menthol helps with my breathing. The third option is acrylic nails. Yes, a bonus to this terrible, incurable disease! The acrylic nails are too thick to break the skin, so scratch away! Of course there are other things. Peptic (the same used to calm you stomach) can help with the itch.

Bathe every other day or less if you can. The less you bathe, the less you dry out your skin - and the better it is for your hair. Every time you bathe you must start at the beginning with the fluc and every day try to put at least one layer of fluc on under the cream you choose to keep your skin moist.

I mix my own creams and oils, I love lavender oils and found that I can make them for much less than to buy them and can add things like peppermint and other carriers that help to thin the skin out and to lighten the dark spots.

The dark spots or bumps that you get when you have had a break out - awful, aren't they? I have found several things: you can allow your skin to dry out and use a fingernail file and file them down (you will usually find a hair under the bump) or when I'm not even thinking I can peel them off of my skin. I know if I can feel it to stop - it's not ready to peel, but otherwise i can peel them. But i thing it's better to file them down. Once you have filed them, they are virtually invisible! :clap: :clap:

There are many other things I've written here on this site that you can read and hopefully help you. Don't hesitate to contact me with any questions.

And my doctor? I see her twice a year, she's a doll! My husband has a very rare skin disease that took us to dozens of dermatologists and rheumatologists all over Richmond. It's very frightening when a seasoned doctor has to pull a book out to see if he can determine what you have. She took one look at him and knew exactly what he had, phemphegus.

Always check with your doctor before you take any supplements. There are many good ones that will boost your immune system. I also have Multiple Sclerosis and must suppress my immune system so I cannot help with that one. The closest I get to it is to take a multi vitamin. ;D

I figure any disorder that requires me to tan and have my nails done can't be all that bad! 8)

Good luck with the care of your PLC and hopefully a new start to a new and manageable life with PLC.

Offline SebrinaPnp

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Re: Pityriasis Lichenoides Chronica
« Reply #949 on: Thursday January 09, 2014, 09:25:28 PM »
Hi everyone.  I was just diagnosed with Mucha Habermann 2 days ago.  Luckily it only took a week and a half and 4 doctors to get to the bottom of it.  Currently on Erythromycin 2x/day and the light therapy 9x. 

Looks like I've got 48 pages of reading to catch up on here!!!

Offline lfn

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Re: Pityriasis Lichenoides Chronica
« Reply #950 on: Friday January 10, 2014, 08:08:55 AM »
Has anyone tried the Neosporin cream? Does it work? The reviews are very positive for at least people with eczyma.

Offline SebrinaPnp

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Re: Pityriasis Lichenoides Chronica
« Reply #951 on: Tuesday January 14, 2014, 03:15:00 PM »
Has anyone ever experienced vision problems linked to PLC? 

Offline jadebianca

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Re: Pityriasis Lichenoides Chronica
« Reply #952 on: Wednesday February 26, 2014, 11:57:34 AM »
Hi!  My daughter was diagnosed with PLC (chronic version of PLEVA) five years ago.  They told me that it would take several years to run its course, and typically resolves by 7-10 years old, or perhaps into early puberty. (She is seven).  They said that childhood PLC is a little more predictable than adult PLC, because with adult PLC, it is a little harder to tell when it typically resolves.  Something physically happens with children leading up to puberty that causes them to outgrow these conditions (supposidly). 

I have never talked to anyone with PLC, and would be interested in hearing from anyone who has had any experience with this disorder. 

My daughters rash is mainly on her body, and sometimes it crops up around her mouth area.  Not to conspicuous, but it does sometimes flare up and become more obvious, partcularly if she uses certain fragrance soaps, fragrance creams, etc...her skin is definitely sensitive. 

Hope to hear from someone with PLC experiences!

Jahan

i have had mine since i was 12 and was finially sent to dernatology at 24 im now 25 using light therapy for 6 month has cleared it up x3 a week i am still using it mine burn rather than itch and feel like a stabbing pain i find mine only flare up when i am stressed run down or ill. i know their is injections for this but at such a young age i would ask for light therapy as often as you can,

Offline RimaKurt

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Re: Pityriasis Lichenoides Chronica
« Reply #953 on: Tuesday April 08, 2014, 05:51:52 AM »
Hi everyone i feel sorry for all of us PLC sufferer mine i had it for 8 months it really broke my heart as i have it on my face, neck down to my body. I recently had my check up hoping my derm will give me advice for managing my PLC but still she prescribed me anti biotics and lotions to put on my poor skin. It really bothers me as my job requires you to look nice especially when facing clients i'm planning to resign in my current work. I don't want to loose my job but every time i see my skin in terrifies me. I considered it as a course at this disease is chronic. Please help me and shed some lights for me.  :'(

Offline MiaV

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Re: Pityriasis Lichenoides Chronica
« Reply #954 on: Tuesday June 03, 2014, 06:55:20 PM »
Hi!

A month ago I had the common flu and I noticed rash on my chest. My dermatologist suspected it was pityriasis lichenoides chronica (PLC) so I did a biopsy. The results stated that the diagnosis wasn't specific but it looked like PLC.

I don't feel itchy and the papules are constantly peeling off. The first ones that appeared are about 1cm in diameter and they are quite red, but the new ones (on legs and back) are smaller and not red at all.

So I figured that this is not the classic type of PLC, but I don't really know what it is.
I don't have intention on taking pills or steroid creams, but I want to try with boosting my immune system with spirulina and silver (colloidal) water.

I was wondering if anyone had tried spirulina or silver water and had any effects?
Also I would like to know if the rashes at some point completely fade away in your cases and then they come back, or if you constantly have the rash but it varies in density at different periods of time?

I hope my English is understandable since it is not my native language.
Hope you have a great day everybody and thanks in advance for your reply :)

Offline Aquababe241

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Re: Pityriasis Lichenoides Chronica
« Reply #955 on: Friday July 04, 2014, 02:19:26 AM »
Hi there, I must admit the medical profession is coming up with real fancy names for skin issues which they have no real clue how to heal....

I personally healed head to toe dry faking bleeding eczema from head to toe by cutting out processed food out of my diet, colon cleansing and doing vegetable juicing eg, carrots,green apples and parsley,
Steamed oily fish like mackerel, salmon or sardines, fermented goats milk kefir which always tones my skin fast and sorts out pigmentation.

I also eat plenty of avocados in veggie smoothies or guacamole with sprouted mung beans, lentils or alfalfa.

I also eat nigerian food like ewa (Nigerian honey beans) or iyan (homemade pounded yam - not sweet potato).

Chlorella and spirulina are good but expensive.

Amaroli works within days on a healthy clean diet.  I have just recovered from6 weeks  of persistent sunburn peel on my face and neck even though I am a chocolate person.

Amaroli stopped the peel overnight and I am still in pleasant shock from the fast rate of skin healing.

The skin on my arms and legs is returning to its normal skin colour within 5 days of Amaroli on a clean diet.

I did my research on Amaroli by such advocates as Martha Christy, Dr John Armstrong, Sylvia Chandler and also youtube videos from the Hindu community.

Morarji Desai lived to 99 years, and revealed the secret to his toned, wrinkle free complexion as being Amaroli.

So, basically, as I was so desperate to get relief, that is what I did and it is so nice to type this in the middle of the night without a single itch or flaky face bothering me....

Hope this helps someone,

Take care, Aqua
It's really nice to be free, free to be me
I'd rather be free and happy
Than nobody and sad

Offline MiaV

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PLC update and my cure
« Reply #956 on: Sunday July 06, 2014, 12:39:57 PM »
Hello everybody,

I think a might have found MY cure.

About a month ago i did a post about having PLC. I decided that I wasn't going to take antibiotics or any kind of ointments and that instead I was going to go for something more natural.

So, after talking to many people and browsing the internet I decided to try drinking ginger tea. I started using it on July 10th. During the first two weeks I stopped getting new papules, which was GREAT. Also the existing ones stopped looking so "angry".

Yesterday I came back from a 7 day beach holiday and I can say that after a month of drinking ginger tea and 7 day exposure to sun (8-10am and 5-7pm) I went from having around 60 papules (at the moment of starting ginger tea) on my body, to having only 7 right now and those 7 are barely recognizable.

This is what I do: I take one teaspoon of powdery ginger and mix it with 300ml of water (you can put more water if the taste of ginger is too strong for you. It doesn't matter how much water you sip because you are just changing the taste, not the amount of ginger you take.) Then you wait for the tea to boil and that's it. I drink the tea little by little, during the whole day.

Please note that I am not saying that this is the cure for PLC, I am just saying that it helped me.
I really recommend to everyone with PLC to try drinking ginger tea daily, because even if it doesn't work for you, you have nothing to lose, it's all natural and at bottom line ginger is healthy whether you suffer from plc or not.

Good luck everybody

Offline elseaeff

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Re: Pityriasis Lichenoides Chronica
« Reply #957 on: Monday July 07, 2014, 12:04:05 AM »
One of the best tools to fight PLC is sunshine and saltwater! Congrats! You started your program in the right way!

Offline TLCforPLC

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Re: Pityriasis Lichenoides Chronica
« Reply #958 on: Sunday August 10, 2014, 02:45:33 PM »
Hi! I have just stumbled across this forum and can't believe I never knew about it!

I would love to have advice on how people with brown phenotypes can get some of our PLC scars to fade. Does anyone have any natural or simple remedies that help blend the discolorations? It seems that most of the suggestions on this forum have been about trying to make their spots/scars lighten; in my case, I'd like them to darken and even out.

I'm 23 years old and I have had PLC for 4 years now. It was diagnosed just over 3 years ago via biopsy. I tried methotrexate for a while and it cleared up new spots but made me nauseous, I tried light treatment and it didn't seem to make a difference. At the time I was diagnosed, I also noticed that once the red spots would scale off and darken, they often left large, discolored, hypo-pigmented spots in their wake as scars. My dermatologist and I both thought it was from topical steroids, but this spotting has persisted long after I quit using that stuff. After a lot of trial and error, I am back on a low dose of methotrexate and hardly ever have new outbreaks. However, I seem to be getting more and more of the faded hypo pigmentation that is both truncal and on my limbs. And so far, these larger spots have not really gone away. In my case, laying out in the sun makes the discolored spots lighter, and therefor much more obvious compared to my dark skin.

Thanks!

Offline kanani

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Re: Pityriasis Lichenoides Chronica
« Reply #959 on: Wednesday September 10, 2014, 08:56:19 AM »
Hi, TLCforPLC,

My daughter was diagnosed with PLC when she was barely 3 (I think I first posted back on p. 44).  She's now almost 7, and this disease is more of a mystery to me than ever.  We've pretty much given up on medications and just use a lot of Cerave cream.  Your post struck home with me because we're brownish, too, and although my daughter's PLC "outbreaks" seem fewer and don't bother her as much, she has a lot of large areas of whitish skin, especially on her legs, which are very visible.  Her doctor said that the white spots are (as you thought) hypopigmentation.  She said that the only thing to do is to consistently wear sunscreen and hope that with time the uneven color will fade.  She said that with too much sun exposure, the skin loses its elasticity, including its ability to revert to its normal pigment, and the white spots will become permanent, so sunscreen is key.  Good luck.