Author Topic: Pityriasis Lichenoides Chronica  (Read 580516 times)

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Offline Shauna

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Re: Pityriasis Lichenoides Chronica
« Reply #480 on: Thursday August 14, 2008, 11:14:55 PM »
BLX,

Hi again. So, I am pretty interested in the tanning bed alternative. We were approved for the light box treatment through our insurance co. so could go that way without much cost out of pocket. But, was it you who said the tanning bed was better than light box? There is something with UVB or UVA??? Not sure. If that was you, explain please.

If we do decide to go the tanning bed route, I have a few questions for you...

Where do I get the cool goggles that wrap around the head and completely block the rays for Dylan?

Should I be concerned about cleanliness? I have heard stories of people contracting various fungal infections and such from tanning beds. Maybe I should clean it myself before Dylan enters.

He tans easily and quickly and turns very brown. You can see from his picture, he has dark hair and eyes. He has yet to burn in the sun. So, maybe start with 5 minutes for a couple weeks then up to 10? I probably would not go past 10 for him. He just needs to keep a light tan to keep the bumps minimal and from turning into ulcers. He is already tan from the beach - all except where his bathing suit was.

Anyway, let me know what you think about all that - tanning bed or light box, etc.

I really appreciate the advice.

Shauna


Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #481 on: Saturday August 16, 2008, 02:35:14 AM »
BLX,

Hi again. So, I am pretty interested in the tanning bed alternative. We were approved for the light box treatment through our insurance co. so could go that way without much cost out of pocket. But, was it you who said the tanning bed was better than light box? There is something with UVB or UVA??? Not sure. If that was you, explain please.

If we do decide to go the tanning bed route, I have a few questions for you...

Where do I get the cool goggles that wrap around the head and completely block the rays for Dylan?

Should I be concerned about cleanliness? I have heard stories of people contracting various fungal infections and such from tanning beds. Maybe I should clean it myself before Dylan enters.

He tans easily and quickly and turns very brown. You can see from his picture, he has dark hair and eyes. He has yet to burn in the sun. So, maybe start with 5 minutes for a couple weeks then up to 10? I probably would not go past 10 for him. He just needs to keep a light tan to keep the bumps minimal and from turning into ulcers. He is already tan from the beach - all except where his bathing suit was.

Anyway, let me know what you think about all that - tanning bed or light box, etc.

I really appreciate the advice.

Shauna



If your insurance will pay, that's great. I am not an expert on light boxes, because I've never seen one. I used a stand-up box at the tanning salon or a horizontal bed at my health club (until the lawyers shut it down).

You asked a question about safety for Dylan, who is three. I suggested a tanning bed because you can keep an eye on him (as long as the eye is shielded). Again, if Dylan can follow ordinary safety instructions, it doesn't really matter. I would repeat those instructions every time he uses it, just like they do with adult factory workers. Begin each session with a safety lecture. Go with the light box if you trust his judgment, or if you can keep an eye on him somehow.

You can get some cool goggles via internet shopping. Just google "tanning goggles" ...

I said nothing about UVA or UVB, but I googled a commercial bed vendor website and here's what I found: Commercial tanning salon equipment in the US must have about five times the UVA as natural sunlight, per FDA regulations, so as to promote tanning. I don't know what ratio of UVA/UVB a medical light box uses.

Since Dylan's a dark tanner like me, I suspect your biggest problem may be increasing the tanning time. The more tan you are, the less sunlight gets through your melanin to the deeper layers of the skin. Since they have no idea why sunlight controls PLEVA/PLC, this might require increasing the time as he gets tan. I really don't know. One other person on the board told me that five minutes a day in a commercial booth worked. What I did was gradually increase my time as I got darker. I guess we have to experiment ourselves because there's almost no drug company or government money for research. (The curse of a rare disease.) At a certain level of exposure, he will probably have no bumps. Mine used to clear completely above the suit, then come back when winter arrived.

As for cleaning it, I think the UV light would kill almost anything on the surface. However, there are diseases that are spread by gym mats like MRSA going around ... so wiping the surface down with a Clorox wipe would give you true peace of mind. Nothing survives bleach. You can also make up about a 15% bleach solution in a jar and dip a rag in it. That's how I disinfect things around my house.

Offline lindadiane

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Re: Pityriasis Lichenoides Chronica
« Reply #482 on: Saturday August 16, 2008, 07:33:55 AM »
Hi Shauna:

I use the light box at the derm's office once a week. I am only in there for 1 minute 4 seconds. You start low and work your way up. I have also tried the tanning beds. You only get UVB with the box not the UVB and UVA you get with the beds. Only using UVB is suppose to cut down on the damaging rays. The one advantage I see for you is that you can stand in the room with him as long as you have eye protections on (they give or sell special protectors) and he will only be in there for 30 seconds, rather then minutes. My derm is treating several kids at his office, one of which is one of my students (she has very bad ecxzema). Also, he can stand up and turn slowly so he will be busy rather then just having to lay there.  It's fast and easy and I notice improvement every time I go. You can try each one and see which you prefer.

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #483 on: Saturday August 16, 2008, 08:08:25 PM »
That sounds like excellent advice. I think the short time period is good, because most three year olds have an attention span of at least a minute. You're really trying to get the part under the bathing suit and boost the exposure he gets at the beach. Experiment.


Offline lindadiane

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Re: Pityriasis Lichenoides Chronica
« Reply #484 on: Sunday August 17, 2008, 10:17:55 PM »
Another suggestion...have him get the lights in his tidy whities. I go in my panties with no bra and roll my underwear way down. The boxes are usually in a private room in the doctor's office so it'snot likes he's parading around other people.  Get him some special spiderman underpants, or whatever character he loves and make those his special "light day underwear". The best thing would be a thong but I don't know what type of emotional damage that might cause! Explain to him why it is important for him to keep the goggles on and then get him a treat after the light treatment, ice cream, whatever. Also, you will need goggles and sunscreen for yourself while you stay in the room with him. My derm sells the goggles for 3 bucks. I feel it's safer at the doctor's office  because the people administering the lights are trained nurses, they know to go up gradually, they know the exact frequency, they should even have the protective gear there. In Los Angeles most of the tanning salons are run by teenagers and I always worry whether or not they know what they are doing!

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #485 on: Monday August 18, 2008, 02:09:52 PM »
I don't want to make anyone uncomfortable, but I thought the concept of a light box was that Dylan could expose the area under his swim trunks. As a parent who has been through the toddler years, I can testify that most three-year-olds have little concept of modesty. I doubt that a thong would do any kind of emotional damage. He would probably go running down the hall to show it to strangers. I am no expert in psychology, but I doubt that simple nakedness would do any emotional damage. This is a medical setting, and a medical problem. Being naked in a light box will prepare Dylan for those adult visits to the hospital where the flimsy cotton gown has no back.

Offline lindadiane

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Re: Pityriasis Lichenoides Chronica
« Reply #486 on: Monday August 18, 2008, 05:37:07 PM »
Actually his penis will have to be covered for protection. That is why the doctor's have you wear underwear. So perhaps a thong it is! With the light since it is intense and covers your body you will notice improvement on all bumps...it's systemic.

Offline Shauna

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Re: Pityriasis Lichenoides Chronica
« Reply #487 on: Monday August 18, 2008, 06:12:39 PM »
Wow! Thanks for all the advice. I actually have to take my youngest (7 month old daughter) for a well visit tomorrow. Then, Dylan has a follow-up visit with the derm on Wednesday. So, I know my derm is opposed to tanning beds, so I thought I would ask the opinion of the regular pediatrician as to what she thinks of tanning beds v. light box therapy. I am also going to talk with the derm a little more in depth about the light box therapy. I just want some dr.'s opinions before I decide. If I do go the route of the light box, we have already been approved by insurance and have met with the derms at an office close to where we live. They have never had a 3 year old patient or seen PLEVA, but there is always a first.

And, as for the protective gear for his genital area - is that because the rays could harm him say in later years when trying to conceive a baby? If so, will just ordinary underwear protect him much?

And, I agree with BLX that I am wanting to use the beds to get where the sun does not - under his trunks.

Thanks. I will let you all know what we decide.

Shauna

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #488 on: Monday August 18, 2008, 06:52:21 PM »
UVB doesn't penetrate beyond the skin, so protecting future generations is not the reason. UVB is responsible for most of the tanning response, and burning, which is why sunscreens target UVB. lindadiane is probably just concerned about burning his most sensitive skin. PLEVA/PLC generally doesn't appear in the genital area, but it does go after the hips and buttocks. I don't know what you can rig up to cover the genital area, but I think a washrag, a little athletic tape and some imagination might work.

Offline lindadiane

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Re: Pityriasis Lichenoides Chronica
« Reply #489 on: Tuesday August 19, 2008, 06:07:14 AM »
The genital skin is much more sensitive and delicate then arm skin, or even skin on your tush, so it is more prone to burning. I am pretty sure that's what the docs are concerned about....plus, would you want to have a burn there - ouch!! Yes, a junior jock strap would probably be a great solution...and no mental trauma - the major league uses them!

Offline bhmars

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Re: Pityriasis Lichenoides Chronica
« Reply #490 on: Thursday August 21, 2008, 11:53:58 PM »
Hi Everyone, I have been reading the post and thought I would let you all know that I went for my check up today to the derm. and I asked her about tanning beds.  She calls them "community light therapy" ;) instead of tanning beds. I thought that was funny!  She also said she thinks that it is perfectly fine for me to use one as long as I do not get burned.  She suggested a slow increase in time each time I went.  i.e....2 mins. 4min. 6 mins. until I could be in the "community light therapy box" for no longer than 7 or 8 mins. at a time.  I am not using it to get tan but  it sure does help the way mine looks!  I have a question for anyone,  does anyone get biopsies regularly when they go for their checks?  I am wondering because my derm. did not think it was necessary?
 

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #491 on: Saturday August 23, 2008, 12:30:03 AM »
Hi Everyone, I have been reading the post and thought I would let you all know that I went for my check up today to the derm. and I asked her about tanning beds.  She calls them "community light therapy" ;) instead of tanning beds. I thought that was funny!  She also said she thinks that it is perfectly fine for me to use one as long as I do not get burned.  She suggested a slow increase in time each time I went.  i.e....2 mins. 4min. 6 mins. until I could be in the "community light therapy box" for no longer than 7 or 8 mins. at a time.  I am not using it to get tan but  it sure does help the way mine looks!  I have a question for anyone,  does anyone get biopsies regularly when they go for their checks?  I am wondering because my derm. did not think it was necessary?
 

I only got one biopsy. I think once they've determined that you have PLEVA or PLC, there's no need for further biopsies.

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #492 on: Sunday August 24, 2008, 01:32:04 PM »
Hi bhmars,

My understanding from my docs is that it is only necessary to rebbiopsy if the PLC/PLEVA starts to look different.  In my case, if the PLC spots get larger (the individual spot) than a "quarter" (about 1 inch) in diameter, and if they look extremely angry (or rather, more than normal).  In all these years of PLC, I've never had this happen.  When we were first diagnosed, we did have a couple of biopsies to confirm, but that was it.  Some suggest rebiopsing every few years to rule out any CTCL/MF, but this is so rare; and besides, if you start to see your PLC look weirder than normal, you'd probably bring it to your doc's attention anyway.  Incidentally, there are so many PLC lesions clustered together everywhere, that at times (particularly in the less sunny months), they can look like one giant one.  But if you look at it against the light, you can see that it is many, verses one individual one. 

Hope that helps,

J

Offline Shauna

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Re: Pityriasis Lichenoides Chronica
« Reply #493 on: Monday August 25, 2008, 11:58:31 PM »
Hi everyone!

I had Dylan to the dermatologist for his check-up last week. He did not recommend the tanning bed at all but was ok if I decided to take him for light box therapy. Although, I am having a difficult time finding an office comfortable working with a 3 year old. But, I also spoke with Dr. Spraker, another pedi derm, who works at Emory about Dylan. She saw him once when I was seeking out a second opinion. I was ready to start taking Dylan to her office (45 minutes away) for light box treatments. She called to ask why I was driving so far. After explaining everything to her, she disagreed with Dr. Caputo (our regular derm) and told me just to find a tanning salon nearby. She said with the limited exposure he would be getting, she saw no greater risk of getting skin cancer as if he just went outside daily. She said the tanning bed would control the lesions as well as potentially help the disease burn out. Then, I might be able to stop the erythro. She told me to start out slowly - twice a week 3 to 5 minutes and increase to no more than 10 minutes 2 or 3 times a week.

Anyway, I think that is what I am going to do. I found some of the tanning goggles with the strap on-line and ordered them. I also think I may just let him keep his little underwear on in the bed. He does not have many lesions in that area. He mostly just needs to get his upper legs exposed as well as the undersides of his arms.

He is starting to break out again. We have been back from the beach for 2 weeks now and have not been able to be outside at the pool much. The weather has been cool and rainy. But, I just wondered if that is pretty much the norm - to be pretty clear and than all of a sudden, flare up. He has some pretty large and red lesions that just appeared in the past couple days. They don't seem to bother him, but they are quite "angry looking."

Thanks for all the advice from everyone. I do think we are going to try the tanning bed for a while though and see what happens. I just cannot bear to see him covered in red lesions for the entire fall and winter months again. It is hearbreaking. If the sun actually helps the disease burn out, I am praying the tanning bed will do the same and maybe help him to be rid of this by next summer. Any thoughts? J, especially. I know your daughter is out in the sun a lot and has had to deal with this for years. Do you think the sun helps burn it out or it just needs to run its course?

Anyway, again, just looking for thought, advice, anything since most of you have had this or have a child who does.

Thanks,

Shauna
« Last Edit: Wednesday August 27, 2008, 03:02:08 AM by Shauna »

Offline Shauna

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Re: Pityriasis Lichenoides Chronica
« Reply #494 on: Wednesday August 27, 2008, 12:29:42 AM »
Ok, so none of the tanning salons near my home will allow me to put Dylan in their beds due to his age. So, that idea is out the window. I may have to call my derm and find an office comfortable doing light therapy on a 3 year old

And just wondering...Bhmars told me that her derm said PLEVA messes with the immune system during outbreaks. Do any of you know anything about that and why it would be so only during outbreaks? My derm keeps saying Dylan's immune system is fine. I find that hard to believe though.

Shauna

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #495 on: Wednesday August 27, 2008, 05:41:35 PM »
Ok, so none of the tanning salons near my home will allow me to put Dylan in their beds due to his age. So, that idea is out the window. I may have to call my derm and find an office comfortable doing light therapy on a 3 year old

And just wondering...Bhmars told me that her derm said PLEVA messes with the immune system during outbreaks. Do any of you know anything about that and why it would be so only during outbreaks? My derm keeps saying Dylan's immune system is fine. I find that hard to believe though.

Shauna

Sorry for the bad news about the tanning salons. The good news (maybe) is that PLEVA or PLC never messed with my immune system.

You could get Dylan one of those European bathing suits and go to the beach. Or just get him a Speedo. The other alternative (expensive, I know, but it depends on your financial situation) is to buy a tanning box or bed of your own. In any case, keep trying. I wish someone had clued me in to the UV therapy when I was first affected.

Offline lindadiane

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Re: Pityriasis Lichenoides Chronica
« Reply #496 on: Thursday October 02, 2008, 12:09:28 AM »
How's everyone doing? I finished 6 months of Z packs and I am improved but not cured and with the weather changining I have been itchy. My doc wants me to go to UCLA with him one day and have a bunch of different doctors look at me...sounds like fun, not!

Offline Looknhelp

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Re: Pityriasis Lichenoides Chronica
« Reply #497 on: Thursday October 02, 2008, 02:01:07 AM »
Hey Everyone,
  Well, I ended up here after doing hours upon hours of research for my husband...we finally got a diagnosis of PLC and PLEVA after 2 weeks of waiting.  I would love to talk with someone through email ([email address removed]) about your own experiences with this.  I pretty much had done all of the research before his diagnosis, when it was presumed he had this, so I knew most of what the doctors told us when it was confirmed.  I have a feeling that this is somehow related to psoriasis, though I could be wrong.  I am currently doing some research myself via internet to seek out psoriasis treatments to try and see if there is any help with that route.  My husband has been experiencing these breakouts for about 1 month, and it started off as 4 "bugbite" looking spots on his right foot.  It has now spread up his legs (though not the inner thigh), onto his arms, and only a couple on his side (between stomach and back).  Some of these look very different from others, and I'm told that the "V" in Pleva stands for various forms.  I found a q&a website that links this with Herpes 7, though I haven't been able to find much of anything on that particular thing.  I did however find that herpes 7 is one of the only in the herpes family that has unknown contraction....so, we're right back at square one...answering questions with questions.  This can get very frustrating.  :-[  I would very much like to have him try the tanning bed or light box, but he can't presently because of being on tetracycline, which you can't use with sunlight!  Is there anyone that has had any progress with any topical treatments applied directly?
« Last Edit: Thursday October 02, 2008, 11:56:37 AM by totalfolly »

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #498 on: Thursday October 02, 2008, 06:34:48 PM »
Hey Everyone,
  Well, I ended up here after doing hours upon hours of research for my husband...we finally got a diagnosis of PLC and PLEVA after 2 weeks of waiting.  I would love to talk with someone through email ([email address removed]) about your own experiences with this.  I pretty much had done all of the research before his diagnosis, when it was presumed he had this, so I knew most of what the doctors told us when it was confirmed.  I have a feeling that this is somehow related to psoriasis, though I could be wrong.  I am currently doing some research myself via internet to seek out psoriasis treatments to try and see if there is any help with that route.  My husband has been experiencing these breakouts for about 1 month, and it started off as 4 "bugbite" looking spots on his right foot.  It has now spread up his legs (though not the inner thigh), onto his arms, and only a couple on his side (between stomach and back).  Some of these look very different from others, and I'm told that the "V" in Pleva stands for various forms.  I found a q&a website that links this with Herpes 7, though I haven't been able to find much of anything on that particular thing.  I did however find that herpes 7 is one of the only in the herpes family that has unknown contraction....so, we're right back at square one...answering questions with questions.  This can get very frustrating.  :-[  I would very much like to have him try the tanning bed or light box, but he can't presently because of being on tetracycline, which you can't use with sunlight!  Is there anyone that has had any progress with any topical treatments applied directly?

They know nothing whatsoever about the cause of this disease. Repeat ... nothing whatsoever. That is the bad news. Mine lasted for two decades, but it follows various paths. It gets better and then worse. My doctors tried tetracycline, cortisone, and various expensive creams with no effect. (Sometimes there seems to be an improvement and then it gets worse, so no one is sure if these drugs do anything at all.)

Now for the good news. Ordinary sunlight is usually a very effective treatment. My PLEVA/PLC would clear up very rapidly (within a month) when I went to the pool every day in the summer. Light boxes are just a substitute for when you can't use sun. My first dermatologist insisted on tetracycline treatments, which made sun impossible. I had to wait over a decade before a knowledgeable dermatologist clued me in about sunlight. (She told me the way they discovered this was that patients returning from a beach vacation would be cured except for the areas under the bathing suit.)


Offline Looknhelp

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Re: Pityriasis Lichenoides Chronica
« Reply #499 on: Wednesday October 08, 2008, 07:52:16 PM »
BLX,
  Did you have any luck at all with the tetracycline?  My husband has been on it for almost 2 weeks and there may be a very, very slight improvement, but not enough to consider it working so far.   A friend gave us some tanning bed passes and we are thinking that we may try this next week, after going off of the antibiotic.  I am praying that something will work.  My husband is dealing with this well, mostly, but has days that his self esteem is really taking a hit.  He doesn't want people to look at him like there is something wrong with him.  We feel we have good doctors, but they admitted that there isn't much to do.  They advised against the tanning, which comes as no surprise, seeing as they are dermatologists.  But in low doses, I don't think it will be much worse than the sun itself.  We don't want to just sit and do nothing.  I'm planning to make some major changes to our diet next grocery shopping trip, as I have began to feel like what you put in your body affects everything that goes on with it.  I am also planning to try some pharmaceutical quality vitamins and detox products (a PA suggested this quality instead of regular ones you buy on the shelf, because of fillers like sawdust in them) to see if there is any help with this.