Author Topic: Pityriasis Lichenoides Chronica  (Read 553339 times)

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Offline Angela7

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Re: Pityriasis Lichenoides Chronica
« Reply #240 on: Saturday June 02, 2007, 04:15:30 AM »
Hi J - haven't checked here in a while but it's that time of the year - my now almost 8 year old has to hit the beach with spots as he has had to do for the last 5 years.  Our kids' PLC has always had so much in common - my son's spots always look redder and angrier after initial sun exposure but it also helps so much in the long run.  And my son didn't respond to Erythro after the first initial treatment with it.  Like you, I do very little now, sunlight, moisturize and wait.  It has definately improved over time - his outbreaks seem less intense and he is so used to it that he barely notices them.  Hope you are well and take care!   

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #241 on: Wednesday June 06, 2007, 11:53:28 PM »
Hi Angela, always nice to hear from you.  Summer is upon us, my daughter will be 9.  It is nice to see some summer sun improving after the winter.  (Despite being in FL, there is still a pretty major flareup throughout the winter months).  Do you still go annually for a checkup for your son?  Do they still say the same thing?  Did you read that study I posted a few weeks back about a retrospective study of PLC/PLEVA kids (they surveyed 124).  It was interesting.  I noticed the duration for the condition was as little as a few months til as long as 11 years for resolution!  I hope it will happen, and try to keep optimistic; but it is discouraging, don't you find? My daughter, getting older, is sometimes becoming more self conscious, esp. in the winter months, because here, in FL, since winter is warm, you still wear the short sleeves etc.. but the UV index becomes quite low, and she always gets the PLC more extensively (particularly on upper legs/arms, esp. on back of legs/trunck.  I am going to bring her to the derm for her annual check, although it is all the same, I feel, esp. when the derm doesn't really see PLC/PLEVA.  (I miss Boston doctors!).  Does your derm really have alot of PLEVA/PLC kids?  Are they really optimistic?  Thanks for the insight,

J

Offline alphaqforever247

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Re: Pityriasis Lichenoides Chronica
« Reply #242 on: Friday June 15, 2007, 03:20:35 AM »
hello everybody my name is norman i am 24 now.  i have posted in this site back in 04 when i was first DX with pleva.  Since then thigs have been good though there has never been a time where ive been 100 percent pleva free i always have a spot here and there.  Though for the past month its getting bad again to the point where i dont want to take my shirt off at the beach.  It has never been this bad only when i first got DX with it.  I would think during the summer time it would get better because of the more sun exposure but it seems like its getting worst.  i am not alergic to ne thing.  Ive never really had ne health problems till i got dx with pleva a month later i get dx with excema.  should i go back to my meds erythromyocin, and lay out in the sun everyday???

Offline Charlotte Marie

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Re: Pityriasis Lichenoides Chronica
« Reply #243 on: Monday June 18, 2007, 12:42:27 AM »
I am a 67 year old white female who has been dealing with pityriasis lichenoides chronica now for 6 years...I have never had less than a hundred spots on me...most of mine are on my legs and arms but have occasionally had a few on my ear and jawline and my neck...I too have run the gammut with the dermatologist taking antibiotics and prednisone and none of it helped...I have had more success using fresh aloe vera gel with really does seem to help the spots heal faster but doesn't by any means keep me from breaking out and I have definitely noticed that anything going on in my life that causes me to be upset DEFINITELY causes me to break out much more so I do believe that nerves play a big part in this even though the doctors have told me that it doesn't...are there any other senior citizens out there dealing with this disease?...I feel like such a leper...living in Texas it is really hard in the summer time wearing long pants and long sleeves but I look so awful I just can't wear shorts or short sleeves.

Offline Angela7

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Re: Pityriasis Lichenoides Chronica
« Reply #244 on: Monday June 18, 2007, 01:54:44 PM »
So sorry to hear of your suffering.  As a mom of an almost 8 year old PLC kid (he has had it for 6 years) I sure can relate to how hard it must be for you.  I can only attest to the wonders of the sun for him.  He too is covered again after the NE winter and spring and even just a few days of some sun exposure have helped.  The spots looker redder and angrier at first but dry up pretty quickly.  For adults I have also heard that some people were having success with the anti-viral herpes medication Acyclovir - perhaps you can discuss it with your derm.  My derm was not willing to okay it for my son due to his age but it is a widely used and supposedly safe medication.  As always, we can usually take a cue from kids on the right way to live - he hangs out happily at the beach, covered with spots, not noticing that others are staring at his chest and back because he is just too happy playing in the sand and waves.  But even after all this time with PLC I still have to remind my own extended family not to talk about his spots in front of him.  I usually let him get 15 minutes of sun B4 putting sunscreen on him and it is already helping.

Jahan - I must confess I haven't taken him for a derm visit in a couple of years.  His regular pediatrician knows about it and monitors it and did some reading when he was diagnosed because he was interested in the diagnosis.  I was crabby with my insurance b/c the Dr. I loved who had tons of PLEVA kids stopped taking my insurance and the one I switched to didn't give me the same well-informed feeling.  I do plan to go back over the winter since my old Dr. said that we should re-biopsy every 3-5 years just be safe.  I may pay out of pocket for my old Dr.  I guess I keep hoping for that slow burnout to happen.  And I also fear that the more it is focused on the more it may becaome an issue to him which I so badly want to avoid for his sake.  How is your daughter doing with that aspect of it?  Do you manage to go every year?  Thank you SO much for posting the study, I hadn't seen it and found it very interesting also.  I hope the summer sun (and fun) is beneficial to your daughter!  Take care, Angela         

Offline Angela7

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Re: Pityriasis Lichenoides Chronica
« Reply #245 on: Monday June 18, 2007, 01:59:33 PM »
J - I forgot to mention that all 3 ped. derms (who have many other PLC kids) who I have seen over the years are VERY optomistic that it will go away eventually - they all subscribe to the slow burn out over time theory.  Will it take 11 years I wonder?  That would make my son 13 when he clears.  If all else fails, we can always set our kids up on a date - at least they won't have to worry about their spots.  Ha ha.  Gotta keep laughing, right! 

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #246 on: Tuesday June 19, 2007, 11:35:04 PM »
I am a 67 year old white female who has been dealing with pityriasis lichenoides chronica now for 6 years...I have never had less than a hundred spots on me...most of mine are on my legs and arms but have occasionally had a few on my ear and jawline and my neck...I too have run the gammut with the dermatologist taking antibiotics and prednisone and none of it helped...I have had more success using fresh aloe vera gel with really does seem to help the spots heal faster but doesn't by any means keep me from breaking out and I have definitely noticed that anything going on in my life that causes me to be upset DEFINITELY causes me to break out much more so I do believe that nerves play a big part in this even though the doctors have told me that it doesn't...are there any other senior citizens out there dealing with this disease?...I feel like such a leper...living in Texas it is really hard in the summer time wearing long pants and long sleeves but I look so awful I just can't wear shorts or short sleeves.

Hey Charlotte,

I'm interested to know how your spots react to you being upset. Like do they flare up at the same time or the next day. And does it produce more spots? I know how you feel wearing long pants and long sleeves. I did that same thing when I got spots in summer. And it was annoying when people just assume it's contagious. !

When your derm put you on antibiotics did he put you at all on tetracycline? Because I'm pretty sure that's why my spots started going. After the light treatment gave me nothing but mutations.

Regards,
PLC4ME

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #247 on: Tuesday June 19, 2007, 11:39:24 PM »
hello everybody my name is norman i am 24 now.  i have posted in this site back in 04 when i was first DX with pleva.  Since then thigs have been good though there has never been a time where ive been 100 percent pleva free i always have a spot here and there.  Though for the past month its getting bad again to the point where i dont want to take my shirt off at the beach.  It has never been this bad only when i first got DX with it.  I would think during the summer time it would get better because of the more sun exposure but it seems like its getting worst.  i am not alergic to ne thing.  Ive never really had ne health problems till i got dx with pleva a month later i get dx with excema.  should i go back to my meds erythromyocin, and lay out in the sun everyday???

Hey Norman,

When I had it, I had cold showers every morning, and used sensitive body wash (I still do). Just before I got PLC, I was using these lynx shower gels, so maybe if you've started using lynx or a new shower gel, that might be what is causing it.

Like I told Charlotte, I reccomend asking about tetracycline. It was good for me and got rid of the spots. I hope it will be good for other people.

Regards,
PLC4ME

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #248 on: Tuesday June 19, 2007, 11:42:46 PM »
J - I forgot to mention that all 3 ped. derms (who have many other PLC kids) who I have seen over the years are VERY optomistic that it will go away eventually - they all subscribe to the slow burn out over time theory.  Will it take 11 years I wonder?  That would make my son 13 when he clears.  If all else fails, we can always set our kids up on a date - at least they won't have to worry about their spots.  Ha ha.  Gotta keep laughing, right! 

hahah yeah just gotta think positive. In most cases I've read about, kids that get it early will most likely loose it during puberty. Which is around 13.

I hope your son's spots clear up soon and you don't have to wait that long.

Regards,
PLC4ME

Offline Charlotte Marie

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Re: Pityriasis Lichenoides Chronica
« Reply #249 on: Wednesday June 20, 2007, 01:52:17 AM »
Thanks for responding PLC4ME...no...the dermatologist didn't put me on tetracycline...I was on doxycycline...also on prednisone...continued that for 2 years...also several different creams which of none helped me...as far as how my nerves affected the spots...it was usually the next day I would notice a fresh new batch of them...unfortunately I am under a lot of stress right now and my arms and legs are virtually covered with them...I have avoided sitting in the sun due to my age and the fear of skin cancer but am seriously thinking of doing at least 15-30 minutes of sun every day just to see if it will help.

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #250 on: Wednesday June 20, 2007, 09:12:54 AM »
Thanks for responding PLC4ME...no...the dermatologist didn't put me on tetracycline...I was on doxycycline...also on prednisone...continued that for 2 years...also several different creams which of none helped me...as far as how my nerves affected the spots...it was usually the next day I would notice a fresh new batch of them...unfortunately I am under a lot of stress right now and my arms and legs are virtually covered with them...I have avoided sitting in the sun due to my age and the fear of skin cancer but am seriously thinking of doing at least 15-30 minutes of sun every day just to see if it will help.

That's a good idea, they do seem to fade with the sun, and try to have cold showers. I does help.

Offline Angela7

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Re: Pityriasis Lichenoides Chronica
« Reply #251 on: Wednesday June 20, 2007, 04:40:06 PM »
Charolette - I just want to let you know that my son's spots initially look worse after he first starts to get sun - so do not fret if they appear redder or angrier after some sun exposure.  That is what always happens with him and then they start to dry up and heal very nicely after that.  I would start with smaller doses to see - maybe 5-10 minutes at the start and build up.  Remember that the spots are very sensitive, exposed skin so you don't want to burn them.  Once he gets a nice base tan, I wait longer to apply his sunscreen.  He is lucky that he tends to get nice and dark and his spots tend to clear up almost completely in the summer.  Right now he still has spots but hopefully they'll be gone soon.  Good luck and hang in there!!   

Offline galpal

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Re: Pityriasis Lichenoides Chronica
« Reply #252 on: Thursday June 21, 2007, 02:21:45 AM »
I am so happy to report that my daughter's PLEVA is finally improving.  I took her off the Erythromicin.  She is simply in the sun everyday.   I only use a 30spf everywhere except her legs.  Her legs were especially hard hit by the PLEVAs so I let them have full sun late in the day.  The Plevas started to get better within a week.  She has gone from over a hundred horrible large lesions to a few smaller ones at any given time.  I know she can not sun indefinitely due to sun damage and winter, but I hope that soon the PLEVA will burn out.  The scars left behind  by the old lesions are still quite angry but I do see some fading.  The pox marks will take a lot longer. 

In the meantime, I will be pursue an ENT.  We went to see a top derm in Boston and I brought up the subject of tonsillectomy.  It is not a proven cure(although there is a case study)  for PLEVA but it is known to help some skin conditions.  My daughter gets lots of new ones whenever she has a cold/sore throat.  Strep is rampant in our schools during the winter months.   I also wonder about the timing of this disease.  In many children, it begins around the same time as they start to lose teeth.  My daughter's outbreaks began and were at their worst when she had several loose teeth.  Right now she has none.  Some kids burn out around puberty or is it when they stop losing teeth?  I just think it might provide an entry way for infection which stresses the immune system.  I've read on other sites that people said their outbreaks happened after dental trauma or oral surgery.  Maybe there is a connection.

The doctor was very encouraging that this will go away. 

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #253 on: Thursday June 21, 2007, 06:40:49 AM »
I am so happy to report that my daughter's PLEVA is finally improving.  I took her off the Erythromicin.  She is simply in the sun everyday.   I only use a 30spf everywhere except her legs.  Her legs were especially hard hit by the PLEVAs so I let them have full sun late in the day.  The Plevas started to get better within a week.  She has gone from over a hundred horrible large lesions to a few smaller ones at any given time.  I know she can not sun indefinitely due to sun damage and winter, but I hope that soon the PLEVA will burn out.  The scars left behind  by the old lesions are still quite angry but I do see some fading.  The pox marks will take a lot longer. 

In the meantime, I will be pursue an ENT.  We went to see a top derm in Boston and I brought up the subject of tonsillectomy.  It is not a proven cure(although there is a case study)  for PLEVA but it is known to help some skin conditions.  My daughter gets lots of new ones whenever she has a cold/sore throat.  Strep is rampant in our schools during the winter months.   I also wonder about the timing of this disease.  In many children, it begins around the same time as they start to lose teeth.  My daughter's outbreaks began and were at their worst when she had several loose teeth.  Right now she has none.  Some kids burn out around puberty or is it when they stop losing teeth?  I just think it might provide an entry way for infection which stresses the immune system.  I've read on other sites that people said their outbreaks happened after dental trauma or oral surgery.  Maybe there is a connection.

The doctor was very encouraging that this will go away. 

That is really good news ! I'm glad to hear it is clearing up. That's interesting about the tonsillectomy, I was almost about to have mine removed, got so much tonsilitis when I was a kid but the doctor said if I had one more case then they would remove them, and I didn't.

I'm sure it will go away soon and you can live a happy life without this horrid PLC! :P

Regards,
PLC4ME

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #254 on: Friday June 22, 2007, 02:12:29 AM »
Angela, GalPal, and everyone,

Thank you so much for your information and encouraging words!  I so miss my doctor in Boston (Gellis - children's).  It is hard sometimes to live in an area where you have docs who have only read about PLC.  But thank goodness for skincell. 

Galpal, regarding the tonsillectomy, I had heard something a ways back about that, and theories that bacteria/viruses etc..  present in the body are triggering this PLC/PLEVA.  Is there anything more conclusive to this?  Is your doc willing to do this?  Was he the one who told you about this?  I think there were a couple of cases in Japan.  Please let us know what you find out. 

Angela, I feel so much better after reading your email.  Even though the summer improvement is upon us, and we are installing a pool, it is still there, and I find it frustrating at times (even though I don't let on to my daughter); she will be nine this summer, and it has been seven years now!  My old pediatric derm doc did say that it typically takes til puberty to clear.  (Still, nice to know there are other PLC/PLEVA kids out there, my daughter's age; if it takes forever to clear up, when she is a teenager, she can always have other PLC/PLEVA teenagers to correspond with through Skincell, and relate to.).

Thanks again, everyone.        J

Offline Angela7

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Re: Pityriasis Lichenoides Chronica
« Reply #255 on: Saturday June 23, 2007, 03:23:41 AM »
Hi all - my son had his tonsils and adenoids out when he was 4 (2 years after his first of countless outbreaks and now almost 4 years ago).  No change at all in his spots or the frequency of his outbreaks but the surgery did away with his sleep apnea and terrible snoring.  Certainly seems that many PLEVA sufferers have upper repiratory issues as well.  That recent interesting study that Jahan found lists upper respiratory infection as the leading illness immediately preceding the initial outbreak in the kid's retrospective study.  My son had a bd cold/ear infection right before his first outbreak.  My son still has respiratory issues - chronic cough variant asthma (meaning he gets a bad cough that can linger for weeks anytime he gets a cold but fortunately never any wheezing or breathing difficulties).  And yes indeed - each time he gets sick or under the weather he breaks out in spots - for him it has always been a clear connection as they are always present when he is sick.  My question has always been to the Drs. - does he get sick, immuno-compromised and the spots them come out or do the spots come out, thereby weaking his immune system such that he then gets sick?  I guess it is really a chicken and the egg question but they always go hand in hand.  Any thoughts??  On a brighter note, its great that the sun is helping us out - like Galpal's child, his spots are clearing up nicely - a very deep one on his chin line is closing up quickly thanks to the sun.  Take good care and thanks for the great input and info.   

Offline galpal

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Re: Pityriasis Lichenoides Chronica
« Reply #256 on: Monday June 25, 2007, 01:52:25 PM »
Hi Everyone,

I think I had the connection between colds/pleva outbreaks explained to me.  I brought my daughter to Boston Children's last week.  Since this is a t-cell disorder, HER reaction to any stresses, like a cold, immediately are seen through her skin t-cells.  When her immune system is stressed, it causes her skin t-cells to react.  No, the tonsillectomy is not a cure.  But since she is so hard hit over the winter months, it might decrease the outbreaks.  That's hard to measure.  The doctor said I will have to build a case for the tonsillectomy, it won't be performed for pleva alone.  I need to monitor her snoring, colds , etc. and be ready to act if the outbreaks get worse next winter.

 

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #257 on: Monday June 25, 2007, 02:21:04 PM »
Galpal,

Is your Dr. at children's Dr. Gellis?  (We used to go to him when we lived in Boston).  What did they give you for outlook/prognosis there?  Same thing as we have all heard?  Did they mention the puberty thing?  How old is your child and when did he/she get it?

Offline Gordo

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Re: Pityriasis Lichenoides Chronica
« Reply #258 on: Thursday June 28, 2007, 04:23:52 PM »
Im a newbie here, and in respect of my skin disease its heartning to read about others with the same, as with the rarety of it, i have never met anyone in real-life with the same. P.L.C. started for me when i was 18, it looked like septicimia, a mass of red spots on my inner arms, trunk, thighs, tops of feets etc. Unsure of what had caused this skin condition or even for many years what it was, i just put up with it. It was clinically diagnosed 4 years ago, and the *Dermo* put me on extremely strong anti-biotics for 3 months, combined with uva treatement once a week, i looked online at this time and saw that for some sufferers those treatments worked, however for me...they made no difference.

I am 37 this year...meaning 19 years with this disorder, its more of a coping process for me now, getting ph balanced body wash, using non-bio wash powder, and as has been mentioned earlier Palmers Cocoa-Butter cream applied after i wash...makes me smell like a big chocolate lol. I find the flakyness of the lesions scabbing and falling happens a lot more at winter, the trail of dead skin-cells left in my wake can be disconcerting, but...i have to put up with it. I had hoped i would grow out of it, or it would just go away but no. Today its mainly affecting the backs of my arms, legs, a little bit on my sides, tops of feet and ankles. I have learned to accept it, live with it, and hope that maybe one day some sort of a decent cure can be found for it, one that would work for all sufferers, i try the little tips i have picked up on the net, but am not a great lover of sunshine...so if that helps or not i am unsure in my case. For such a rare disorder i am also amazed at the amount of replies over the past couple of years on this thread, both sufferers and parents, and as i have said earlier...tis heartning to see. My hopes for those others like me is that they will recover, and on that journey, that various measures of prevention are helping. I will drop by from time to time, but what i will say is that my condition is at its weakest for many years...*fingers crossed*

Best wishes to all

Gordo x

bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #259 on: Thursday June 28, 2007, 05:49:58 PM »
Just to say Hi Gordo and welcome to skincell!
Bunnie