Author Topic: Pityriasis Lichenoides Chronica  (Read 270492 times)

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Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #440 on: Monday July 28, 2008, 12:27:52 PM »
Hi Shauna and All,

My daughter Likealways been an avid vit d milk drinker.  I understand that vitamin D is perhaps antiinflammatory, however, as bunnie pointed out, studies are varying.  (I read a very interesting article in Scientific American about it, but can't remember all the details to give a good explanation).  UV radiation alone helps healing with lots of things ( and of course, as we all know, the opposite effect of too much sun).  Don't worry, Shauna about the white spots.  (aka hypopigmentation).  My daughter gets these (looks like a leopard in reverse!  Alrightg, slightly exagerated, but you get the point).  It takes, in my experience, several weeks perhaps or so to even out.  The pigment (melanin) is deficient in a previously inflamed area, and needs to replace.  I would take the flattened whitish patches to an inflamed red spot any day.  Years ago I asked my doc about the vit D deficiency thing, and he said that there was no connection between vit d deficiency and PLEVA/PLC. 

I empathize with the family thing Shauna, and have dealt with similar comments.  It has been going on for years now, so they are peetering out, but I expect they'll start up again as my daughter approaches puberty.  Like "Is it gone yet?".  Trust me, when it is gone, I will be practically shouting it out for the world.  Well maybe not, I wouldn't want to jinx a remission. 

California girl on zpack...(sorry, can't remember your name!).  I am encouraged that your zpack seems to be having at least some positive effect, and that your husband even noticed your back looks good.  I think it is harder to tell if it is making a true difference, if I look at it every single day, so I am just trying to look only once in a while.  I know that any results will take a few weeks for me to see, since the PLC lesions last quite alot longer than the PLEVA lesions.  Your experience is very encouraging for me.  How many weeks and how many rounds have you been on zpack?

Take care,

J

bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #441 on: Monday July 28, 2008, 11:14:34 PM »
I just wanted to add a PS to that. If you go to the link I left it is stating that vit D is known to be deficient in any disease, not just autoimmune disease, and it is now thought to be a part of any disease process. There is much in the media here concerning supplements etc. warning people not to doctor themselves.

Offline lindadiane

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Re: Pityriasis Lichenoides Chronica
« Reply #442 on: Tuesday July 29, 2008, 03:35:43 AM »
Hi, it's Linda. I'm on my 2rd round. I take them every three weeks.  They work 6 - 10 days after you complete them. So I take them for 5 days. Stop for 14 (give my body a little breather there) and then start again. So about every 19-21 days. When I take the Z pack they (plevas) pop and peel like crazy and about 5-7 days after I finish I have less bumps, less scars and lots of healing. However, I do notice an inflammation with certain foods...and I do have allergies - but chocolate makes it worse (itchy) and wheat (so I now try to stay after from breads) which is also helping the size of my tush! I'll keep you posted. You ladies do so much research - it's wonderful! Thanks!!

Offline wisconsinpatient

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What works for me Re: Pityriasis Lichenoides Chronica
« Reply #443 on: Tuesday July 29, 2008, 06:16:03 PM »
My first neck-to-toes episode was while I was at university: muggy weather, too much sun, stress, and little sleep. Within the first 48 hours of a family trip to Florida, the spots also jump up again. Other than a small, brief flare up from too much gardening, this is how I keep it under control in the summer: thoroughly dry hands and feet, run dehumidifiers and air conditioning, wear long sleeves and a hat. Also helpful: a blood test ($100-$200) for food sensitivities, which is more accurate than a food diary. Avoiding my top two allergens--two of my favorite foods that I ate daily my whole life--frees up the body to deal with the pityriasis lichenoides chronica, which stays mostly away when I have the air on and avoid a lot of daily sunshine. A cheap steroid skin cream prescription (Triamcinolone, less than $10 a season) is stronger than over-the-counter remedies and okay for even my very sensitive skin. Scent free Glycerin soap for $2 at the grocery store, generic body wash, and Magick Botonicals (alerg.com) shampoo work for me, too. But whatever products I use, I need to avoid muggy, sunny conditions, and get 9 hours sleep, or the spots return, splotch, and peel in unbeatiful fashion. Good luck and blessings to all who struggle with this.

Offline Shauna

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Re: Pityriasis Lichenoides Chronica
« Reply #444 on: Thursday July 31, 2008, 02:27:35 AM »
So you are saying that you think there is definitely a connection with PLEVA and what you eat - allergies, etc.? I have been contemplating getting my son an allergy test or blood work to pinpoint what he may be allergic to. His PLEVA does flare up at times and I would LOVE to know what causes those flare ups. I suppose I could make an app't with an allergist and see what he/she suggests as far as a patch test or just blood work. When he first broke out, I was working with an alternative medicine doc who recommended pretty much taking away everything in his diet - no dairy, wheat, gluten, citrus, etc. I was shopping at the whole foods stores and making everything frome scratch. I still have him eating healthy but have added in more foods for him. The gluten free bread was absolutely horrible. He does break out more when I allow him to drink milk, which he loves. The alternative doc also had him taking a bunch of supplements that I was not comfortable with. So, I stopped all that and took him to a pediatric derm whom we have been working with now for almost 7 months. I love him. I just wish he would be willing to talk to me more about different options or treatment plans. He is pretty stuck on the EES and sunlight. He always says, "no known cause; no known cure." Yeah, thanks doc.

Anyway, just wondering if anyone else out there has ever been tested for allergies or if anyone else has noticed a flare up with foods.

Thanks,

Shauna

Oh, we are leaving for the beach (Ormond beach in FL) for 7 days. I hope the sun and salt water will help the PLEVA "burn itself out" as MJ said happened to her son. Wish us luck.

Offline bhmars

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Re: Pityriasis Lichenoides Chronica
« Reply #445 on: Thursday July 31, 2008, 01:10:18 PM »
Hi Everyone I haven't written on the forum for a long time but, I have been reading all the new post.  My PLC looks so much better since the weather is warm and I go out in the sun.  However, I am not free of spots and in fact seem to have 20 or so new spots that started this week.  Hopefully it will not get worse but inevitably, I am sure by November the spots will start popping up everywhere!  I am going for my 6 month appt. to my derm soon so I will be asking about the Z pack and anything new she might be aware of.  Does anyone get a biopsy every 6 months just to make sure it hasn't changed?  I usually have to ask to have one and my derm. usually doesn't seem like it is necessary but i have read that it is important to make sure it hasn't turned into anything else.  So, I insist that I have one and she always does it for me.  Am I being ridiculous for feeling like I want it monitored?  Anyhow, I am so glad to hear that many of the young ones are having less spots since it is summer and who knows, maybe it will continue through the winter and it's on the way to being gone!   

Offline BLX42

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Re: What works for me Re: Pityriasis Lichenoides Chronica
« Reply #446 on: Thursday July 31, 2008, 07:21:18 PM »
My first neck-to-toes episode was while I was at university: muggy weather, too much sun, stress, and little sleep. Within the first 48 hours of a family trip to Florida, the spots also jump up again. Other than a small, brief flare up from too much gardening, this is how I keep it under control in the summer: thoroughly dry hands and feet, run dehumidifiers and air conditioning, wear long sleeves and a hat. Also helpful: a blood test ($100-$200) for food sensitivities, which is more accurate than a food diary. Avoiding my top two allergens--two of my favorite foods that I ate daily my whole life--frees up the body to deal with the pityriasis lichenoides chronica, which stays mostly away when I have the air on and avoid a lot of daily sunshine. A cheap steroid skin cream prescription (Triamcinolone, less than $10 a season) is stronger than over-the-counter remedies and okay for even my very sensitive skin. Scent free Glycerin soap for $2 at the grocery store, generic body wash, and Magick Botonicals (alerg.com) shampoo work for me, too. But whatever products I use, I need to avoid muggy, sunny conditions, and get 9 hours sleep, or the spots return, splotch, and peel in unbeatiful fashion. Good luck and blessings to all who struggle with this.

I think avoiding UV is a mistake. The one piece of solid research on this miserable disease is that UV light works. Yes, "muggy sunny conditions" may make the spots appear worse. Mine (PLEVA and PLC) got worse when I was sweating on muggy days, but that included the spots under clothes where no sun penetrated. Try instead a tanning salon, where you can expose all your skin in the privacy of an air-conditioned booth. Modulate your time in the booth so that you have a faint pink glow after exposure, but not a burn (advice which goes for all sun tanning). Most tanning salon personnel can help you figure out how much time to spend in the booth. Everyone tans differently.

The safest strategy is to get a light tan and maintain it, summer and winter. If you don't tan at all, then get that faint pink glow over and over.

I endured PLEVA and then PLC from age 16 to age 35. It comes and goes for no particular reason. Counting spots and ulcers and trying to figure out patterns is scientifically sketchy. Because they appear and disappear spontaneously, you can make a lot of false correlations and drive yourself batty. Doctors will give you all kinds of creams and pills, and the medicine may appear to work because the number of spots goes down. Then the spots get worse, or the PLEVA changes to PLC. Did the medicine stop working? Or was the medicine completely ineffective? I spent thousands of dollars on that junk before a new dermatologist informed me that the ONLY scientifically solid knowledge was that sunlight was an effective treatment, and the way they stumbled on THAT was observing patients who returned from beach vacations with spots in the bathing suit area but not in the tanned area. "Medical science" is truly a contradiction in terms. She saved me thousands of dollars more. Or rather, I spent my money on tanning salons instead of doctors, with excellent results.

I went from "keeping it under control" to "looking good ... and feeling good". And the only time I got any spots was when I neglected my UV regimen.

Sunlight (UV) works. Theories exist, but no one knows why for sure. Vitamin D? It may not be the vitamin D from sunlight, but the production of vitamin D by skin cells. So taking vitamin D supplements doesn't work, but getting vitamin D from UV light does work. Or vitamin D may have nothing to do with it, except to improve your mood. You can come up with your own theory. Theories aside, UV light works. Properly and regularly used, it will eliminate the spots.

About tanning: There is a range of skin types. My skin tans easily and is hard to burn, which actually made it harder to get the right amount of UV. My wife's skin tans very slowly and burns easily. Yet she manages to get a nice tan in the summer without burning. To attack PLEVA/PLC, you have to use common sense and avoid burning while getting that pink glow to happen.

Perhaps Bunnie has some research she can cite, but my dermatologist and the research I've read indicates that proper tanning without burning is pretty safe. As for wrinkles in later life, I am now 55 years old and have only a few laugh lines around the eyes. And I've been getting a nice tan every summer since I was a kid. However, I've only gotten one sunburn in my entire life.

I should add that I have no financial interest in the tanning salon business, and I think young people who over-tan and burn are idiots. But moderate sun exposure over several days or weeks to produce a light tan is probably quite safe. And when you are dealing with a nasty and disfiguring disease like PLEVA/PLC, the small risk of moderate UV exposure is nothing compared to the risk of drug side-effects and/or the disease.

Peace, and get well.


bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #447 on: Friday August 01, 2008, 12:34:00 AM »
Hi ladies
Quote
I endured PLEVA and then PLC from age 16 to age 35. It comes and goes for no particular reason. Counting spots and ulcers and trying to figure out patterns is scientifically sketchy. Because they appear and disappear spontaneously, you can make a lot of false correlations and drive yourself batty. Doctors will give you all kinds of creams and pills, and the medicine may appear to work because the number of spots goes down. Then the spots get worse, or the PLEVA changes to PLC. Did the medicine stop working? Or was the medicine completely ineffective? I spent thousands of dollars on that junk before a new dermatologist informed me that the ONLY scientifically solid knowledge was that sunlight was an effective treatment, and the way they stumbled on THAT was observing patients who returned from beach vacations with spots in the bathing suit area but not in the tanned area. "Medical science" is truly a contradiction in terms. She saved me thousands of dollars more. Or rather, I spent my money on tanning salons instead of doctors, with excellent results.

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It comes and goes for no particular reason.
This is what all autoimmune and atopic diseases do, wax and wane, idiopathically = spontaneously and for no known specific cause.
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Counting spots and ulcers and trying to figure out patterns is scientifically sketchy
I thoroughly agree, (and so does my derm with regard to counting spots in any skin disease, lesion patterns in some diseases are important) This is often done by some derms to see if the disease is reducing whilst on medication, but as you say it is a very unreliable way of evaluating disease activity.
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Doctors will give you all kinds of creams and pills, and the medicine may appear to work because the number of spots goes down. Then the spots get worse, or the PLEVA changes to PLC. Did the medicine stop working? Or was the medicine completely ineffective?
You have explained what the meds do exactly, they control it!  That is the key word. Unfortunately the predisposition in ever having these abnormal immune responses be they autoimmune or atopic, is a part of you and always will be.

It is a certainty that uv light can help many skin conditions, but for some (with other conditions) the sun actually makes some others worse, even exciting the condition as in my own case.

My recent post regarding vitD. http://www.skincell.org/community/index.php/topic,23891.msg298508.html#msg298508

I am just looking through a load of info here on uv light for this condition, and the most recent I have found so far on UV light is this ...

Accepted for publication:
28 December 2007
ABSTRACT
Background/purpose: Narrowband (NB) UVB (NB-UVB) phototherapy has recently demonstrated high levels of efficacy and tolerability in a variety of skin diseases. The purpose of the present study was to assess the efficacy of NB-UVB phototherapy in the management of pityriasis lichenoides (PL).

Methods: The therapeutic response in 31 PL patients (23 pityriasis lichenoides et varioliformis acuta; PLEVA, eight pityriasis lichenoides chronica; PLC) treated with NB-UVB phototherapy between 2000 and 2007 was assessed.

Results: NB-UVB treatment led to a complete response (CR) in 15 out of 23 PLEVA patients (65.2%) with a mean cumulative dose of 23 J/cm2 after a mean number of 43.4 exposures and a partial response (PR) in eight patients (34.8%) with a cumulative dose of 15.6 J/cm2 after a mean number of 32.3 exposures. NB-UVB treatment led to CR in seven out of eight PLC patients (87.5%) with a mean cumulative dose of 18.4 J/cm2 after a mean number of 45.8 exposures and PR in one patient (12.5%) with a cumulative dose of 9.1 J/cm2 after a mean number of 19 exposures. Relapses occurred in four PL patients within a mean time period of 6 months.

Conclusion: NB-UVB therapy is an effective, safe and practical alternative treatment modality for the management of PLEVA and PLC.

I have a couple of others concerning the results in children , but one was 2003 ,and this one was concerning other skin diseases in children and both in fact raised similar concerns.
Quote
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.
yet another states it should only be used on children when there has been poor response to other treatments.
bunnie
PS sorry I didn't realise it was so long!

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #448 on: Friday August 01, 2008, 02:02:49 PM »
BLX42, thanks for the helpful information!  My daughter got it when she was 2 and just turned 10.  (just PLC version). I am a little confused about your ages.  You said you got it at 16 til the age of 35.  Did it completely disappear in your mid thirties?  Or, do you still see occassional spots and that is why you lightly tan?  How extensive was it at its worst (age too), and how extensive was it compared to when you were a teenager verses when you were in your mid thirties?  Thanks for the info. 

J

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #449 on: Friday August 08, 2008, 05:57:43 PM »

Results: NB-UVB treatment led to a complete response (CR) in 15 out of 23 PLEVA patients (65.2%) with a mean cumulative dose of 23 J/cm2 after a mean number of 43.4 exposures and a partial response (PR) in eight patients (34.8%) with a cumulative dose of 15.6 J/cm2 after a mean number of 32.3 exposures. NB-UVB treatment led to CR in seven out of eight PLC patients (87.5%) with a mean cumulative dose of 18.4 J/cm2 after a mean number of 45.8 exposures and PR in one patient (12.5%) with a cumulative dose of 9.1 J/cm2 after a mean number of 19 exposures. Relapses occurred in four PL patients within a mean time period of 6 months.

Conclusion: NB-UVB therapy is an effective, safe and practical alternative treatment modality for the management of PLEVA and PLC.


Thanks for the study bunnie.

If it read this right, the PLEVA and PLC patients that went through the whole UV treatment had a complete response (CR) and those who went through the partial treatment had a partial response (PR). Not surprising. That was my experience.

I think the tanning booth route is better and cheaper then the derms who charge a fortune for the same service. As for treating children with UV, remember this is sunlight ... Are we growing mushrooms, or children? Many derms will not approve something for children that may get them sued if any skin cancer develops later in life. And there are a lot of sun-phobic people as a result. But it takes a lot of sun exposure and actual sunburns to significantly raise the risk of skin cancer. And what about the risks of all those drugs? A little common sense says that mild sun exposure resulting in a light tan is a safe and effective alternative to drugs that don't work very well. PLEVA/PLC is a nasty disfiguring disease, and sunlight (UV) is a safe treatment that works about 100% of the time.

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #450 on: Friday August 08, 2008, 06:18:15 PM »
BLX42, thanks for the helpful information!  My daughter got it when she was 2 and just turned 10.  (just PLC version). I am a little confused about your ages.  You said you got it at 16 til the age of 35.  Did it completely disappear in your mid thirties?  Or, do you still see occassional spots and that is why you lightly tan?  How extensive was it at its worst (age too), and how extensive was it compared to when you were a teenager verses when you were in your mid thirties?  Thanks for the info. 

J

Sorry to hear about your daughter. The good news is, if she takes the UV treatment route, she'll have a nice tan throughout her teen years.

To answer your question, I am in my 50's now, and the PLC is completely gone, except for scars. I got PLEVA overnight at age 16, which turned to a bad case of PLC within a few months. I tried all the treatments (including cortisone) with no real result, except it was much better in the summertime. In my late 20s, it was just a few ulcers (about 10 in winter, 2-3 in summer) at a time. When I was 30, a derm I was seeing for something else told me about sunlight and the research. She also told me it was ordinary sunlight I should use, not "narrow band UV" pitched by some derms. So I went to the local tanning salon. It worked completely. Amazingly. From then on, until I was about 36, I only got ulcers when I neglected the tan. About then, they ceased forever. (I had young children after that and didn't get a chance to go to the tanning booth ... but the PLC didn't reappear.)

However, I still try to keep a light tan, because it makes me feel good and I think it's healthy.


Offline Shauna

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Re: Pityriasis Lichenoides Chronica
« Reply #451 on: Saturday August 09, 2008, 02:13:40 AM »
J,

I was just wondering how your daughter was doing this summer. I think you live in Florida and was wondering if your daughter's lesions disappear in the summertime with the sun and possible beach swimming. We are actually on vacation in Ormond Beach in Florida right now, and Dylan's skin looks pretty amazing. We have been here 6 days and had him in the ocean everyday. I don't know if it is a combination of the salt water and sun or just the sun, but he looks great. I wish we could live here and have him out all the time. I mean, Georgia is nice and sunny most of the time; but, if we lived by the beach, that would be great.

Anyway, I was just wondering if your daughter's skin cleared in the summer months. I am hoping that come fall/winter, Dylan's spots will have decreased to only a few in places. Last year fall/winter was when he first got PLEVA, and he was completely covered. From what I understand, each outbreak should be less and less as the disease waxes and wanes. I think I could deal with it better if he only has like 10 or so lesions at a time as opposed to 100's. The other woman who has been writing who broke out at 16 - her story sounds promising. The number of lesions went down until she was lesion free.

Anyway, best to all,

Shauna

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #452 on: Sunday August 10, 2008, 12:55:22 PM »
Hi Shauna,

Glad to hear a week at the beach is helping!  We are on the east coast of Fl, just south of where you were.  (Melbourne).  We put a pool in last fall.  This summer, she has had a fair bit of pool use (3 times a week).  We do sun block because the sun is so intense here.  We go to the beach maybe 2-3 times in the summer.  (I am actually going today, because we have visitors in town!).  (I would probably go more, but don't need to since we have the pool).  Her skin clears up significantly, with a light tan.  (And of course, hypopigmentation).  Probably, if we didn't sun block, I would see a lot more improvement.    She is, however, never PLC free, unfortunately.  But, it goes from hundreds (particularly on upper legs/trunk/upper arms) to dozens.  But they are alot more discrete, smaller, etc... I find after a day at the beach, the salt/sun, her skin actually looks a little more reddened.  Just like after swimming in the pool.  She showers, rinses, moisturizes, and the next morning, her skin looks so much better.  She has never gotten a sunburn (her skin isn't that type, plus with the sunblock).  However, it is the PLC spots themselves that look more reddened.  I have also noticed this phenomenon after a hot or cooler shower.  How is Dylan doing? 

Even in the areas where she doesn't have any conspicuous spots, her skin tends to be dry and flaky, that is why we have to moisturize after showers, etc..  Even her ears and her nostrils and eyes will get slightly flaky, unless I put vaseline.  Hope it helps.  Let me know about Dylan. 

Sincerely,

J

Offline Shauna

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Re: Pityriasis Lichenoides Chronica
« Reply #453 on: Monday August 11, 2008, 12:47:48 AM »
J,

Thanks for the info. I am sure the pool has been a big help for you all. We eventually would like a pool in our yard; but, with 4 little ones 5 years old and under, we are waiting on that.

Dylan's skin did look worse the first two days at the beach. It was red and irritated. But, after that, the spots started clearing and kept looking better and better. He still has some though. I am afraid he will have more by the end of fall. I had hoped he would be clear by summer's end. But, I guess we will be dealing with it for a while as you have been with your daughter.

Anyway, thanks for all your advice and information. I will keep you informed of Dylan's progress. We see the derm again next week. Dylan's erythro dosage was cut to 6 ml once daily. I think he will probably cut it more afer this next visit. He is trying to taper him off completely to see how his skin does. I am almost tempted to visit with a holistic medicine doc once he is done with the erythro...if the spots start reappearing again. Have you ever tried any of that. (Bunnie, I know. I have already gone down that route, but I just feel like there has to be something else to help his body over this). I will only do that if the lesions start coming again full force and he is off the erythro.

Shauna

bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #454 on: Monday August 11, 2008, 11:58:45 AM »
Hi Shauna,
well you already know my advice on that route, I think you would be making a huge mistake. I am basically thinking of Dylan being the recipient of this kind of treatment. How could you know if anything prescribed by this holistic approach would set off the whole thing again? If it did break out again and you took Dylan, how would you know if Dylan had a hypersensitivity to something prescribed for him, and could cause it to flare really badly?  Do they do blood tests in the same way, I don't know?
Ask your derm about it Shauna, at least hear what they say about it. At least the treatment Dylan is now getting is under tight controls, there is proper data concerning every aspect of the treatment he is receiving. (this doesn't apply to all medical treatments of course, some of us have been the guinea-pigs to help create the data on much rarer diseases.) The same cannot be said for alternative medicine, it is nothing but a series of anecdotal reports and hypothesis.
Regards Bunnie

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #455 on: Monday August 11, 2008, 05:47:23 PM »
Let me ask a dumb question. If your kid's spots start clearing up at the pool or the beach, why put sunblock on the kids whenever they go? Why put them on antibiotics (erythro) that can cause sun sensitivity? Why bemoan the fact that the spots go from a few dozen in the summer to hundreds in the winter?

If sunlight cures the PLEVA/PLC, why not just treat them with moderate, all-over UV light?

Please believe that I am very sympathetic to the plight of anyone dealing with this disease. I just don't understand.

bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #456 on: Monday August 11, 2008, 09:28:04 PM »
Hi Blx.
Quote
Why put them on antibiotics (erythro) that can cause sun sensitivity?
That isn't correct. Not all antibiotics cause sun sensitivity or photosensitivity. Erythromycin does neither as far as I am aware. However the main *Tetracycline* does cause sunsensitivity, and Doxycycline, photosensitivity.
With regard to the UV light. Although it is undeniable that this does help plc and pleva, and indeed many other skin conditions, the worry is in any side effects which may not appear now , but in the long term.
Quote
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.
yet another states...
Quote
it should only be used on children when there has been poor response to other treatments.
Bunnie
« Last Edit: Monday August 11, 2008, 09:31:26 PM by bunnie »

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #457 on: Monday August 11, 2008, 09:42:32 PM »
Hi Blx.
Quote
Why put them on antibiotics (erythro) that can cause sun sensitivity?
That isn't correct. Not all antibiotics cause sun sensitivity or photosensitivity. Erythromycin does neither as far as I am aware. However the main *Tetracycline* does cause sunsensitivity, and Doxycycline, photosensitivity.
With regard to the UV light. Although it is undeniable that this does help plc and pleva, and indeed many other skin conditions, the worry is in any side effects which may not appear now , but in the long term.
Quote
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.
yet another states...
Quote
it should only be used on children when there has been poor response to other treatments.
Bunnie

Emycin can cause photosensitivity. Here's a link: (www.drugs.com/ppa/erythromycin-ethylsuccinate-sulfisoxazole.html)

As for use in children, what is the reference you are quoting, and does it say why? It would seem that the other treatments I've read about here have significant side-effects, whereas a few minutes of sunlight on the skin each day would seem to be pretty safe. So I would be interested in knowing the reasoning behind this statement. As I understand it, medicine is always a balancing of benefits and side effects.



bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #458 on: Tuesday August 12, 2008, 12:47:13 AM »
Hi here are the links, in none of them is Erythromycin associated with sun sensitivity. It mentions it in the other two types of tetracyclines, but not this one.  The link you gave does not refer to this erythromycin being used here for plc/pleva. Erythromycin ethylsuccinate,
Quote
this compound is an ester of erythromycin base and succinic acid.
Sulfisoxazole acetyl brand name Gantrisin
Quote
is a children's medication prescribed for the treatment of severe, repeated, or long-lasting urinary tract infections
, among other infections.
http://medical.webends.com/kw/Erythromycin%20Ethylsuccinate
Read under Systemic Treatment Options concerning the different tetracyclines
http://www.healthology.com/main/article_print.aspx?content_id=3
and.....scroll down to antibiotics on first link
http://www.emedicine.com/derm/topic334.htm
http://en.wikipedia.org/wiki/Erythromycin
http://dermnetnz.org/treatments/erythromycin.html
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682381.html
With regard to UV light....
Quote
Treatment with ultraviolet light usually ties patients to twice- or thrice-weekly visits to hospitals. Mild degrees of skin redness and burning are also common short-term adverse effects. Occasionally
more severe burning may occur. There is no direct information on the long-term risk of skin cancer in
atopic eczema patients undergoing ultraviolet light treatment. Although data on cohorts of psoriasis
patients undergoing PUVA suggest that cancer risk only increases after around 250 treatment sessions,
extrapolating from these studies to another inflammatory disease with a generally younger patient population raises some concerns. This is particularly so for melanoma skin cancer where it is thought that most risk is acquired from ultraviolet light in the first 20 years of life.
http://aappolicy.aappublications.org/cgi/content/full/pediatrics;104/2/328
The two quotes I left and posted previously on another post on here concerning this subject, were from the British Journal s of Dermatology I think if I remember rightly, which for the present I cannot find, and as it is now 1:40 in the morning here in the UK, you will I'm sure (after looking for them for over an hour) understand if I leave off to go to bed! However as I have said, most of the literature on this, expresses concern in the use of children under 12 years old for the side effects in the long term. I will search more tomorrow for those two articles , but I do assure you that they are direct quotes.
bunnie

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #459 on: Tuesday August 12, 2008, 06:26:35 AM »
Hi here are the links, in none of them is Erythromycin associated with sun sensitivity. It mentions it in the other two types of tetracyclines, but not this one.  The link you gave does not refer to this erythromycin being used here for plc/pleva. Erythromycin ethylsuccinate,
Quote
this compound is an ester of erythromycin base and succinic acid.
Sulfisoxazole acetyl brand name Gantrisin
Quote
is a children's medication prescribed for the treatment of severe, repeated, or long-lasting urinary tract infections
, among other infections.
http://medical.webends.com/kw/Erythromycin%20Ethylsuccinate
Read under Systemic Treatment Options concerning the different tetracyclines
http://www.healthology.com/main/article_print.aspx?content_id=3
and.....scroll down to antibiotics on first link
http://www.emedicine.com/derm/topic334.htm
http://en.wikipedia.org/wiki/Erythromycin
http://dermnetnz.org/treatments/erythromycin.html
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682381.html
With regard to UV light....
Quote
Treatment with ultraviolet light usually ties patients to twice- or thrice-weekly visits to hospitals. Mild degrees of skin redness and burning are also common short-term adverse effects. Occasionally
more severe burning may occur. There is no direct information on the long-term risk of skin cancer in
atopic eczema patients undergoing ultraviolet light treatment. Although data on cohorts of psoriasis
patients undergoing PUVA suggest that cancer risk only increases after around 250 treatment sessions,
extrapolating from these studies to another inflammatory disease with a generally younger patient population raises some concerns. This is particularly so for melanoma skin cancer where it is thought that most risk is acquired from ultraviolet light in the first 20 years of life.
http://aappolicy.aappublications.org/cgi/content/full/pediatrics;104/2/328
The two quotes I left and posted previously on another post on here concerning this subject, were from the British Journal s of Dermatology I think if I remember rightly, which for the present I cannot find, and as it is now 1:40 in the morning here in the UK, you will I'm sure (after looking for them for over an hour) understand if I leave off to go to bed! However as I have said, most of the literature on this, expresses concern in the use of children under 12 years old for the side effects in the long term. I will search more tomorrow for those two articles , but I do assure you that they are direct quotes.
bunnie

I think we're getting a little far afield. Yes, you're right. I cited a combination drug by mistake (erythromycin ethylsuccinate/sulfisoxazole) which causes photosensitivity. My bad. E-mycins cause me to break out in hives, so I'm biased. However, when looking it up on Medscape, I came upon the following statement that goes to the heart of my point:

"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." -- www.medscape.com/viewarticle/574465

Z-pak (Zithromax) can cause chest pain, uneven heartbeats, jaundice, colitis, and a host of less serious side-effects (www.drugs.com/mtm/azithromycin.html).

Steroids can cause ... do we really need to go into that one?

Now my point here is not to scare the heck out of everyone. My point is simply this: There is no free lunch. All these treatments have side effects, and none of them are risk-free.

The only reason to take a risk with any medical treatment is to obtain a benefit. The drug treatments for PLEVA/PLC do not work very well. Erythromycin ethylsuccinate, for example, has a 66% success rate for partial to full response, and when discontinued, generally results in a relapse. (http://linkinghub.elsevier.com/retrieve/pii/S0190962206022663)

Sunlight works very well. And it doesn't take much sunlight. A moderate and regular treatment in a tanning booth, enough to produce a healthy glow, is all it takes. And that is at least as safe as the drug treatments that don't work very well. Also cheap, something that matters here in the U.S., where we have to pay for medical treatment.

Apparently the researchers you quote didn't like the idea of "twice- or thrice-weekly visits to hospitals" for UV treatment, or the fact that their UV treatments caused some sunburns. Shame on them for burning their patients. Here in the U.S. the derms are over-charging them too. I went through the expensive, infrequent, dermatologist-recommended "narrow-band UV" treatments too, which left me no better.

Bunnie, you have Linear IGA, which requires complicated drug therapy using agents with serious side effects. I deeply sympathize. But I ask you this: If you could trade all those drugs for a few minutes a day inside a tanning booth ... in exchange for a complete remission ... would you do it? Would you have your child do it?

PLEVA/PLC doesn't really have a good drug therapy regime.  There have been no randomized controlled trials (!) for the various antibiotic therapies (www.emedicine.com/derm/topic334.htm) the derms push. Sunlight is a front line therapy with a clinically proven record of success.