Author Topic: Pityriasis Lichenoides Chronica  (Read 576858 times)

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Offline tnczeller

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Re: Pityriasis Lichenoides Chronica
« Reply #580 on: Sunday February 08, 2009, 11:34:57 PM »
My 9 year old daughter was diagnosed with PLEVA on Friday after having a biopsy done of a rash she has had for over a month. I am kind of freaking out here. I read sites that say it is an immune disease, can anyone tell me what this means? She has been treated with steroids, which also freaks me out. I have changed her cleanser to cetaphil and oatmeal, hoping to reduce the inflammation of the rash. I have also increased her fluid intake and I am now controlling what she eats, like less sugars and pop, stuff like that. I homeschool so I am grateful that she don't have to go through teasing from other kids. She is covered from head to toe and breaks out more every day. If we put steroids on the spots one day, she has more the next. I am afraid of the long term effect of antibiotics such as erythromycin and tetracycline. Do I need to keep her away from germs? Will that effect her break outs? I mean if she get sick, she has always been kind of sick, will she break out more? I am confused as well on how she may have gotten it. Some sites say it is brought on by agents like strep or staph, she has had strep throat WAY too many times. She got her tonsils out last May and has had strep two times since. She is miserable with itch and pain and she is embarrassed. I am really just wanting to stay up to date on any new developments. My husbands says don't stress but she is my baby and it hurts me to know what she is going to go through, any encouragement is greatly appreciated...

Offline lindadiane

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Re: Pityriasis Lichenoides Chronica
« Reply #581 on: Thursday February 12, 2009, 12:44:41 AM »
PLC Girl where are you? Email me at [email address removed]. I have been trying to reach you.
« Last Edit: Thursday February 12, 2009, 12:01:58 PM by totalfolly »

Offline lindadiane

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Re: Pityriasis Lichenoides Chronica
« Reply #582 on: Thursday February 12, 2009, 11:55:39 PM »
I HAVE noticed I get very itchy:
(a) after eating wheat products
(b) prior to my period
(c) when sleeping - esp when the heater is on

I have tried several antibiotics and it has not cleared. I got an infected ingrown toenail and the doc put me on Keflex and my skin did not clear. It gets much better with natural sunlight and the tanning bed helps. My skin gets dry so I moisturize and moisturize but I still wakeup itching in the night. I take a Zyrtec every evening and it helps some. I cannot do Benadryl because I am a zombie the next day. It's been over 6 years and my bumps have changed. Not really blistery any more...they are bumpy, get whitish on top and hard dry skin. When that pops...it's a like a round pleva circle underneath. It is SO annoying!!

Offline Pleavstinks

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Re: Pityriasis Lichenoides Chronica
« Reply #583 on: Friday February 13, 2009, 11:29:55 PM »
tnczeller, hang in there.  Our 8 yr son was diagnosed with Pleva in Oct.  he was at one time covered from eyelids to toes.  The sun is supposed to help, but he broke out while on Vacation in Fl.  On Wed. a rash started on the back of his neck, and we thought it was sun poisioning.  When we got home on Sat. he got out of the shower and I could not believe it.  It looked like he was wearing spotted swimming trunks.  Any place that had not been exposed to the sun was covered.  By Monday morning they were moving up his stomach and down his legs.  We went to the Dr. Monday and Tues.  they did not know and sent us to a dermatologist.  She said it was Pityariasis Rosea.  It kept getting worse, we took him back and they did a biopsy that came back PLEVA.  He was on the erythromycin for 2 months.  Not sure if it helped or not. Our derm. did a full blood work up, that came back good.  We worry about t-cell lymphoma. He is spot free at this time.  I understand how you feel, I worry if he gets a cold he will break out all over.  We did get to see a full range of spots.  He had what we called pinpoint ones that seemed to come and go if he ran around and got hot.  The angry ones people have described, and what we call the "barnicles" on his elbows and knees, they were white and hard, just wanted to sand them off.  He has a great attitude, when people ask what the spots are, he tells them, its not chicken pox, I'm not contagious, don't worry my t-cells won't hurt you they only attack my skin.  Sorry to ramble, I have never posted before.  Best of luck to you and your family. 

Offline tnczeller

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Re: Pityriasis Lichenoides Chronica
« Reply #584 on: Thursday February 19, 2009, 03:59:58 PM »
Thanks so much! The saga gets worse... they did a biopsy and confirmed it is PLEVA. The derm said she is sure it is PLEVA but sends all biopsies out for a second opinion, so she did that. The second derm said it looked like a reaction to a bug bite. I understand that a bug bite can cause hives... this is not hives. This is very much little red bumps with heads, they resemble chicken pox. I have never even heard of a bug bite causing hives for what is now going on 2 full months. I want to know how the derm who saw her and the bumps and her ped can be overruled by a derm that has never even seen her? A bug bite does not fit. Not to mention that they went away for a couple days, when we controlled her diet and what she had exposure to, and now she is covered again. If it was a bug bite, why would it go away and then come back? Her derm told us up front that PLEVA is often diagnosed as chicken pox or a bug bite. I don't know where to turn now. Her ped said it don't make sense for her to have a bite that has a reaction for this long. She is going to do some of her own research on PLEVA and is going to treat her.

Offline janjan

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Re: Pityriasis Lichenoides Chronica
« Reply #585 on: Monday February 23, 2009, 06:24:41 PM »
Jahan,

We have a lot in common. my daughter is 9 and was just diagnosed with pityriasis.  I feel so bad for her because some of her friends have noticed the ones on her hands and face.  They have pointed them out to her and asked, "What are those?"  Nothing has worked for her, creams, antibiotic etc...  I feel that ubv light therapy is our next step.  Also, now that Summer time is coming, we need to get them out in the natural sunlight.  I've heard many people say that in the Summer, it gets a lot better.  She has had it now for about 5 months.
« Last Edit: Tuesday February 24, 2009, 02:47:30 AM by janjan »

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #586 on: Monday March 02, 2009, 07:41:16 PM »
Hi JanJan

Sorry to hear about your daughter.  Mine has had it since she was 2, and she will be 11 this summer.  They told us it would take 5-10 years to clear, probably closer to 10.  Still waiting..

Hope she's alright.  Have your docs given you a length of time range, etc..?

J

Offline lindadiane

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Re: Pityriasis Lichenoides Chronica
« Reply #587 on: Tuesday March 03, 2009, 11:04:53 PM »
What made or makes the doctors think it will take 10 years? Where did that figure come from?
Very curious!!
Thanks, Linda

Offline princesslaura

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Re: Pityriasis Lichenoides Chronica
« Reply #588 on: Wednesday March 04, 2009, 05:29:53 PM »
Hey

I'm 17 and i live in England and i've got PLC, i've had it for about 5 or 6 years now and to begin with it was terrible but then started to settle down a bit but now its started to come up really bad and its coming up on my face which it never has before. I used to have regular dermatologist appointments to monitor it and had phototherapy for a while but it didn't really do much just made me burn so me and my mum decided it was probably better to leave that. All the doctors give me is hydrocortisone cream which doesn't seem to do anything for me. I'm no longer under the care of the hospital here as they said my case wasn't severe enough but when i go to the docotrs they don't even know what PLC is, so does anyone know anything that can make it look less severe or just make it go away from my face . . .  i hate having to explain it to people cause they just don't get it!

Thank you!  :)
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Offline elseaeff

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Re: Pityriasis Lichenoides Chronica
« Reply #589 on: Wednesday March 04, 2009, 05:48:49 PM »
What made or makes the doctors think it will take 10 years? Where did that figure come from?
Very curious!!
Thanks, Linda

I am 53 years old now, diagnosed with PLC at 49. All research I did at that time showed that PLC usually affects the young and will dissapate with puberty. Obviously that was a bunch of BS. Excuse my French. I don't know why doctors give you dates for how long you or your children will have PLC or Pleva, because it comes when it wants, it goes when it wants and they don't know what starts or stops it. They doctors aren't even sure how to treat it properly.

-I have learned to never allow your skin to dry out. Always keep it moisturized.
-Cut down on showers and baths unless absolutely necessary. When bathing, before drying, I cover my body with a baby lotion GEL and rub it into my wet skin well. Then I dry and put on clothing (preferably long so my furniture doesn't pick up the gel).
-I have found that all prescription itch medications given to me by the derm have been too heavy and make the itch worse. A light, water-based lotion works best, applied often. Uceren's Original Body Lotion isn't all that sweet smelling, but it's light and doesn't clog the pores, allowing for air to circulate and the itch to calm.
-NEVER NEVER NEVER get a sunburn. Get the recommended sunlight from your derm then put the highest sunscreen on that you can find. Being sunburned with PLC or PLeva is the worst feeling in the world.
-I use the bathing gloves rather than a wash cloth or scrunchy to bathe because the feel wonderful, they ex-foliate the skin and can be washed like regular bathcloths. I love to take a bath 0occasionally where I use lavender sea salts and those gloves to exfoliate the dry skin (which causes terrible itching) then use a lavender oil, rubbing it into my skin and soaking in it as long as my MS can stand the heat of the water.
- Never use hot water in a bath or shower. It dries the skin out. It feels wonderful, but you'll pay later.
- Sunlight is the best medicine for this problem. My derm recommends no more than 5 minutes a day. After that I put on the highest SPF sunscreen I can find and try to keep out of the sun as much as possible. too much is worse than none at all.
- the oral tetracydes can, over time, do damage to teeth and such for children. I will use topical tetricides for my itch.
-My PLC NEVER goes away. I am always in some sort of morph somewhere on my body. It begins in papules, and morphs into something like psoriasis and ends with a brown flaky spot that sometimes can be scraped off with my nail. There is always somewhere on my body in one mode or another of PLC.
-I ignore dates and lengths of time given for the PLC or PLEVA to run it's course. No one can be sure. You're looking for empty security.

I have a million other things that I had to find out on my own over the last 4 years of having it. I do have a compromised immune system. I have MS. You would be surprised to learn the many different disorders you have in your life are the result of a compromised immune system that you never even knew you had. Don't freak out over it. Don't freak out over materials you may read about a lymphoma associated with some types of PLC and/or PLEVA. They are so rare that my doctor has never seen any in the dozen years she's been working with this and she's been named #1 derm in Richmond for more than 7 years.

Do not be afraid or show fear, your children pick up on that right away. As an adult, don't be afraid. It's not a life threatening condition, though it can be (if you are that kind of person) embarrassing because of the spots. At this point in my life I just don't care.

Feel free to contact me with any questions or concerns. Please note, I have little information on children, mine are grown and I was 49 when I was diagnosed. I'm sure many of my routines and treatments would work for children, but I am more familiar with adults.

Regards,
elseaeff

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #590 on: Wednesday March 04, 2009, 06:09:57 PM »
The ten years was just from my old pediatric dermatologist in Boston.  We moved away, but he told me about 10 years just based on his experience of dealing with PLC/PLEVA for 25 years. 

Offline lindadiane

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Re: Pityriasis Lichenoides Chronica
« Reply #591 on: Friday March 06, 2009, 05:22:51 AM »
Princesslaura:  I use Vitamin E oil and Protopic on the bumps on my face. I put it on before I go to bed and use cover up in the morning. I get a few around the nasal area, two on my brows and a few near my chin. I also found that Lacome toner seems to help after I wash my face. Try to get a little sun on your face too.

Offline spicedmoxie

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Re: Pityriasis Lichenoides Chronica
« Reply #592 on: Friday March 06, 2009, 03:51:10 PM »
Has anyone tried bromelain? I found this study:
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17671882&log$=activity

-- Showing bromelain working with 8 people.

I got PLC about 11 years ago, never had PLEVA. Have spots all winter and it disappears in the summer - it only takes a little sun daily to keep it at bay. But it does have to be every day: I've been thinking of getting a lightbox, because I just can't get enough tanning time in my schedule (mom of two small boys).

I don't tan or burn easily, and I wonder if our skin's reaction changes the "sun dose" we need. The night before a breakout I'm not itchy but I do have insomnia - itchy comes after the breakout.

Anyway, if bromelain works, I'm going to be all over that, because it'll just be easier. I'm so tired of these spots! The problem is that I go through outbreaks all winter, getting worse as the light fades, so I'll have to just keep taking it all winter - after an outbreak, it's sort of a done deal, and they just have to heal.

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #593 on: Friday March 06, 2009, 06:22:57 PM »
Hi SpicedMoxie, I am familiar w/ the bromelaine.  I was really excited to see it, but hy spouse is skeptical/nervous about issuing bromelain to my daughter (she is 10).  W/ puberty starting, etc..  We agreed that if she is still dealing with this at say, 16, we'll give the bromelain a chance.  I'd love to hear if you have any success with it.  Please keep us posted!!  It looked like an exciting study.  But after so many years, I don't want to get my hopes up too much.  I can relate to what you are saying..  My daughter has had it for eight years , since she was 2.  Even in summer she is not completely spot free, but there is a big improvement.  Our winter experiences are similar to yours. 

J

Offline emmamae

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Re: Pityriasis Lichenoides Chronica
« Reply #594 on: Friday March 06, 2009, 10:22:28 PM »
Hi J, I was just wondering if you noticed any difference in your daughters plc during vaccine time? Or if your doctors had any input as to how to handle vaccines when she has an outbreak etc? My daughter has not had any spots for sometime now and she is due for her boosters for kindergarten and I am curious if this will affect her pleva. I have not had any luck finding much information as most people  on this board tend to have gotten this when they were older or when there kids were past the vaccine ages. Any input on the subject would be helpful.

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #595 on: Monday March 09, 2009, 01:19:07 PM »
Hello Emmamae,

I am personally not too concerned about the standard vaccines.  My daughter developed PLC when she was exactly 21 months old.  She had not been to the doc since her 18 mo. checkup.  She had last received vaccines at 12 mo.  It took a couple of months to get diagnosed (at 23 mo.).  I took her to the doc at 24 mo. for her 2 year checkup.  She did receive a couple of vaccines.  It made no difference to her PLC. 

That being said, there is that new vaccine out for HPV.  They are targeting young teenage girls.  My daughter is only 10, but I know her ped. will bring it up in the next year or two.  I will not vaccinate her for it.  First, it only protects her against a few strains of the virus.  Second, I get a little worried about "new vaccines".  Third, there was a scary thing going on in the news.  A girl who had suffered PLC for a few years was given this vaccine.  She had a terrible reaction and is apparently sick in the hospital and not expected to make it.  Maybe having PLC had nothing to do w/ it, but the lawyers/parents of the girl were saying to the drug company that w/ the new vaccine, they should give warnings to people who have "immune based issues".  Every vaccine has its risk.  I am for vaccines that have been around a long time.  But not this new one.  Therefore, I will never vaccinate my daughter for this.  If you are interested in reading more about this, you can do an online search, but it is in litigation now, while the girl lies dying.  Really tragic.  Hope that helps.

J

Offline princesslaura

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Re: Pityriasis Lichenoides Chronica
« Reply #596 on: Monday March 09, 2009, 02:11:04 PM »
I've recieved the HPV virus at school, and i had no reaction to it at all, i've had PLC for a few years but i didn't notice any difference just a slightly soar arm but thats completly normal, i've not the last one next month as they do it in three doses, my mum had to give it a lot of thought but she decided the the pros outweight the cons
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Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #597 on: Tuesday March 10, 2009, 12:52:52 PM »
Hey PrincessLaura,

What country do you live?  Do you try to get a little sun on the PLC in the summer?  Good to know about Gardasil/HPV.  I thought about that girl w/ PLC and the vaccine.  All vaccines, esp. new carry a small risk.  It was probably coincidental that the girl had such a tragic reaction, maybe not related to PLC.  But you never know. 

My daughter is going to be entering the teenage years soon.  How do you deal w/ it being a teenager?  Are your friends cool about it?  I just wonder what to expect.  In some ways, since she's never known any different, it might be "easier"; but in other ways, so many years is so long to wait.  It is never "easy" for anyone, esp. where it is so rare.  Not like you meet too many teenagers/kids w/ PLC/PLEVA.  (My daughter gets a smattering of PLC around her chin.  She also has chronically dry skin, and her face gets a little eczema-ish, which can make little reddish bumps too.  Plain vaseline works best for her.  She hasn't hit that greasy acne stage yet.  Does your PLC make you chronically dry, or is it better because you are a teenager and therefore produce more natural oils?   J 


Offline princesslaura

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Re: Pityriasis Lichenoides Chronica
« Reply #598 on: Tuesday March 10, 2009, 07:17:46 PM »
Heya J

I live in England, so as you can imagine we don't really get that much sun, but i do notice that when i go on holiday my PLC does get a little better eapecially on my face, i have to be careful though as i am really fair skinned so burn easily. I only got PLC when i was 12 and at that point it was terrible, very noticeable on my arms, body and legs. I couldn't do aports at school for about 4 months because everytime i moved too fast the soars would split open and bleed on my kit. After a couple of visits to my dermatologist they decided to give me phototherapy three times a week, i did this for about 10 weeks and then stopped as it made me burn and the PLC around my eyes became really bad, i looked as if i'd been crying for days. When i was 14 and moved to my upper school my skin slowly started to calm down. I'm now approaching my 18th birthday and its pretty good i've got used to it, its always there but flares up now and again when i get stressed or if i get too hot or too cold.

My friends have been amazing about it, they all say to me they don't notice anything, but i know their only saying it to make me feel better. The only rather annoying thing that i have encountered is whenever i have to explain my condition to anyone they assume that its ezxcema . . . i find it most annoying.

I get some patches dry skin, especially around my mouth where i currently have a patch of PLC, but i use E45 cream three times a day and i try to drink plenty of water to keep my skin hydrated. I also found aloe vera cream works quite well at soothing the PLC patches, it stops the itching. I never had much problem with spots but i will say stay away from things like clearasil or spot creams they just dry out the skin even more. I was given hydrocortisone cream for use on my eyelids where i get PLC particularly badly but i try to avoid using it as i was warned it would thin my skin. Recently my skins been getting worse as i've been getting more stressed with my upcoming A level exams, as i have to do well in them to get in to university and i have no idea what to use to try and get my skin a bit better, i was thinking of going to use sunbeds but i'm not too sure about that?

Laura x x
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Offline emmamae

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Re: Pityriasis Lichenoides Chronica
« Reply #599 on: Wednesday March 11, 2009, 12:20:49 AM »
Hi J and PrincessLaura, thank you for sharing your experience with vaccines. I did look up the Gardasil/hpv vaccine  on the net and there were several complications with this vaccine, I only found one story of a gilr who lives in Northen California who also has plc and is now paralyized after the vaccine (not sure if there is a connection.)  I wasnt sure if this was the same girl you were speaking of J? My daughters derm says to go ahead but to not do more than 2 vaccines at a time and wait at least a year for anymore. I really hate all of this and worry to much. She is also going in for a second round of testing for allergies which we had to choose a blood draw vs. patch testing. Ugh.