Author Topic: Pityriasis Lichenoides Chronica  (Read 553348 times)

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Offline spotty spot

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PLEVA
« Reply #200 on: Wednesday November 01, 2006, 09:25:58 AM »
Hi! 

I can't say how happy I am to find you all! I am a 22 year old who has had PLEVA since January '06. I have classic PLEVA with intense flu like symptoms, fatigue, swollen lymph nodes, crops of red raised then ulcerated lesions which scar. I've had crops all over my body and face.

More importantly, I am a happy person with a great life! I had originally not sought a support network such as this as I didn't want PLEVA to be in anyway my identity. I am also a medical student and thus I have been doing as much reading on PLEVA as I can. I have only now turned to trying to find people to talk to about this as I am getting sick of PLEVA being around. I have had little support from my friends and family as they don't see how much it affects me. The worst part is the fatigue and the flu symptoms, well actually the worst part is the spots and the scars on my arms and my face. Although i don't like to admit it, the asthetics of it do worry me.

I am thankful that the first Dermatologist I went to had experience in PLEVA. I am also grateful for having a leading skin pathologist in my city how knows his stuff when it comes to PLEVA, and happens to be one of my university lecturers. That said, it took 6 months to find these guys. In that time there was a miriad of GP and other doctor related tests. They even quarantened me from going outside for 7 days at one point! My case was convoluted a little (as i'm sure everyone's is) by the fact that I've travelled and work in many developing countries and the first spots arrived with a 5 week intense viral conjuntivitis and pharyngitis. So i've been tested for every infectious disease under the sun along the way!

In terms of treatment:
I have been on high dose Erythromyocin since June '06. It has results - Instead of having huge intense crops of spots spontaneously appearing in different regions (I counted 60 new ones in a 15 min once) I now just a few. And the flu like symptoms of tiredness have definately decreased. It was quite dramatic when I stopped taking the ES for a few days and i ended up in bed sleeping for 25 hours straight. 
I also have topical steroids for new spots that come up and topical antibiotics for open spots to prevent infection.
There has been talk of light therapy but I have fair skin so I don't want it.

In terms of scaring, ofcourse they are there and they are very visible. I was using Vit E but my pathologist told me to discontinue this as I was having a hypersensitivity response to it. So I now find prevention the best treatment for the scars - not to allow new spots to loose their top or lesions to become ulcerated. Steroids, not scratching and generally being careful is my only measures for this.

I would like to talk with anyone about anything related to PLEVA or PLC. I would like to learn from your experiences and help others with mine where able.

Ah there you go. Enough of this long message! Too long infact!

Be the change you wish to see in this world - Ghandi

Offline spotty spot

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Re: Pityriasis Lichenoides Chronica
« Reply #201 on: Wednesday November 01, 2006, 09:49:46 AM »
Diana - I think you should get a second opinion. Oral steroids in children should be limited and only used as a last resort. If you are in a place where you can access other dermatologists then a second medical opinion would probably do your son good. All the best.

Be the change you wish to see in this world - Ghandi

Offline spotty spot

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Re: Pityriasis Lichenoides Chronica
« Reply #202 on: Wednesday November 01, 2006, 09:57:06 AM »
informative and cohesive resource on both PLC and PLEVA -
http://www.emedicine.com/derm/topic334.htm

sorry i've posted so much in one go. i am just so happy to find you all!
Be the change you wish to see in this world - Ghandi

Offline EX-itchell

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Re: Pityriasis Lichenoides Chronica
« Reply #203 on: Wednesday November 01, 2006, 01:05:50 PM »
Hi Spotty spot and welcome to Skincell!!

I've had plc and am in remission (who can say that it won't come back).  The rules to help you I would give as follows:

1. Stay cool! I love exercise, but during the time I was getting new spots I couldn't do any exercise that would make me sweat as it encouraged more spots and the worst is spots on your chest......

2.  Use an ice pack to cool you down at night, because heat makes you itchier, which makes you scratch, which worsens the spots...

3.  Wear pure cotton only.  I tried every material and only cotton lets the skin breathe to keep you cool...

4.  No baths and shower as little as you can.  Shower should be luke warm.

5.  Watch your food.  For me I couldn't eat a big meal in the evening, as I'd be too hot at night.  I ate light in the early evening and was better for it.

6.  Red meat and shell fish are too heavy and heat you up.  Take care when you eat these.

I used a cream by Vaseline called Intensive Care Dermacare and liked that with occasional Eucerin (10%).  Morning and night I covered my body in pure sesame oil, but lots of people here swear by pure coconut oil.  I found oil nicer to use than things like aquaeous cream and it went in, without disappearing.

The asthetics of the disease are horrid, and the constant desire to itch removes you from the people you're with as you struggle mentally with it.  Even beloved family can't understand why it seems so bad to you, but anyone on this site WILL UNDERSTAND!!!!

The scars have now left me, except two, which are on their way.  I have got through tons of useless cream, and bottles of oil which I still use to keep my body moisturised.  I believe mine started due to stress and a virus combining, and I had to get both of those out of my body.

I might also recommend some exercise like yoga if you can cope with regular clothes.  It might make you feel better mentally.

Email me for anything else you want.

Take care, and think of us as your spot-relations. :hugs:

EX-itchell
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Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #204 on: Wednesday November 01, 2006, 08:09:13 PM »
Hey spotty,

I had PLC, and had spots last year but since then they've gone and only 1 or 2 faded scars remain now. Just before my spots started fading, I was on tetracycline which was very effective. I'm glad you found someone that specialises in PLEVA, my dermatologist put me on the light treatment, but that didn't seem to work, just seemed to give me a few more moles so I wouldn't try it. Also he said to have cold showers, so every morning I had a pretty cold shower which helped keep the spots from flaring.

What do you think caused the outbreak in you? and where did it start. (i dont know if PLEVA is much different to PLC)...

Offline leenasmom

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Re: Pityriasis Lichenoides Chronica
« Reply #205 on: Thursday November 02, 2006, 09:20:07 PM »
Similar experience with my daughter diagnosed with PLEVA in August, 06. We went the route with dermatologists briefly and they prescribed expensive topical steroids which only darkened her spots. I then opted for a nutritionist who had her perform a 24 hour urine draw which was submitted for analysis. We immediately pulled her off dairy products and her rash has all but disappeared. She was completely covered (trunk, legs, arms and a few on her neck and face) but is clearly up nicely. I am paying strict attention to diet and also trying to wean her off sugar as much as possible. I am thrilled at the initial results but tentative as I hear this is often a recurring condition.

The are suspecting that her pituitary gland has been malfunctioning (sending the wrong internal message to other hormones) due to the onslaught of all of the growth hormones put in our milk . . . it is criminal!! Your doctor's tell you to drink more milk for the calcium, but our commercial dairy products are chuck full of pollution!

Offline spotty spot

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Re: Pityriasis Lichenoides Chronica
« Reply #206 on: Thursday November 02, 2006, 10:46:12 PM »
Wow this is so exciting! you guys really are all here! i've never used an online forum before but this is awesome!!!!!

Ex-itchell, thankyou for all your tips and ideas. They are much appreciated. I haven't heard this idea of heat. I will investigate ways that i can incorporate cooling down into my life. Not exercising is a bit of an impossibility for me! And I live in a very hot climate (australia). But I'm sure there are ways around it - diet and cold showers sound good.

I don't actually get that itchy. So I really don't put any ointments on my skin as it just makes clothes and bed sheets so greasy. Have you found ways around this?

PLC4ME, It is so exciting that your scars have faded! That is just fantastic! I'm not sure what started mine. When I started getting spots I was really relaxed. I was on holidays and at the beach with my sister for a month. But I only got a few then. The major crops started coming about a month after that. At that time I was very very sick for about a month. so i don't know really, proabably a virus triggered it... But PLEVA is a hypersenstivity reaction - that basically means that my white blood cells have lost their ability to recognise that my skin is me (not a bug), so they attack my skin thinking it is a bug - a.k.a. autoimmune. So my problem now is to get my immune system to CHILL OUT and stop attacking me!

As for PLEVA v PLC. It is my understanding that PLEVA and PLC are not the same disease but they are the same spectrum of disease. Like a colour chart of Red (PLEVA) to Yellow (PLC) with gradients of orange between them. My doctor thinks that I am somewhere in the middle of that spectrum, that is, I am a reddy orange! Does that even make sense?!?! anyway, they are very similar mechanism underlying them with different appearances.
 
Leemasmom, am so very happy that you came across someone who could help your daughter. She is so blessed to have you as her mum who cares about her and is obviously involved in her health. Go good mums! I am very intrigued about this dairy product situation. I will definately look into this, I have a pretty healthy diet. But i do love dairy - maybe i'll give it a try.
How old is your daughter?  A short burst of activity is normal in kids with PLEVA. most common duration of the illness is 10-11months supposedly. So I'm not surprised things cleared up. However, with adults the course is usually much longer, anything up to decades. But that's not to say it's not the same mechanism. So thankyou very much for your tips. i will definately think about it.

I encourage you all to keep on keeping on in your lives as well as with whatever ailments you have in your bodies!
"Being human is a tough gig, give that old soul of yours a hug!" - Paraphrase of Niche by Kris on Northern Exposure
Be the change you wish to see in this world - Ghandi

Offline spotty spot

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Re: Pityriasis Lichenoides Chronica
« Reply #207 on: Thursday November 02, 2006, 10:50:41 PM »
Princess Laura, I want to encourage you for being such a strong and couragious person! keep on being wonderful! I am sure your PLC will settle in time. But while it is here, you are so much more than some spots on your skin and hassles of a medical condition! You are a worth while beautiful person!  :)
Be the change you wish to see in this world - Ghandi

Offline Angela7

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Re: Pityriasis Lichenoides Chronica
« Reply #208 on: Thursday November 16, 2006, 02:58:58 PM »
Hello fellow Pleva moms & sufferers.  I haven't checked in in a while but always love the wonderful advice and support that we can all get from each other.  My 7 year old son has had Pleva for 5 years now.  He is pretty spot free right now perhaps still the carry over from a lot of sun this past summer.  Last year he also had a pretty good winter.  When they say most kids outgrow it most agree that it seems to kind of peeter out over time.  Maybe the slow burn out has begun after so many years??  At this point we do nothing to treat him.  Just as much safe sun as he can get in the summer and one year we went to Florida for Spring break when he was absolutely covered.  It has always been in our lives so we are all very used to it and he rarely comments on it except to say "I have a lot of spots right now" or vice versa.  Over time I have learned that the less I obsess about it the better for him (although that can be mighty tough when he is covered).

I was reading adults talk about Tetracycline but just wanted to let parents know that Tetracycline is NOT recommneded for young kids, as it causes permanant teeth to be stained when they come in.   

Take care everyone and good luck, Angela

Offline jen1

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Re: Pityriasis Lichenoides Chronica
« Reply #209 on: Sunday December 03, 2006, 10:12:50 PM »
 ;D Hi, sorry but I have not logged on for ages, been sooo busy with new baby and toddler!!!. Last time I  said that I was getting light therapy. As mentioned before, I got PLC at the start of my second trimester of pregnancy which was october last year. I went to the Dermatologist and they did not
give me any answers, were very matter of fact in that the condition usually lasts about a year or so and it was not pregnancy related and cause is unknown. Anyway, to cut a long story short, the spots were itchy to start with, were around my chest and gradually spread all over my body. Just as I thought they were clearing, they would attack another part of me! Last summer was dreadful, I was so upset. I went to the dermatologist expecting to be referred for light treatment and was told that they did not recommend it justyet! They did not want to increase any risks later in life of getting skin cancer and when I thought about it...I agreed ...nor did I! I asked them "in their experience what did they think the best thing was to do"..I was not keen on taking any drugs...I just wanted to get my body back to normal after having a baby! I was told "do nothing" that would be the best thing and they were sure that it was clear up. He did moan at me for wearing jeans and trainers in the summer. My legs at the time looked horrendous, bright red spots covered them and I could not even shave them, spotty and hairy! There was no way I was going to wear a skirt to allow air to get to them. I was even paranoid of sitting in my garden..... I just felt sooo bad. Anyway, that was my low stage and after that I just carried on and blanked it all out really. I didnt take anything, go for light therapy or even put moisturising cream on. The funny thing is about six weeks ago I noticed the spots just disappeared!!!! Ive got the odd mark of an old spot and thats it.  It feels really weird writing this...I still cant really believe it.  My baby boy is now six months old and its been exactly a year since I got PLC. The only place I didnt get the spots was my face though I did get some around the eye. Now nothing! Anyway, I thought I must come on and give others hope as it does get a bit depressing when some people have had it for years. They always said they didnt know the cause and Im wondering now if thats because the cause is different for everyone. For me, I personally think it was hormonal, something was triggered by the pregnancy but hey thats just my own personal opionion! I really do hope and think that the little ones who have it will be plc free at puberty! Funny but my derm was right, he said around a year on my first visit. Ive really gone on now...sorry! Good luck to u all and I will let you know if it comes back.  ;D

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #210 on: Sunday December 03, 2006, 10:32:13 PM »
;D Hi, sorry but I have not logged on for ages, been sooo busy with new baby and toddler!!!. Last time I  said that I was getting light therapy. As mentioned before, I got PLC at the start of my second trimester of pregnancy which was october last year. I went to the Dermatologist and they did not
give me any answers, were very matter of fact in that the condition usually lasts about a year or so and it was not pregnancy related and cause is unknown. Anyway, to cut a long story short, the spots were itchy to start with, were around my chest and gradually spread all over my body. Just as I thought they were clearing, they would attack another part of me! Last summer was dreadful, I was so upset. I went to the dermatologist expecting to be referred for light treatment and was told that they did not recommend it justyet! They did not want to increase any risks later in life of getting skin cancer and when I thought about it...I agreed ...nor did I! I asked them "in their experience what did they think the best thing was to do"..I was not keen on taking any drugs...I just wanted to get my body back to normal after having a baby! I was told "do nothing" that would be the best thing and they were sure that it was clear up. He did moan at me for wearing jeans and trainers in the summer. My legs at the time looked horrendous, bright red spots covered them and I could not even shave them, spotty and hairy! There was no way I was going to wear a skirt to allow air to get to them. I was even paranoid of sitting in my garden..... I just felt sooo bad. Anyway, that was my low stage and after that I just carried on and blanked it all out really. I didnt take anything, go for light therapy or even put moisturising cream on. The funny thing is about six weeks ago I noticed the spots just disappeared!!!! Ive got the odd mark of an old spot and thats it.  It feels really weird writing this...I still cant really believe it.  My baby boy is now six months old and its been exactly a year since I got PLC. The only place I didnt get the spots was my face though I did get some around the eye. Now nothing! Anyway, I thought I must come on and give others hope as it does get a bit depressing when some people have had it for years. They always said they didnt know the cause and Im wondering now if thats because the cause is different for everyone. For me, I personally think it was hormonal, something was triggered by the pregnancy but hey thats just my own personal opionion! I really do hope and think that the little ones who have it will be plc free at puberty! Funny but my derm was right, he said around a year on my first visit. Ive really gone on now...sorry! Good luck to u all and I will let you know if it comes back.  ;D

I know how you feel. I would wear long pants and long sleeved shirts in the summer and everyone would come up and ask if I was hot but I'd act it out and just say I'm fine. Even though I'm sweating from every gland in my body. I also didn't get any on my face, a few were flaring up on my neck, and when those on my neck started to disappear so did the rest. I think it was from the tetracycline but maybe it might have just had it's time and went like yours did. I'm glad yours has cleared up and the weird thing is, the spots that are still left over, I went to a different dermatologist and he looks at them and says they're moles. :S I also have a scar thing which he doesn't know what it is.

Regards,
PLC4ME

Offline mlucaj

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Re: Pityriasis Lichenoides Chronica
« Reply #211 on: Friday December 08, 2006, 03:31:10 PM »
Hi everyone.  I was diagnosed with pleva a couple weeks ago.  I am a male 32 years old.  I first noticed a few small bumps on the insides of my arms about 4-6 weeks ago.  My dermatologist gave me a bunch of drugs and steroid creams to "try" and if they didnt do much he said he would prescribe others.   I wasn't happy with his answers so thats how I found this group and why I chose to seek "alternative" treatment.
In the meantime I went to a couple of homeopathic doctors and I was told I have a slow or toxic liver.  Their explanation was there are 3 ways to get rid of toxins in your body (2 of them involving the bathroom) and the 3rd is through your skin.  When the body can't process the toxins fast enough for whatever reason, they get into the blood and in many cases come out through the skin.
I got off the tetracycline and the topical steroids and am doing a liver detox and will be detoxing the rest of my body kind of like  EX-ITCHELL did.  I will keep everyone posted on whether this works for me
Good luck to you all

Offline ddan

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Re: Pityriasis Lichenoides Chronica
« Reply #212 on: Sunday December 10, 2006, 06:31:42 PM »
i was diagnosed with plc when i was 20. i am now 26. does anyone know if theres a way to get rid of those light faded spots? i've been lucky to not have any severe problems. i get a spot here,,, a spot there,,, very rarely do i get a lot in one area. but i've accumulated a lot of these faded spots everywhere, mostly on my thighs and stomach, trunk, and it's kind of annoying. i almost never itch, except occasionally on my back, but the itching is underneath the skin. i have so many acne scars on my back that its hard to tell the difference between the acne and what may be plc. i've heard people say that sunlight helps get rid of the plc, which sounded weird to me, because i was a homeless street person when i first got plc. i was in the sunlight 24/7, and never bathed or even showered.

Offline dianaturin

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Re: Pityriasis Lichenoides Chronica
« Reply #213 on: Tuesday December 12, 2006, 09:50:19 PM »
Hi,
Please let us know what works. I am 40 and was diagnosed about 3 months ago. It seems we are left on our own to figure out how to deal with this. I was also thinking about doing a detox. Not sure how to go about it. If you have any suggestions that would be great. I have them all over my body, including my face and neck.
Thanks
Diana

Offline dianaturin

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Re: Pityriasis Lichenoides Chronica
« Reply #214 on: Tuesday December 12, 2006, 09:57:04 PM »
Greetings Again!  :hi:

Thank you for your words of encouragement, Jahanara. I am located just south of Richmond, so I do get plenty of sun here -- I should say plenty of bearable sun here. There's been a nasty cold front lingering just to the west of us, sliding east and west, just enough to bring storms and sun hour by hour. I suppose it's OK since I burned myself yesterday and need some time before going out and doing it again! I'm a firm believer in the power of the sunlight and it's control over PLC. This time last year I was a mess, covered with oozing pustules that were literally driving me crazy! After spending three months with my primary care doctor who didn't know what do do, I was finally able to get into a dermatologist who diagnosed me instantly and had me on the road to wellness. I can't tell you what a nightmare it was to be covered with PLC and have no means of relief from the itch and sores. I had staff infections several times during the months before I finally had the 'disorder' under control.

The dermatologist gave me creams to help with the itch, which only made them worse because they were too heavy and robbed the skin of air. I've learned that only water-based creams work on PLC skin now. Finally, she had me use her 'Narrow-band UVB light box' 5 days a week, $20 a day and a round trip drive of 90 miles. As the cost of gas kept increasing, the cost of her treatments continued to get more and more expensive. Her nurse told me to ask her about a tanning booth. I did and she approved it (but not a tanning bed where you lay in someone elses's 'juices') so now I spend $25 a month and use a tanning booth for as long and often as I want, getting the same results as I was in her expensive booth. I still see my dermatologist 4 times a year, so I haven't given up with the experts.

During my 6 months of agony before the PLC was under control, I discovered there were certain types of creams and oils, cleaning 'rituals' and clothing that worked best for my condition. I'd be most happy to share them with you if you'd like to privately message me.

Knowing the pain and discomfort, public shame, and personal dismay I endured with my bouts of PLC, I can only say that my heart goes out to those children who have to endure the same. I'm sure you saw my earlier post when I 'spouted' to those who are waiting for puberty to cure their children's malady. I first encountered PLC at the age of 49. There are many different disorders that stump doctors and leave them with no choice but to attribute them to childhood and mark puberty as the turning point of the disorder's change. We have learned that is no longer the case.

Sunlight can be dangerous if not monitored, but in cases such as ours -- us with PLC -- it can be a blessing. You can use sunscreen and you can still monitor the time of sun that is received. But, look at your child and ask which is worse? As someone who suffers from the awful effects of PLC, I can tell you that a small bit of sun each day (my doctor told my that 5 minutes a day is all it takes) is more than worth the pain and suffering from PLC.

Have a blessed day!

elseaeff

Offline mlucaj

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Re: Pityriasis Lichenoides Chronica
« Reply #215 on: Monday January 08, 2007, 09:57:09 PM »
Hello again everyone, just wanted to give an update on my pleva.   I was diagnosed in November and decided to go the natural route since my dermatologist could not tell me much about this.  I went to a naturopath and was told I have a slow liver so she told me what I should do. I did a 1 day liver cleanse, took some vitamins and milk thistle (helps with various liver problems) and also did something called jmt technique (recommended by a friend)which is supposed to clean your body on a cellular level (this still seems real hokey pokey but hey I was desperate) and went to a tanning booth 3 times for 5 minutes each time
Well, the hundreds of red bumps I had all over are GONE.  I dont know which one of the above 3 things I did worked, or even if they went away on their own but I know the dermatologist didnt work.  He wanted me to take anti biotics for 3 months and apply a steroid cream all over in hopes that it would help but I didn not do it.  I would recommend to anyone on here to check into natural healing for this skin disorder, it won't hurt.

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #216 on: Friday January 12, 2007, 07:01:00 AM »
Hello again everyone, just wanted to give an update on my pleva.   I was diagnosed in November and decided to go the natural route since my dermatologist could not tell me much about this.  I went to a naturopath and was told I have a slow liver so she told me what I should do. I did a 1 day liver cleanse, took some vitamins and milk thistle (helps with various liver problems) and also did something called jmt technique (recommended by a friend)which is supposed to clean your body on a cellular level (this still seems real hokey pokey but hey I was desperate) and went to a tanning booth 3 times for 5 minutes each time
Well, the hundreds of red bumps I had all over are GONE.  I dont know which one of the above 3 things I did worked, or even if they went away on their own but I know the dermatologist didnt work.  He wanted me to take anti biotics for 3 months and apply a steroid cream all over in hopes that it would help but I didn not do it.  I would recommend to anyone on here to check into natural healing for this skin disorder, it won't hurt.

That's such great news! I'm so happy for you. Maybe this would work for PLC aswell. Are Pleva and PLC similar? I hope your skin stays clear. Keep us updated.

Thanks,
PLC4ME

Offline EX-itchell

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Re: Pityriasis Lichenoides Chronica
« Reply #217 on: Wednesday January 17, 2007, 01:20:10 PM »
Hi all,

Just an update on plc.

Since the New Year when I drank lots of great wine, and ate really well, I've started to get that itchy feeling......

So I'm on a detox, cutting out alcohol and meat again.  The itching is retreating, but this is just a warning, that even when you THINK you're ok.....

Good luck to all those struggling with the spots.  Just one thought about fading spots.  What I DID do to get rid of mine, was to massage myself vigorously on all the areas which were covered on a daily basis, using sesame oil.  I wonder if that might have helped?

EX-itchell
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Offline Loveysmommy

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Re: Pityriasis Lichenoides Chronica
« Reply #218 on: Sunday January 21, 2007, 03:37:57 PM »
Hello everyone,

My daughter has not been officially diagnosed yet, as I only just learned about PLEVA a few weeks ago.  My daughter, who is now 10, has had these "mysterious" recurring red spots since she was 3 yrs. old.  We've been to every kind of doctor (pediatrician, dermatologist, allergist, etc....) and no one has ever seen it or knows what it is.  Cultures have come back negative and we have had her immune system checked (everything was normal).

Well, at her last well-care visit - we made an appointment with a new doctor and as I have for the last 7 years... anytime we come in contact with a new doctor I have them look at her spots "just in case" I get lucky and someone will say "OH, I know what that is" - Yea, never happens!!  WELL, this time the doctor said "hmm.... has anyone ever mentioned PLEVA to you?"   Well, I looked it up online and when I saw the description and pictures of it I nearly wet my pants!! 

I have yet to have her officially diagnosed (the spots cleared up before we could get to the doctor.  I'll have to make a new appt. as soon as the new batch shows up!)

This has been a really difficult battle for the last seven years.  Seeing my sweet little angel covered in the angry red sores really cuts through my heart.  At first, I wasn't sure that PLEVA was it because the initial pictures I saw didn't look like her "sores".  Hers are dime size and red and have open middles.  But then, I saw someone's pictures that they posted and I said "OMG, that's it!! That's what my daughter has!!"  As she got older, moreso now, the spots look much angrier - redder - and with huge wide open centers (gaping holes, I call them).  I slather neosporin on them to keep away infection and have the poor child covered in band-aids constantly.  Keeping her from scratching them as they heal (that's when they get itchy) has been a real battle, not to mention the constant comments she gets at school (why do you have so many boo-boos?  etc....)

She used to get them all over her little face as a little child, but as she got older, they shifted.  Now she rarely gets them on her face but gets them in fierce "batches" on her arms, butt, upper thighs/hips, and legs.  She hasn't had any on her trunk or back yet.

She has handled them quite well over the years and other than the itching, I don't think they cause her too much discomfort, thank goodness.

I wish there was something to make them heal up faster, but nothing we have tried makes any difference.  I just try to keep them covered so she doesn't scratch them.

Thanks for "listening" to my long post.  I'm amazed to finally find people who can relate to what we have been going through for so many years.  It's like a whole new world opened up for us!!

Thanks for sharing your stories.  I will be extremely shocked if she does not test positive for PLEVA, I mean - if not this what the heck else could it be??!!!

Have a great day!

Loveysmommy

Offline EX-itchell

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Re: Pityriasis Lichenoides Chronica
« Reply #219 on: Monday January 22, 2007, 09:02:28 AM »
Hello and welcome to Skincell,

I'm really glad you recognise her spots.  Lots of people have biopsies that do NOT come back positive so don't worry about that at all.  If the derm thinks pleva is likely, then that's probably what your poor daughter has.

Do read everything you can about it on the boards, and you should get lots of tips.  I'm a plc sufferer: this is a disease similar to pleva.  So here are a few tips:

keep your daughter cool.  Getting hot makes the condition worse.  I wear only pure cotton next to my skin, and try to keep a bit cool, rather than snug, even at night when my body's tendency is to get hot.  When you get hot your skin itches, you scratch, and get more spots!

Consider your daughter's diet.  Have you looked at this aspect at all?  Keep off fizzy drinks.  Let me know if you have questions in this area.

And above all, ask questions of the other sufferers about ANYTHING and we'll all try to help.

 :hugs:

EX-itchell
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