Author Topic: Pityriasis Lichenoides Chronica  (Read 553359 times)

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Offline Shauna

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Re: Pityriasis Lichenoides Chronica
« Reply #460 on: Tuesday August 12, 2008, 01:19:08 PM »
BLX42,

What is your skin condition?

As for my child - I have followed dr's orders as far as sunlight goes. I have had him in the sunlight whether at the pool or the beach almost everyday this entire summer. Yet, he is still not lesion free. His spots look better thanks to the sun but are not nonexistent. And, yes, I use sunscreen on him because the derm told me if he were to get burned, the PLC/PLEVA would look terrible. Burns are not good for anyone, especially anyone with a chronic skin condition. Plus, I do not want to increase his risk of skin cancer in later years.

As for the erythro - from what I have learned from the derm and read on my own, erythro has been proven a very safe and fairly effective treatment for PLEVA. It is not a cure; but, it keeps the lesions at bay. It helps cut down on inflammation. As for the diarreah (sp?), if my child were to display symptoms of stomach problems, the erythro would be stopped. My derm believes the erythro does help the PLEVA burn itself out. I am not sure on that one, but he seems to know a lot about the disease and has treated many cases of it. He says the disease can be stubborn and hang around for a while but that through these treatments - sunlight and erythro, it should go away eventually.

Believe me, this is my child, my 3 year old baby dealing with a potentially chronic skin condition. I am doing everything in my power to help his body rid itself of this disease. For now, all I can do is trust the doctor trained in dealing with skin conditions. If all I had to do was sit him in the sun everyday, I would do it. Unfortunately, it is not that easy. J, whose daughter has been dealing with this for years, lives in Florida. She has a pool in her backyard, and her daughter still has the skin condition. SHe has never been lesion free. So, it is not as simple as you may think to treat.

As for the tanning bed, he is 3 years old. He is not going to lie in a tanning bed long enough for treatment. And the light boxes the offer in derm offices are not recommended for him because of his age and risk factors i.e. burns, eye damage if he removes the goggles, skin cancer, etc.

Shauna


bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #461 on: Tuesday August 12, 2008, 01:25:08 PM »
Hi Blx,
Please note to anyone reading, that text underlined and made bold is to indicate that for which these tools are intended ie: to draw attention to, and must not be interperated as shouting or aggression.
I have IgA mediated Epidermolysis Bullosa Aquisita, and although the appearance of the disease is the same as linear iga and acts in the same way, it is a life threatening form because it also targets the collagen region as well as (in me) the base region of the epidermis, and therefore causes the epidermis to shift away from the dermis.
Normally EBA is IgG mediated, which therefore makes my condition very rare indeed. In 1993 there were only 2 recorded cases in the world, my understanding is that now there are about 24, but don't quote me.

With regard to your first link. I draw attention to this because you see this is a huge problem when reading articles. People read stuff and misinterperate what they are reading. Medical articles are usually specific to what they are referring to. It does not say what you quoted.ie:...
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"As with most other antibiotics, erythromycin and aztreonam are associated with a risk for developing Clostridium difficile–associated diarrhea that can range in severity from mild diarrhea to fatal colitis."
It does say , and I make the quotes here, please note in bold that which I wish to draw your attention to ...
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Certain Antibiotics Linked to Risk for Posttherapy Clostridium difficile–Associated Diarrhea
On January 5 and 22, the FDA approved safety labeling revisions for a macrolide antimicrobial and a monolactam antibiotic, respectively, to warn of the risk for C difficile–associated diarrhea (CDAD).

Updated product monographs include those for erythromycin particles in tablets (PCE Dispertabs, Abbott Laboratories, Inc); erythromycin ethylsuccinate for oral suspension (EryPed, Abbott); erythromycin succinate (These are NOT the same Erythromycin) oral suspension, granules for oral suspension, and tablets (EES, Abbott); and aztreonam injection for intravenous use (Azactam, Bristol-Myers Squibb).
Use of these agents can alter the colon's normal flora, leading to overgrowth of C difficile and subsequent release of toxins A and B that contribute to the development of CDAD. Nearly all antibiotics have been implicated in CDAD, which may range in severity from mild diarrhea to fatal colitis.
Please note regarding that last high-lighted sentence; that while this is indeed true, that dose relation must come into this evaluation, and antibiotics given to children are very closely monitored, and erythromycin is regarded overall, the safest.
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Erythromycin and aztreonam are indicated for the treatment of infections caused by susceptible strains of designated microorganisms. Erythromycin has an antimicrobial spectrum similar to that of penicillin and is often used to treat respiratory tract infections, sexually transmitted diseases, and acne. Aztreonam has strong activity against susceptible gram-negative bacteria, including Pseudomonas aeruginosa.
Not erythromycin.
I do see your point however, and I agree with these conditions one is between a rock and a hard place with regard to treatment. None are a cure, control is the keyword. As to what I personally would do regarding if it were my child, I would seek out the best derm there is, the one most highly renowned, and get his opinion on both forms of treatment. Erythromycin has excellent antinflammatory effects and as Plc and pleva are inflammatory conditions, then I suspect that is the reason for using it, it is also regarded the most safe.
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If you could trade all those drugs for a few minutes a day inside a tanning booth ... in exchange for a complete remission .
Well of course this does not apply to my situation as sunlight exascerbates my condition, and I never therefore walk about in the sun. As I have said on here before I feel physically sick on hot days, and itch unbearably.
With regard to the UV light therapy and my child, there is no way I would agree to it UNLESS under strict medically controlled circumstances, and if it was highly recommended to do so. The risk is in developing melanoma later in life, a risk which can be reduced by being under the supervision of the dermatology dept. There is absolutely no way, I would do this off my own bat, especially concerning a child.
Here are a couple of links concerning positive outcomes in the use of controlled Narrowband UVB (311 nm, TL01) phototherapy for pityriasis lichenoides. Please tell me if you cannot view the articles. I will then have to post it.
http://www3.interscience.wiley.com/journal/117983957/abstract
http://www3.interscience.wiley.com/journal/120089610/abstract
warnings and concerns......
Here are a couple that I took the quotes from in my previous post and couldn't find yesterday, please note the conclusions at the end ...please let me know if you can't view them.
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We conclude that narrowband UVB phototherapy is a useful and well-tolerated treatment for children with severe or intractable inflammatory skin disease, but concerns remain regarding long-term side-effects.
http://www3.interscience.wiley.com/journal/118610981/abstract
http://www3.interscience.wiley.com/journal/119217001/abstract
http://www3.interscience.wiley.com/journal/118520891/abstract
This one concerns the rates of adverse effects on the use of narrow-band UVB and PUVA.
http://www3.interscience.wiley.com/journal/117988886/abstract
If you have been taking your child to a sunning booth in order to treat this disease, off your own bat, and with no medical supervision,  then you are putting your child at risk.
Again, regarding misinterperation of the reading from a medical point of view....
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No randomized controlled trials of the use of medications have been performed in Mucha-Habermann disease. Since the disease tends towards self-resolution, evaluation of treatments without adequate controls cannot result in useful recommendations. A number of open trials have reported success with light therapy and oral medications.

Clearly there are no trials specific to plc or pleva, but there are open trials. Like most everyone else regarding their specific condition, they fail to realise that research encompasses all the variations of the pathogenisis of the types of skin conditions. For eg. Plc and pleva come under the heading of Inflammatory Papulosquamous Disorders, which include.....
Psoriasis (Psoriatic arthritis) - Parapsoriasis (Pityriasis lichenoides et varioliformis acuta, Pityriasis lichenoides chronica, Lymphomatoid papulosis) - Pityriasis rosea - Lichen planus - Pityriasis rubra pilaris - Lichen nitidus.
Then there are a whole list of various Bullous (blistering) conditions and so on.
You can note throughout this forum for example that many of these skin conditions are treated with the same medications, that is because the pathogenisis of the disease may be similar and follow a similar pathway.
I understand Plc and pleva are self-limiting in that it will eventually disappear, and like most other abnormal immune responses can remit spontaneously, but for a percentage the condition can carry on into adulthood, flaring and subsiding along the way.
http://www.beautyassist.com/skin-disorders/Pityriasis%20Lichenoides%20Chronica.html
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PLEVA synonyms (other names, same meaning)=
Pityriasis Lichenoides et Varioliformis Acuta (Mucha-Habermann), Mucha Habermann Disease, Acute Guttate Parapsoriasis.
There may be just a few episodes and complete resolution within 6-8 week, but lesions may also recur over many months or even years.

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The natural tendency of the disease is to remit spontaneously, but some cases may wax and wane over years. Disease duration may be longer in adults.
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PLEVA lesions may evolve into lesions of PLC
http://www.emedicine.com/derm/topic334.htm
http://www.bad.org.uk/patients/leaflets/lichenoides.asp
I yet again apologise for the long post.
Bunnie
« Last Edit: Tuesday August 12, 2008, 02:14:49 PM by bunnie »

bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #462 on: Tuesday August 12, 2008, 01:27:21 PM »
Well said Shauna, my point exactly!
Bunnie

Offline Shauna

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Re: Pityriasis Lichenoides Chronica
« Reply #463 on: Tuesday August 12, 2008, 01:31:03 PM »
Thanks Bunnie! Although your points are backed by research; mine are simply backed by a mom loving her baby and trying to do what is right for him.

Shauna

bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #464 on: Tuesday August 12, 2008, 01:51:56 PM »
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mine are simply backed by a mom loving her baby and trying to do what is right for him.
And you are Shauna.  :hug: I know you have gone to some trouble to find the right person to handle Dylans treatment, and that is not only the right thing to do, it is the best thing to do, because whatever treatment is being given for your Dylan, it is based on scientific knowledge, and not some out-dated form of anecdotal treatment, based on a hypothesis, that has no scientific data whatsoever. Nor are you treating Dylan with your own ideas as to treatment, but under supervised controls by people who have spent years studying, and who have attained a rigorous level of excellence in order to receive their credentials in this specific field of medicine.
fondly bunnie

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #465 on: Tuesday August 12, 2008, 04:33:47 PM »
Thanks Bunnie! Although your points are backed by research; mine are simply backed by a mom loving her baby and trying to do what is right for him.

Shauna

All what points? What research? Bunnie is making the same points I did, with a lot of links, scientific terminology, and digressions.

As Bishop Berkeley said, "We have first raised the dust, and then we complain that we cannot see."

Regarding research, there are "no randomized controlled trials of the use of medications" for PLEVA/PLC. Bunnie argues that open trials or experience from other skin diseases with similar symptoms should count, but in fact, they don't, not as research. If they did, homeopathic medicine would be respectable.

By the way, if you have read my recent posts, you will see that I did not take the tanning booth route "off my own bat" ... but at the suggestion of a dermatologist. I had previously gone to the "best guy in the city" ... in two different cities ... as well as other guys. I had been given e-mycin and tetracycline for years, to the point that I developed severe sensitivities to them. I had been given the expensive, too-infrequent UVB treatments by "the best guy in the city" and suffered burns as a result. I had been given internal steroids by a lazy derm who didn't bother to read the literature to see that they were ineffective. I had been experimented on by another dermatologist with various expensive creams.

Finally, after 15 years ... after giving up ... my wife's dermatologist saw a lesion and told me that UV light was the only effective treatment. I asked her if she could schedule me for some UV treatments, and she said, "Since it is ordinary sunlight that cures it, you can just go to a tanning salon."

That day marked the end of my PLC, which was the stubborn, ulcerative kind.

Ultimately, Bunnie is just stating an opinion ... that she wouldn't do anything to treat PLEVA/PLC unless a doctor recommended it. Which is fine. That's what I did. Get a second opinion. Get a third.

bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #466 on: Tuesday August 12, 2008, 08:23:47 PM »
hi blx,
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All what points? What research? Bunnie is making the same points I did, with a lot of links, scientific terminology, and digressions.
What else then, are those links but fact based reference to research? That is specifically what they are!
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Bunnie is making the same points I did,
Indeed I am not, but simply, literally, pointing out and high lighting to you where you have misread the data, from the quotes you left.
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Regarding research, there are "no randomized controlled trials of the use of medications" for PLEVA/PLC. Bunnie argues that open trials or experience from other skin diseases with similar symptoms should count, but in fact, they don't, not as research.
You are so wrong with that statement BLX , with all sincere due respect. I am not arguing about it , nor am I saying they should count, but the fact  they do! Simply again showing that it is your misunderstanding as to how clinical trials and research are conducted, and I further gave explanation as to why that is the case.
I explain again what you are failing to understand......You are seeing plc and pleva as specific, when in fact they come under the heading of Inflammatory Papulosquamous Disorders, therefore the pathogenisis is similar; add to that, the genetic predisposition then, it is common sense that research encompasses the combination of the genetics and the pathogenisis of this type of disease. The disease you have manifesting is simply the pathogenic result of the abnormal immune response to this hypersensitivity in you. It can and will in fact be a different hypersensitivity to something in each one of you that triggered theses genes into play.
Where are the digressions in my post? The points I have made all are related in some way.
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Ultimately, Bunnie is just stating an opinion ... that she wouldn't do anything to treat PLEVA/PLC unless a doctor recommended it. Which is fine. That's what I did. Get a second opinion. Get a third.
I do not pass opinions ever, unless specifically asked which you did! I give fact based reference for consideration, not my opinions, but that of researched subjects, by qualified experts in the field of medicine. When asked for my opinion I do not take it lightly but offer an educated opinion on the subject, in which I am profoundly interested, I also clearly state "this is my opinion" if giving one without being asked.
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that she wouldn't do anything to treat PLEVA/PLC unless a doctor recommended it
Regarding autoimmune diseases and Atopic diseases indeed I would not, especially when very young children are involved.
Bunnie
« Last Edit: Tuesday August 12, 2008, 08:37:11 PM by bunnie »

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #467 on: Tuesday August 12, 2008, 10:06:59 PM »
hi blx,
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All what points? What research? Bunnie is making the same points I did, with a lot of links, scientific terminology, and digressions.
What else then, are those links but fact based reference to research? That is specifically what they are!
Quote
Bunnie is making the same points I did,
Indeed I am not, but simply, literally, pointing out and high lighting to you where you have misread the data,
Quote
Regarding research, there are "no randomized controlled trials of the use of medications" for PLEVA/PLC. Bunnie argues that open trials or experience from other skin diseases with similar symptoms should count, but in fact, they don't, not as research.
You are so wrong with that statement BLX , with all sincere due respect. I am not arguing about it , nor am I saying they should count, but the fact  they do! Simply again showing that it is your misunderstanding as to how clinical trials and research are conducted, and I further gave explanation as to why that is the case.
I explain again what you are failing to understand......You are seeing plc and pleva as specific, when in fact they come under the heading of Inflammatory Papulosquamous Disorders, therefore the pathogenisis is similar; add to that, the genetic predisposition then, it is common sense that research encompasses the combination of the genetics and the pathogenisis of this type of disease. The disease you have manifesting is simply the pathogenic result of the abnormal immune response to this hypersensitivity in you. It can and will in fact be a different hypersensitivity to something in each one of you that triggered theses genes into play.
Where are the digressions in my post? The points I have made all are related in some way.


Let me give you an example. I said "If you could trade all those drugs for a few minutes a day inside a tanning booth ... in exchange for a complete remission" ... And then you said "Well of course this does not apply to my situation as sunlight exascerbates my condition" That is a digression. I know you have a different condition from PLEVA/PLC. I began the sentence with "if". Also, it is not a very logical digression, since you later make the argument that our disorders are very similar.

Please tell me specifically where I have misread the research you cite. I read it once, and then I went back and read it again. In every case, UV worked far better than the drug regimens.

Also, there is a huge difference between randomized controlled studies and open studies. Please don't tell me about my "misunderstanding as to how clinical trials and research are conducted." I have a scientific education and I know very well how they are conducted. Sometimes sloppily. Often haphazardly. Always occasionally ... when it comes to rare diseases like PLEVA/PLC.

Why did you become so upset when I asked why parents would send their children outdoors, in an uncontrolled environment, covered in sunscreen and partially by bathing suits, rather than give them controlled all-over UV treatments? It is a legitimate question.


Offline lindadiane

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Re: Pityriasis Lichenoides Chronica
« Reply #468 on: Tuesday August 12, 2008, 10:30:41 PM »
Whoa everyone. I think Dylan's mom is, of course, feeling frustrated and overwhelmed and angry. I have been through all of that myself over the last 6 years. The truth is that having anything impact your health and wellness sucks! No one wants bumps, or blisters, or itching, etc. I hold a nursing license and ask my derm new questions all the time. The truth of the matter is that they DO NOT KNOW. They simply do not. My internist said this inflammatory stuff is still so undisovered. So it's like we are all on Mars and they need to find their way to us. I say try what you feel is safe and comfortable. What works for one person does not work for another. We know that to be fact. The tanning booth did nothing for me, the doc's light is helping. Tetracycline did nothing, the Z pack seems to be working. I too was freaked about the complications...I am NOT a drug person - do not even like to take Tylenol! What helps the most is no stress and floating in my pool in the sun. But it's summer and that will be gone soon. I will be starting a new Z pack and one of the warnings for this and the Emycin is sun sensitivity...not as much as the tetracyclines. I have not had that reaction but that does not mean someone else will not. So the drug companies have to list it to voer their ass. What is sad is there is no magic bullet. There is no known cure and there are days that I cry and other days that I think this could be something a whole lot worse. I have a friend just diagnosed with diabetes, my daughter's friend died of leukemia when she was 13. I have several friends with breast cancer, several died from colon cancer and one had a near fatal heart attack. Life is short, enjoy each other, share the knowledge and follow your gut keeping in mind there is no magic cure.

bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #469 on: Tuesday August 12, 2008, 11:11:00 PM »
OK , some crossed wires here I think,
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Let me give you an example. I said "If you could trade all those drugs for a few minutes a day inside a tanning booth ... in exchange for a complete remission" ... And then you said "Well of course this does not apply to my situation as sunlight exascerbates my condition" That is a digression. I know you have a different condition from PLEVA/PLC. I began the sentence with "if". Also, it is not a very logical digression, since you later make the argument that our disorders are very similar
No I do not, read it again, you are misreading my posts now!   Not ours  ie mine and yours , but Inflammatory Papulosquamous Disorders, which include.....
Psoriasis (Psoriatic arthritis) - Parapsoriasis (Pityriasis lichenoides et varioliformis acuta, Pityriasis lichenoides chronica, Lymphomatoid papulosis) - Pityriasis rosea - Lichen planus - Pityriasis rubra pilaris - Lichen nitidus. I gave another example of how these disorders are grouped together because of their similar pathogenisis, ie Bullous disorders.( not to plc but in bullous disorders )

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Please tell me specifically where I have misread the research you cite. I read it once, and then I went back and read it again. In every case, UV worked far better than the drug regimens.

I was not referring to the articles that I cited at all, but to the quotes that you cited to make your case. Your interperatation of those quotes that you made was incorrect, and I simply reposted them and high lighted the areas that you had misinterperated.
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I have a scientific education and I know very well how they are conducted.
If that is the case then you would know for sure that research in disease that follow a similar pathogenisis, come under a main heading, as I have pointed out above , and add to that if they are of a genetic predisposition then that groups them even more specifically. For an eg  If you have an autoimmune condition, (there are over 80 diseases which are autoimmune conditions all manifesting differently, affecting skin, blood organs etc.) but the underlying cause is the same, ie mutated genes predisposing you to having an abnormal immune response. Find a drug capable of altering the transcription of the specific genes involved, and the resulting pathogenisis will be resolved . Do you get my point in giving you these examples?
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Sometimes sloppily. Often haphazardly. Always occasionally .
Sorry I simply do not agree at all with that statement.

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Why did you become so upset when I asked why parents would send their children outdoors, in an uncontrolled environment, covered in sunscreen and partially by bathing suits, rather than give them controlled all-over UV treatments? It is a legitimate question.

It was not me, shauna answered that,  her son is very young, and where children are concerned one should follow the advice of a qualified person.

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If you could trade all those drugs for a few minutes a day inside a tanning booth ... in exchange for a complete remission"

I did  answer that for myself stating the case as is, however as an adult in your position then probably indeed I would try it, but we were not talking about an adult but children, at least I was. There is good evidence that it helps, but even then, I would not just just take it upon myself but have it under the strict controls of a medical professional at the hospital, where it is carried out here. Here in the UK our Health care is free. Our mind-set (for want of a better word) is  totally different in comparison to other countries on health care.
Bunnie
« Last Edit: Tuesday August 12, 2008, 11:19:55 PM by bunnie »

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #470 on: Wednesday August 13, 2008, 01:42:02 AM »
I probably shouldn't get involved, but I have to defend BLX42, because, as a mother dealing with this for eight years and having talked with specialists, I see his point.  My derm said that the only thing that works best, consistently, is ambient sunlight.  He mentioned, perhaps, down the road, if my daughter as a young adult, is still dealing with this, she might consider the "light box" treatment.  Sometimes, erythro etc.. works, most of the time, not. 

With all due respect, Bunnie, your information is interesting, and informative, but frankly, you lose me most of the time, because you sound like a doctor.    Are you a doctor by the way? 

BLX42, as far as the sunblock question, when we lived up in the northeast, in the summer, I practically never put sunblock on my daughter, or if I did, it was very sparing (tops of shoulders, etc..).  We moved to Florida, and the UV index here is in excess of 10.  I really do not want her to burn.  Her upper legs (above the knees) tend to be more severly affected by PLC, so I tend not to really sunblock this area (unless we're going to the beach).  I am not sure where in the US you live, but here, even with SPF 30, one still gets some colour.  These are my reasons for using sunblock on her, although I don't slather it on too thickly.  My son, on the other hand, is fairer, has no skin issues, and I am more careful to cover him (he still gets colour though!). 

J

I can see my daughter going your route, if ever this thing does  not clear up on its own.  I will council her to wait til she's an older teen etc..  It sounds like you probably would have cleared up eventually, even if you didn't tan.  (20 years!).  I support and agree with your approach.  I have tried a round of erythro on my daughter.  No avail.  I have tried zpack on her (no avail yet).  A specialist in Boston Children's told me if erythro etc..  doesn't work, the best treatment is to "wait it out, moisturize and get some ambient sun".  Sounds like what your doc said. 


Offline Shauna

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Re: Pityriasis Lichenoides Chronica
« Reply #471 on: Wednesday August 13, 2008, 03:04:55 AM »
Yikes! I did not realize everyone was getting so upset.

J, thank you for your input. You and your daughter have been dealing with this condition for a while and always have valuable advice to offer. Thanks. You are right, as far as what I have seen for Dylan, sunlight is the best treatment.

BLX,

Sorry. I never meant to come across angry or upset. Your earlier comment said something about just getting the kid into the sun, leaving off sunscreen, and staying away from drugs. All that sounds great. But, when you are a mother of a 3 year old with a rare chronic skin condition knowing nothing about it except what the derm says, you do what he says. Dylan was covered from the neck down when he first broke out. I did not find out what he had until 1 month later. That was terrifying. The first derm we say thought he had Langerhan's Cell Histiocytosis. I thought he was dying. It was scary. When we found out what he really had, I went to another derm who knew what he was talking about. He said he had treated PLEVA before and erythro worked along with plenty of sunlight. So, that is what we are doing. I agree that it is not my first choice to have my son on antibiotics indefinitely. But, I wanted to give it a try before knocking it. As for the tanning bed, I just am not sure if that is ok for a 3 year old right now. I never sunscreen him unless at the beach or pool. Just playing outside, he goes suncreen free.

Anyway, I really appreciate all the advice. It does sound like pure sunlight is the best bet with this condition. I hope Dylan can get off the erythro soon. I will let you all know how the app't goes next week.

Shauna

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #472 on: Wednesday August 13, 2008, 04:06:18 AM »
Shauna, J, lindadiane, and anyone else dealing with this crappy disease ... My point in posting was to provide some experience from 20 years of PLEVA/PLC, because I wish someone had cared enough to do so when I was 16.

lindadiane, thanks for stating the obvious. The doctors DO NOT KNOW much of anything about this disease. The drugs they prescribe are untested for PLEVA/PLC. It is possible that they work, but just as possible they are just causing placebo effects.

J, you seem to be doing what the doctor said ... plenty of sun. I recommended the light box or sunbed approach because most of my worst blisters and ulcers in the summer were under my bathing suit. There is another reason. You can control the exposure for safety reasons. (BTW, I have no evidence that my 20-year bout wouldn't have cleared up without the tanning salon. There was a six year period there when I got UV every other day.)

Shauna, you have a tough set of problems with Dylan. What I said to J about under the bathing suit and controlled exposure goes for him too. Depending on the fairness of his skin, it may take only five minutes or so of controlled exposure, and a tanning bed would not present any burn hazards to a child, while allowing your supervision. I WOULD put sunscreen on him when he is "just playing outside." That's where some of the most dangerous sun exposure occurs.

bunnie, A lot of people react negatively to mention of tanning salons and tanning beds because they are encouraging dangerous and unnecessary sun exposure among young adults. They are. But they are a godsend to PLEVA/PLC sufferers in the USA. We have no free health care here like you have in the U.K. UV treatments in a doctor's office cost thousands of dollars a year ... and that's if you have health insurance.

My larger point: All these treatments have risks and side-effects. Patients and parents need to consider these risks against benefits. If antibiotics do not work (and there is only ambiguous evidence that they do), then there is no justification for running the risks they present. Why take a risk for little or no benefit? Sunlight used in moderation presents some well-known risks, but the few good studies that exist show its benefits to be superior to other treatments.

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #473 on: Wednesday August 13, 2008, 04:21:49 AM »
I can see my daughter going your route, if ever this thing does  not clear up on its own.  I will council her to wait til she's an older teen etc..  It sounds like you probably would have cleared up eventually, even if you didn't tan.  (20 years!).  I support and agree with your approach.  I have tried a round of erythro on my daughter.  No avail.  I have tried zpack on her (no avail yet).  A specialist in Boston Children's told me if erythro etc..  doesn't work, the best treatment is to "wait it out, moisturize and get some ambient sun".  Sounds like what your doc said. 

Actually, my (last) derm said to get my butt to a tanning salon. There is a problem with the "wait it out" approach. This disease can rapidly turn into an ulcerous mess that leaves deep permanent scars like a bad case of chickenpox. This can happen suddenly, within a single week. I speak from experience. Also, the emotional trauma of a little girl putting up with PLEVA/PLC in middle school or high school ... I don't like to think about it.

Offline Nick

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Re: Pityriasis Lichenoides Chronica
« Reply #474 on: Wednesday August 13, 2008, 08:10:10 AM »
Please note that this thread appears to be taking an aggressive turn, whether it is intended or not.

The thread is now being monitored by the Mod Team and may be locked if this continues.

bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #475 on: Wednesday August 13, 2008, 10:25:23 AM »
 
Quote
Are you a doctor by the way?
No
I know that light therapy is the best for plc and pleva, and I gave links to reports on that, under "concerning positive outcomes" I then gave links to reports which give concerns over using it on children under the age of 12. The rest is self explanatory.
Bunnie

Offline galpal

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Re: Pityriasis Lichenoides Chronica
« Reply #476 on: Wednesday August 13, 2008, 02:39:06 PM »
Wow!  Haven't checked in for a bit but let's relax!!  I've always enjoyed the positive info on this website and I rely on it to boost MY spirits when my daughter is having a bad episode (her spirits are fine!).  I love Bunnie's research (very informative) but I do agree with BLX.

1.  Sunlight is the ONLY thing that worked for us.  As fair, Irish type (lots of freckles), I'm very careful to only let her have a light, light tan (if you can call it that) per her derm from Children's Hospital in Boston.  We definitely will try the tanning booths when SHE becomes self-conscious during her winter episodes.  That is okayed by her doc, also.  When I mentioned phototherapy, he shrugged and said to go to the local tanning booth.

2.  I've not used the antibiotics in over 14 months because they just didn't work but I would be willing to give it another go if this winter is bad.   Sounds like some have had success with a Zpack regimen.   

3.  My daughter's PLEVA has turned into dime sized ulcers.  They have left large chicken pox like scars.  Three on the face.  Many on her body.  She'll be in the tanning both faster than a wink next time I see it go that direction.  J is right, it happens very quickly. 

4.  Good luck everyone.  Let's keep the thread going......



 

Offline Shauna

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Re: Pityriasis Lichenoides Chronica
« Reply #477 on: Wednesday August 13, 2008, 04:12:44 PM »
Hi again,

Just wondering if anyone has used the tanning booth with a young child - and in young, I mean 3 years old or younger. When I approached the subject of the light box with our derm, he looked at me as if I were crazy. He said he has never recommended it to any of his younger patients. But, he gave me a referral to the laser center anyway just to check it out. I set up an app't there with Dylan, and of course, only one doc had ever seen PLEVA before, and it was in his residency like 20 or so years ago. He did not recommend it because of the risk of harm to little ones; like, if he took the goggles off, his eyes could be damaged; if he moved around, he could get burned, etc. But, I know the light box is different than a tanning bed. I wonder if that would be safer and considered an alternative. Any ideas? I have only been in a tanning bed once in my life and swore to never go back. I just did not like it. But, I do remember having to wear protective eye coverings. That is my main concern with Dylan. He is too little to understand to keep those on and stay still.

Oh, and as for everyone who has tried or is trying a type of antibiotic like erythro, tetra, etc., have the spots gotten better at all? I noticed most of the comments were that it did not work, etc. But, I understand that it is not to be used as a cure. It is used for anti-inflammatory purposes and helps cut down on the large ulcer sores. That is how it was explained to me by the derm. Just like some use tetra for acne for years; same sort of deal with the PLEVA.

Thanks and sorry again for any upsetting or "angry" comments I may have mistakenly posted,

Shauna
« Last Edit: Wednesday August 13, 2008, 04:15:03 PM by Shauna »

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #478 on: Wednesday August 13, 2008, 05:59:58 PM »

3.  My daughter's PLEVA has turned into dime sized ulcers.  They have left large chicken pox like scars.  Three on the face.  Many on her body.  She'll be in the tanning both faster than a wink next time I see it go that direction.  J is right, it happens very quickly. 


I found that the best results were from consistent sunlight exposure. You might want to put a little sunscreen on the scars on her face. Scars tend to darken when you get older (no research available, just experience).

I know sunlight exposure is hard with a Type 1 tanner like your daughter. Just be careful, but not too careful. Aim for a light pink that produces a white spot when you press on it. If you press on the pink skin and the pink comes right back, you've gone too far.

My wife is between Type 1 and 2. She has to be very careful. I'm about a Type 4, which is odd because I have very fair skin and blue eyes ... but hey, who said these genes were linked. With a light tan I find it hard to get any browner unless I hit the pool around midday. Two hours after midday, I can sit around without sunscreen and get nothing, and I am at latitude 38. When I worked outdoors in Florida, you would have thought I was made of mahogany. I was 20 at the time and my PLC went into complete remission.

Here's a website with some tanning info, I make no claims about its accuracy (I don't want to start an exchange!).

http://www.pinkfridge.com/hab_tanning/skin-types.htm

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #479 on: Wednesday August 13, 2008, 06:46:20 PM »
Hi again,

Just wondering if anyone has used the tanning booth with a young child - and in young, I mean 3 years old or younger. When I approached the subject of the light box with our derm, he looked at me as if I were crazy. He said he has never recommended it to any of his younger patients. But, he gave me a referral to the laser center anyway just to check it out. I set up an app't there with Dylan, and of course, only one doc had ever seen PLEVA before, and it was in his residency like 20 or so years ago. He did not recommend it because of the risk of harm to little ones; like, if he took the goggles off, his eyes could be damaged; if he moved around, he could get burned, etc. But, I know the light box is different than a tanning bed. I wonder if that would be safer and considered an alternative. Any ideas? I have only been in a tanning bed once in my life and swore to never go back. I just did not like it. But, I do remember having to wear protective eye coverings. That is my main concern with Dylan. He is too little to understand to keep those on and stay still.

Oh, and as for everyone who has tried or is trying a type of antibiotic like erythro, tetra, etc., have the spots gotten better at all? I noticed most of the comments were that it did not work, etc. But, I understand that it is not to be used as a cure. It is used for anti-inflammatory purposes and helps cut down on the large ulcer sores. That is how it was explained to me by the derm. Just like some use tetra for acne for years; same sort of deal with the PLEVA.

Thanks and sorry again for any upsetting or "angry" comments I may have mistakenly posted,

Shauna


Sorry gang to keep quoting the whole message as a block. I don't know how to break it up.

Shauna, I never perceived your tone as angry, so no apology necessary. To answer your questions:

1. No, I've never had any response from antibiotics, steroids or creams.

2. About a three year old following directions like "don't take the goggles off" ... as a father of boys, I have to say: It depends. I trained one of my sons to climb safely when he was three, and let me tell you, the sight of a three-year old 30 feet up in a tree is unnerving, but he never fell. Ever. Even off a stool. And his climbing behavior escalated over the years. Another son was different about calculated risks. He wouldn't take them. Ever. So in my experience, a three-year-old can understand safety instructions. That doesn't mean he will. You know your son.

I don't see how you could get burned on a tanning bed. As for the eyes, you could get Dylan a pair of cool goggles, the kind that filter UV completely and turn the room purple. Put them on with a tie-strap around his head, so he can't easily take them off. Put him in a tanning bed where you can watch him like a hawk. Give him a safety reminder every time he gets in. Don't forget to wear goggles yourself. Watch the exposure time and ramp it up slowly.

Also, put sunscreen on him when he goes out to play. Overexposure can happen on an arm or a face, not just a back or a chest when you're at the beach. The only time I ever burned was a faulty sunscreen application that left some of my skin uncovered when I was a kid.