Author Topic: Pityriasis Lichenoides Chronica  (Read 576865 times)

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Offline galpal

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Re: Pityriasis Lichenoides Chronica
« Reply #260 on: Thursday June 28, 2007, 07:42:20 PM »
Hi J

No, we did not see Gellis but one of his associates.  He said they have seen quite a bit of PLEVA.  It is uncommon but not rare.  It does resolve but there is no timeline.  My daughter has had it since last December so she has already gone past the usual timeline for PLEVA.  Right now, the sun is all that works.  She is 7 but puberty was never mentioned.  We were given a strong topical steroid and another cream.  I've used them on new ones but I may stop until after summer because there is no way to know if they are working or if it is the sun.  She now has lots of hyper and hypo pigmentation. 

Hopefully, this thing will burn out before winter comes.  Plus, all of this sun is just not good for irish skin.  Can't keep that up indefinitely. 

Chris

Offline M@t

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Re: Pityriasis Lichenoides Chronica
« Reply #261 on: Wednesday July 04, 2007, 03:19:32 PM »
Hi there Gordo! :hi:

Welcome to Skincell!

Kindest Regards,

Matt
The early bird gets the worm, but the second mouse gets the cheese in the trap
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The Doppler Effect - Why bad ideas seem good when they are coming towards you at high speed. Don't rush things!!!

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #262 on: Saturday July 07, 2007, 11:34:02 PM »
Hi Everyone, G'day Gordo, welcome to the forum.

Could anyone with PLC or PLEVA please tell me if your spots were ever itchy or a part of your body was itchy before the condition which you might have used Calamine Lotion to anoint.

Regards,
Josh

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #263 on: Monday July 09, 2007, 12:39:54 PM »
Hi PLC4Me,

My daughter never complained of previous itchiness prior to the onset of her PLC.  They appeared very suddenly on her legs, and within a week or so, she had in excess of thirty or more on her legs.  Even now, they don't really itch.  Although they do get flakey and dry, so I do moisturize.  What is your PLC status?  (Free or still having them?)  Weren't you the one who recommended tetracycline?  My daughter is still too young for tetracycline, although I would consider giving it a try when she is older. 

J

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #264 on: Monday July 09, 2007, 01:19:42 PM »
Hi PLC4Me,

My daughter never complained of previous itchiness prior to the onset of her PLC.  They appeared very suddenly on her legs, and within a week or so, she had in excess of thirty or more on her legs.  Even now, they don't really itch.  Although they do get flakey and dry, so I do moisturize.  What is your PLC status?  (Free or still having them?)  Weren't you the one who recommended tetracycline?  My daughter is still too young for tetracycline, although I would consider giving it a try when she is older. 

J

Thanks for replying J,

I've been free of PLC for almost 2 years now. I just asked this because the other day I remembered getting very itchy around my thighs just before I got PLC, and I had used calamine lotion on it. Shortly after the PLC came. I was thinking it may have been caused from the calamine lotion and maybe people who have PLC or alike conditions who are using calamine lotion should try something different to see if it gets better. Just a suggestion. But yeah like you said and like I've experienced, the spots aren't that itchy...
 
Regards,
Josh

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #265 on: Tuesday July 10, 2007, 09:00:26 PM »
Hi PLC4Me,

I like hearing that people do become PLC free (also like ex-itchell).  How long did you have it for all together, (age of diagnosis) and do you think that tetracycline really helped you, or do you think it would have gone anyway?  Sun didn't help much?  Also, when it went away, was it a slow subtle fade out, or did it resolve over a relatively short period?  (I remember my daughter's PLC spots appeared over a relatively short period - a week or more).  Thanks for info,
'

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #266 on: Tuesday July 10, 2007, 11:48:04 PM »
Hi PLC4Me,

I like hearing that people do become PLC free (also like ex-itchell).  How long did you have it for all together, (age of diagnosis) and do you think that tetracycline really helped you, or do you think it would have gone anyway?  Sun didn't help much?  Also, when it went away, was it a slow subtle fade out, or did it resolve over a relatively short period?  (I remember my daughter's PLC spots appeared over a relatively short period - a week or more).  Thanks for info,
'


Hey,

I can't really remember how long mine lasted, think it was about 10 months all up.. Started when I just turned 16. I did all those UVB treatments, 3 times a week. Including putting the creams all over your body every night. As well has freezing cold showers in the morning, with skin sensitive body wash. I didn't find the sun helped much, it may have, but it was helping very slowly that's for sure. I started taking tetracycline about 7-8 months in. And I think it took a couple of months to fully disappear. It was a slow process, but the clearing of spots is very noticable, you can start to see the bigger spots having more trouble fading. They usually came out as scars. I have a few left .. I showed a few of them to my derm, he said one was a mole and another was a mozzi bite.. I was like.... yeh sure. My spots appeared very rapidly too. Broke out near my lower stomach, I remember thinking that they were flea bites, but they kept spreading. Soon enough they were all over my arms and stomach and legs. None came on my face, although they did reach my neck, but those seemed to go. You should put your daughter on tetracycline as soon as she's old enough. Also have you ever tried any anti-fungal creams on the spots?

Regards,
Josh

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #267 on: Friday July 13, 2007, 01:08:05 PM »
Thanks for the info PLC4Me!  I did try an antifungal once, prior to her being diagnosed, but it just seemed to irritate her already sensitive skin.  You were biopsy diagnosed, right?  They didn't think it was pityriasis rosea?  I definitely am going to talk to my doc about tetracycline, if she has this in a few years (hopefully not; she is soon to be 9 years old). 

J

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #268 on: Friday July 13, 2007, 10:34:15 PM »
Thanks for the info PLC4Me!  I did try an antifungal once, prior to her being diagnosed, but it just seemed to irritate her already sensitive skin.  You were biopsy diagnosed, right?  They didn't think it was pityriasis rosea?  I definitely am going to talk to my doc about tetracycline, if she has this in a few years (hopefully not; she is soon to be 9 years old). 

J

Yeah biopsy confirmed it was PLC. You're right.. 9 is way to young to take tetracycline. I don't think I got pityriasis rosea, although some spots looked different to others and one did look like the rosea (this was the scar the derm thought was a mozzi bite.) It wasn't crusty at all, it was rather really smooth and never got sore or itchy. I did scratch it once for the hell of it but couldn't even make it bleed. Keep me updated on your daughters condition.

Josh

Offline tetrifin5

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Re: Pityriasis Lichenoides Chronica
« Reply #269 on: Friday August 17, 2007, 01:29:03 AM »
I am so overwhelmed! Im on antibiotics that make me sensitive to sunlight. I dont have health insurance and have racked up hthousands in E.R. bills and mis-diagnosisis! A real dermatologist has done biopsis and diagnosed me with this wretched PLEVA at last. However he will only work with me over the phone, through his nurses, because I dont have money. I just read on this thread somthing about the desiese being related to HIV! One dr in an Atlanta ER kicke4d me out after 16 hours saying to go get tested for AIDS.  I work with a man with Downs syndrom and my boss thinks Im going to infect everyone with Staph- which I dont have- right?!? This all started with a spider bite on my leg about a month ago. These sores are SINKING! They are PUS-ING! They hurt SOOOOO bad! Also there are big knots under the skin. They are on my face, the palms of my hands, insinde my ears and eyelids-all the way to the soles of my feet. YES EVERYWHERE IN BETWEEN! The palms of my hand are like STIGMATA! I sorta feel like killing myself pretty much. Not really of couse. Argh.  Ill check back tomorrow.
« Last Edit: Friday August 17, 2007, 08:48:05 PM by tetrifin5 »

Offline LIGA girl

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Re: Pityriasis Lichenoides Chronica
« Reply #270 on: Saturday August 18, 2007, 11:32:32 AM »
Tetrifin, here in Australia we have white tailed spiders and their bite is said to be linked to skin lesions, do you know if yours are linked to the bite you had?

LG

Offline tetrifin5

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Re: Pityriasis Lichenoides Chronica
« Reply #271 on: Saturday August 18, 2007, 06:50:53 PM »
I dont know. Let me make sure Ive got my dates straight. Ok. (Looking at a calander)I got the bite on my inner thigh on July 4. I did not go to a doctor. About 2 weeks later around the 18th I started itching around my breasts and arm pits. By the 23rd the sores looked like the bite, though not as big. That day I went to a "Nextcare" clinic, a sort of "doc-in-the-box" place. The dr. said I had cellulitis (which MIGHT have been a reaction to the bite)and Staph infection (which probably entered through the bite). I was treated with some hard-core antibiotics inb a shot and orally, and prescribed muproxin ointment "for the worst ones" (which was rapidly becomming a joke) That doctor never tested blood, skin  or anything.

It REALLY seems to be related to that wretched bite, though since this initial MIS-diagnosis, other doctors have doubted that I ever got bit by a spider, and have suggested it might just have been the first sore. I still have the bite though. Still larger than all the others. I mean I never saw an insect but Im almost sure of it. I was in a skirt in very,very tall grass! And once I started itching, this stuf spread all over my body very, very rapidly.

I just found this pic of a white-tailed spider bite:
http://en.wikipedia.org/wiki/White-tailed_spider
But mine looks nothing like it. I definatly have the "necro" thing assosiated with my bite(and my sores).
« Last Edit: Saturday August 18, 2007, 06:54:10 PM by tetrifin5 »

Offline Angela7

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Re: Pityriasis Lichenoides Chronica
« Reply #272 on: Sunday August 19, 2007, 05:13:15 PM »
Dear Tetrifin - so sorry to hear of your skin crisis!  I just wanted to let you know that your spots and descriptions don't sound similar to my son's PLEVA though.  He has never gotten spots on the palms of his hands in all of his years (more than 5 years now) of PLEVA, even when he is covered.  He also rarely gets them on his face, although he has had a few deep sores on his eyelids over the years.  The majority also don't tend to get puss-filled.  He will occasionally get deep ones that eventually scab.  They tend to be the worst on his trunk area and he also gets them on his chest, back and arms and legs when covered.  I wish you luck and am sorry to hear that you are having a tough time.  Take care!   

Offline chie

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Re: Pityriasis Lichenoides Chronica
« Reply #273 on: Tuesday August 21, 2007, 10:45:29 AM »
Thanks for the info PLC4Me!  I did try an antifungal once, prior to her being diagnosed, but it just seemed to irritate her already sensitive skin.  You were biopsy diagnosed, right?  They didn't think it was pityriasis rosea?  I definitely am going to talk to my doc about tetracycline, if she has this in a few years (hopefully not; she is soon to be 9 years old). 

J

Yeah biopsy confirmed it was PLC. You're right.. 9 is way to young to take tetracycline. I don't think I got pityriasis rosea, although some spots looked different to others and one did look like the rosea (this was the scar the derm thought was a mozzi bite.) It wasn't crusty at all, it was rather really smooth and never got sore or itchy. I did scratch it once for the hell of it but couldn't even make it bleed. Keep me updated on your daughters condition.

Josh
hello there!i've been diagnosed with PLC a year ago and had undergone many tests and treatments but it seems all of it doesn't help really i even took antibiotics but until now brown spots are present and some of it are becoming white that seems to be the scars.these few days i've  been trying to research and read about this PLC because it really bothers me having it in my body for long time now but when i read some of the cases here i feel terrible that it will really last for years i cant imagine my life having this for long time.does tetracycline helps really for these case?



Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #274 on: Tuesday August 21, 2007, 10:54:38 AM »
Thanks for the info PLC4Me!  I did try an antifungal once, prior to her being diagnosed, but it just seemed to irritate her already sensitive skin.  You were biopsy diagnosed, right?  They didn't think it was pityriasis rosea?  I definitely am going to talk to my doc about tetracycline, if she has this in a few years (hopefully not; she is soon to be 9 years old). 

J

Yeah biopsy confirmed it was PLC. You're right.. 9 is way to young to take tetracycline. I don't think I got pityriasis rosea, although some spots looked different to others and one did look like the rosea (this was the scar the derm thought was a mozzi bite.) It wasn't crusty at all, it was rather really smooth and never got sore or itchy. I did scratch it once for the hell of it but couldn't even make it bleed. Keep me updated on your daughters condition.

Josh
hello there!i've been diagnosed with PLC a year ago and had undergone many tests and treatments but it seems all of it doesn't help really i even took antibiotics but until now brown spots are present and some of it are becoming white that seems to be the scars.these few days i've  been trying to research and read about this PLC because it really bothers me having it in my body for long time now but when i read some of the cases here i feel terrible that it will really last for years i cant imagine my life having this for long time.does tetracycline helps really for these case?




There's no harm giving it a try. Just make sure you don't expose yourself to too much sunlight when you are taking them. i found mine clearing up a few months after I started taking them.

Offline galpal

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Re: Pleva
« Reply #275 on: Sunday August 26, 2007, 06:44:13 PM »
Tetrifin,

I hope you are doing better.  Sounds like you were diagnosed by a derm.  The first outbreak is really terrifying.  You've been hit really hard.  My daughter had hundreds with the necro and many became infected with staph.  It will get better.  The sun has been a miracle cure although we are very, very careful. 

Remember, it will not last forever.  You will get better. 

Offline rise_against_girl

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Re: Pityriasis Lichenoides Chronica
« Reply #276 on: Tuesday September 18, 2007, 03:45:39 AM »
hey everyone. i am new to this site, i just joined today. I'm a little confused on how it works lol. but i have just been diagnosed with Pityriasis Lichenoides, i have a rash all over my body, i also have these white dots all over my body. does anybody have these? and do they scar? i am really upset about this disease, iv had it for a little over 2 months and my family doctor just told me a few days ago what i have. iv seen 4 different doctors and a specialist and they finally told me the results. i am just so upset about it, its something im really insecure about, and i only wear sweaters now because i dont want anyone to see it. is their any helpful tips??
"When hope becomes a strange place..."

Offline rise_against_girl

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Re: Pityriasis Lichenoides Chronica
« Reply #277 on: Tuesday September 18, 2007, 03:51:32 AM »
i am honestly so upset about having this Pityriasis Lichenoides. i feel sick about it, i havent slept much lately. im only 18 years old i cant imagine having this all over my body for the rest of my life. i dont even feel attractive anymore because of it. i have tons of white dots all over my body. do they scar? i really need to know to feel at ease with myself. i really hope they dont scar.
"When hope becomes a strange place..."

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #278 on: Tuesday September 18, 2007, 06:26:19 AM »
hey everyone. i am new to this site, i just joined today. I'm a little confused on how it works lol. but i have just been diagnosed with Pityriasis Lichenoides, i have a rash all over my body, i also have these white dots all over my body. does anybody have these? and do they scar? i am really upset about this disease, iv had it for a little over 2 months and my family doctor just told me a few days ago what i have. iv seen 4 different doctors and a specialist and they finally told me the results. i am just so upset about it, its something im really insecure about, and i only wear sweaters now because i dont want anyone to see it. is their any helpful tips??

Hey, it can be hard to get used to at first. Anyone who notices it just automatically assumes it's contagious. But after a while you will stop caring what people think and it will make you a better person. Trust me :)

I've also told people about an antibiotic called tetracycline, which I was taking when my PLC vanished. You should ask your derm about it.

Goodluck, take care,
PLC4ME

Offline Nichole

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Re: Pityriasis Lichenoides Chronica
« Reply #279 on: Thursday September 20, 2007, 11:00:17 PM »
Hello, I've had Pleva for over a month now.  I need to know if anyone has been on a cruise.  My dots started one day after returning from a cruise to alaska over the summer.  Also, a few months back I had the most painful bite of my life (guessing a spider) that left a huge scar.  Has anyone else had a simliar experience?

I'm 20 years old, this is not the best time to be covered in painful red bumps and scabs.  They just keep spreading....from my eyelids down to my toes.  Will they ever stop???  Is anyone else on the verge of a mental breakdown?  And does anyone else feel pain accompanied by the itching?  I get a feeling of waves of pins and needles sweep across my neck and back.  How do you guys deal with this pain?