Author Topic: Pityriasis Lichenoides Chronica  (Read 580497 times)

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Offline edwardsm

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Re: Pityriasis Lichenoides Chronica
« Reply #340 on: Saturday March 15, 2008, 02:57:03 PM »
Hi shauna / Bunnie,

Thanks for the feedback.

Shauna are you in the UK? Did your doctor immediately prescribe erythromycin  I am wondering if I should ask for some medication because right noe we are doing nothing. Its hard to tell if my sons spots are getting worse because he's 14 and hes always covered up and he hates the fuss if I ask!

Martin


Offline Shauna

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Re: Pityriasis Lichenoides Chronica
« Reply #341 on: Saturday March 15, 2008, 04:23:42 PM »
Martin,

No. I am in the states. I live in Georgia. Luckily for us, it is getting warm here, and I can start putting Dylan in shorts and T-shirts and letting him out in the sun. I don't think most derm's recommend the light treatments due to the concern with skin cancer later in life. My derm is completely opposed to tanning beds, and I think the lights treatments fall in the same category.

Yes, the derm we are with now prescribed erythro right away even though he was not sure if it was Gianotti Crosti or Mucha Habermann. From the pic's I pulled up on-line, I thought it was Mucha right away. And, since the erythro seemed to help with the inflammation, he determined it was Mucha as well.

I would ask to start erythro or some type of accepted antibiotic to treat the inflammation, since that is what it is for, not for an infection. If your derm is certain it is PLEVA or PLC, I would think he would have started some type of treatment. It seems that the "disease" spreads rapidly, so you have to treat rapidly to get hold of it.

Maybe ask about the light treatments too since your son is older. Mine is only 3. Also, my derm gave us "prax" lotion for any dryness and itchiness. Hydrocortisone has been shown to irritate it. Plus, long term use of a steriod lotion is supposedly not so good.

Hope that helps.

Shauna

Offline Shauna

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Re: Pityriasis Lichenoides Chronica
« Reply #342 on: Saturday March 15, 2008, 04:34:17 PM »
Bunnie,

Hi again. I was wondering if you knew anything about the long term effects for a child of being on antibiotics for an extended period. I am following the advice of my derm and keeping Dylan on erythro. I am just wondering what that could mean for him in the future.

And, I have stopped the supplements I was giving him. I was too concerned about giving him too much at once. I know the supplements are "natural," but they alter how the body works just like synthetic drugs. So, if the erythro does not do the trick, I may try something later. But, for now, I am trying to be patient and just follow dr's orders and let this thing burn itself out as he keeps saying it will. He tells me summer will be great for Dylan because it will help heal the marks left from the lesions.

Also, I am praying for him everyday. I pray everyday anyway but have been diligent about it and asking God to give me peace that I am giving the right treatment to Dylan and that He will let this work and heal him. I don't know if you pray, but if so, could you add Dylan to your prayers, and we will add you to ours too.

Thanks,

SHauna

bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #343 on: Saturday March 15, 2008, 11:04:43 PM »
Hello Shauna,
It is of course worrying for our little ones to be on antibiotics and we know of some little ones on here who have been on very serious drugs over a long period of time. They are moniterd well, and cope well. For what it is worth Shauna I personally feel you are doing the right thing. The antinflammatory may just bang it on the head, and I'm sure your derm will be monitoring Dylan closely, and will of course stop it as soon as may be. I suspect he needs to see a significant improvement lasting over a significant period of time, before he reduces the dose or stops it. The literature speaks so well of Erythromycin switching this condition off, and there doesn't seem to be any adverse reports concerning side effects.
The dose will be in relation to Dylan's age, etc.
Supplements confuse the situation, according to all the specialists involved regarding my condition. Sometimes they can have an affect on the drug itself, either making it less affective or increasing its capacity. As my docs always say , they want a clear picture of my blood specs. It is on that spec that treatment is based, specific to the individual. I understand from what I have read that  sunlight is very good indeed for pleva and PLC. Sunlight is very good for some of these manifesting conditions, and for some like my own  it's one of the things I am told to avoid. That is typical of many skin conditions, it can be really good for some and just the opposite for others.
Of course Dylan will be in my prayers and yourself. I read once before I lost my sight, To lay the load that wearied me at His Feet. That is an act of Faith. Mentally hand it over to Him, ask it always, whatever you want, "in Jesus's Name" that Dylan, and all the other children on here be healed. There, I have asked it. I pray for your peace, and if it is of any comfort at all, you are doing the right thing, of that I am certain.
" Verily, Verily, I say unto you, whatever ye shall ask The Father IN MY NAME, He will give it you"
John 16:23
Regards Bunnie

Offline Shauna

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Re: Pityriasis Lichenoides Chronica
« Reply #344 on: Sunday March 16, 2008, 01:37:17 AM »
Bunnie,

Thank you. It is of much comfort to know you think I am doing the right thing and to know you are praying for me and my Dylan. You seem very knowledgeable and must speak often to your doc's and ask them loads of questions. You do sound like you know what you are talking about. Thanks for the advice, prayers, and the verse. I wish you lived closer so I could give you a hug.

Thanks,

Shauna

Offline Shauna

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Re: Pityriasis Lichenoides Chronica
« Reply #345 on: Friday March 21, 2008, 06:51:45 PM »
Hi PLEVA and PLC'ers

Just giving an update on Dylan.

I took him off all supplements and decided to stick with the derm on this. He is still taking the erythro twice daily and getting plenty of sunshine on nice days. His lesions are all beginning to fade with only a few "active" ones right now. I still notice some new ones occasionally but am praying they all go away soon. The derm keeps assuring me that this is a self-limiting condition and that it should be completely gone very soon. I am trusting him and continuing Dylan's treatment.

I am using all natural and organic products on his skin - bathing, lotion, sunscreen, etc. I don't know if that is helping, but he is looking much better.

Shauna

Offline spottedchick

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Re: Pityriasis Lichenoides Chronica
« Reply #346 on: Saturday March 22, 2008, 07:45:15 AM »
Hi everyone I have been trying to read through this thread, I have been a member for a while but this is my first post!

I was diagnosed with PLC about 3 years ago, I am 29 years old now, but have had the spots for about 6 years, I have never been able to get used to them, and in the past year the spots have been appearing on my face, specifically on my eyelids - after having this condition for so long it just seems to be getting worse and Im getting more and more down about it. I would love to wear short sleeves in summer but I look like a leper. Im just really down about it. Ive tried antibiotics, creams etc but nothing works, they say it will go away eventually but its been 6 years maybe more, (Ive lost count) and I dont see an end to this  :'(

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #347 on: Saturday March 22, 2008, 08:25:23 AM »
Hi everyone I have been trying to read through this thread, I have been a member for a while but this is my first post!

I was diagnosed with PLC about 3 years ago, I am 29 years old now, but have had the spots for about 6 years, I have never been able to get used to them, and in the past year the spots have been appearing on my face, specifically on my eyelids - after having this condition for so long it just seems to be getting worse and Im getting more and more down about it. I would love to wear short sleeves in summer but I look like a leper. Im just really down about it. Ive tried antibiotics, creams etc but nothing works, they say it will go away eventually but its been 6 years maybe more, (Ive lost count) and I dont see an end to this  :'(

Hey Spottedchick,

6 years is such a long time I don't know how you've survived all that time. But you have. and thats the main thing. You must be pretty strong to be able to keep going on. I know how depressing it can be, and how self-conscious you feel when people see the spots. But if you accept it that the spots are apart of you then eventually you will not even notice you have them anymore and will not give a damn what other people think. You are down because you are letting yourself be down. The only limit to happiness in this world is what you set it at. I wish you all the best and I hope you forget about your spots and hence they forget about you.

Happy easter,
Josh

Offline spottedchick

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Re: Pityriasis Lichenoides Chronica
« Reply #348 on: Saturday March 22, 2008, 08:53:38 AM »
Hi Josh, thanks for your reply. You are so right and I wish I could except them! Maybe I will in time because I dont see them going away anytime soon.

Happy Easter to you too  :)

Offline Shauna

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Re: Pityriasis Lichenoides Chronica
« Reply #349 on: Sunday March 23, 2008, 06:04:59 PM »
Spottedchick,

I am sorry to hear how down you are. I cannot say I personally know how you feel since it is my 3 year old son suffering from PLC. But, as a mother, I know how I feel seeing my boy covered in spots. It is heartbreaking. But, I have learned to look past them and see him for what he is - an adorable, loveable, sweet little boy. And, I have realized that it looks much worse to me than it does to other people. I guess it is a little like when I had acne in high school. I always thought I looked horrible, when others barely noticed.

I wish I had some amazing advice for you about how to get over your depression or how to get rid of the disease. I have neither. I would suggest however finding a specialist who has dealt with this disease before and not just looked at it in a book. The derm I take Dylan to has treated this condition before and seen it disappear. He assures me that with the erythromycin and light exposure (natural sunlight outside); Dylan's spots will fade. He says the disease will eventually burn itself out and never return. Now, this is the case for most children. I do not know how the disease plays itself out in adults. But, if you are not taking any meds right now, I would suggest seeing a nutritionist or a doctor of naturopathy. They will probably give you some liver cleanses and suggest some other supplements to clean out your system. It could not hurt especially if you are not on any meds. If you are, I would wait on that. I read a few people trying those methods with success.

Good luck,

Shauna (Dylan's mom)

Offline spottedchick

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Re: Pityriasis Lichenoides Chronica
« Reply #350 on: Monday March 24, 2008, 07:23:50 AM »
Hi Shauna, thanks so much for your reply. I have a 3 year old daughter and cant imagine what I would feel like if she had this disease, but your little boy is gorgeous! I do hope his passes quickly and hopefully it will be gone quickly and he wont even remember having it!

thanks for your advice, I did try erythromycin and it just made me feel sick so I stopped taking it. I have heard about sunlight helping, its just getting out in the sun in the first place thats the difficult bit as Im self conscious about my skin ::)

I had a biopsy to determine the disease but the doctors didnt really know much about it, so I was given some cream and sent on my way. I was offered light treatment but turned it down as I had a little baby at the time and was a single parent so couldnt really go three times a week...

Anyway sorry for rambling it is so good to find others with this condition, I searched all over the internet and eventually found this place!

xxx

bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #351 on: Monday March 24, 2008, 10:50:08 AM »
Hello Spottedchick, just to add you needn't have felt nauseaus with the erythromycin, as the doc could have given you a stomach med to counteract those symptoms of having tummy upsets and feeling sickly. I understand with most people they feel like that in the beginning, but then things settle down and those symptoms go away, (often the case with any antibiotic),  but there are preperations to protect you from those side effects. I mention this should you have a bad outbreak and wish to reconsider trying the Erythro. again, telling the doc of the symptoms of nausea that you had previously.
Bunnie

Offline Shauna

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Re: Pityriasis Lichenoides Chronica
« Reply #352 on: Tuesday March 25, 2008, 03:04:32 PM »
Quote
I have a 3 year old daughter and cant imagine what I would feel like if she had this disease, but your little boy is gorgeous! I do hope his passes quickly and hopefully it will be gone quickly and he wont even remember having it!
Thanks. I think he is pretty cute myself!! That is what is so frustrating about this disease - it really does a number on one's skin. But, it is fading with the sun exposure. I also pray that it will go away soon never to return. And, he will never remember having it.

Quote
I did try erythromycin and it just made me feel sick so I stopped taking it. I have heard about sunlight helping, its just getting out in the sun in the first place thats the difficult bit as Im self conscious about my skin ::)

Yeah, you might do what Bunnie suggested - trying the erythro with some anti-nausea medicine. So far, Dylan has not complained about an upset stomach, and he has been taking it for almost 2 months now. It sounds like such a long time, but the derm assures me that he will be fine. There have been no adverse reactions to it in any reports. So, hopefully it will do the trick for Dylan and rid his system of this. I have learned to be patient with this. I was upset after 1 week of being on the erythro that he was not clear. But, it just takes time. I guess it is a pretty stubborn disease.

And, as for the sunlight. I have noticed a tremendous improvement since Dylan has been out in the sun. If you can just sit out in your yard with shorts and a T-shirt, that would probably help a lot. Then, once those areas start clearing, you might feel better about getting out in your swim suit at the pool. The sunlight really does help a lot. Also, try using some lotion to soften your skin. I noticed Dylan's skin was so dry once the spots started fading and crusting over. It made him itchy. So, I use "prax" lotion for the itch and an all natural lotion called "California Baby." You can find it at Whole Foods or any health food store.

I hope that helps and that you can find something to help your skin.

Best of luck,

Shauna

Offline spottedchick

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Re: Pityriasis Lichenoides Chronica
« Reply #353 on: Wednesday March 26, 2008, 07:55:45 AM »
Bunnie, thank you for that info I was never offered anything to counteract the sickness just was told to stop taking them  >:(

I would like to try them again or maybe the antibiotic beginning with T? cant remember the name i heard about it in this thread.

Youre right Shauna its beyond stubborn! Ive always wanted a big tattoo on my arm, so I might be having it done friday if he can fit me in. That way I might get myself to show my arms off, eek!

bunnie

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Re: Pityriasis Lichenoides Chronica
« Reply #354 on: Wednesday March 26, 2008, 09:11:39 AM »
Was it Tetracycline? There are a few types of tetracyclines, take a look at this link...
http://en.wikipedia.org/wiki/Tetracycline_antibiotics#Examples_of_tetracyclines
note it says that it works by inhibiting gene transcription, which one suspects inhibits the malfunctioning process from occuring, due to the mal-information  within the gene DNA, (a mutated gene)
Bunnie

Offline galpal

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Re: Pityriasis Lichenoides Chronica
« Reply #355 on: Wednesday March 26, 2008, 09:57:27 PM »
Hello All,

It is sad to be posting here again.  My daughter, 7, has had another bad outbreak of spots.  So much for self-limiting.  We do live in the northeast and winter is almost over.  My main comfort is that soon I will have her in a bikini.  Last summer, the spots went away completely.  Also, her doc at Boston Children's agrees that the effects of the sun have a lingering impact.  She didn't get her first new spot until November.  That was almost 6 months without the dang things.  Then a few more little ones came.  Now it is late March and they are big, bad ones again.  Also, strange places like eyelids, under the chin, under her bangs....

The Erythro didn't help her but supposedly it helps in 60 plus percent of children.  I just use Aveeno for the itchiness at night, epson in her bath and the clear laundry detergent.  I treat the sores with mupricin (sp?) which definitely improves the healing process but doesn't prevent anything.  Also, she was getting chicken pox like scars before we used the topical cream.  Now she just has the discoloration and white spots. 

Well, I do believe this thing will wax and wane over the years but we are used to it and I make no fuss over it at all.  Also, I feel lucky that she's a happy little girl who will want to play in the sun anyways and that is exactly what will send it into remission again. 

  I was so low last year at this time.  After my few visits to Children's Hospital, I know that there is so much worse out there.  Not that other people's misfortune makes me feel better, rather it makes me realize that life just isn't perfect and I'm amazed by the strength and positive outlook of others and I hope to give that to my daughter.

Good luck everyone.


Offline Shauna

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Re: Pityriasis Lichenoides Chronica
« Reply #356 on: Wednesday March 26, 2008, 11:56:48 PM »
Galpal,

Sorry to hear about your daughter. It seems like you all are ok with it - or as ok as you can be. How long has she had it?

My son Dylan, 3, has had it since this past December. He has been on erythro for about 2 months now. It seems to help a little but not enough to make me want to keep him on it for much longer. I think the sun is helping more than anything. The spots were almost all clear a few days ago but look redder again today. And, I think I have seen a few new ones. It makes me crazy and makes me second guess everything I give him to eat and drink. The derm assures me it does not have anything to do with food but I can't help thinking it does.

I really need to get him out as much as I can in shorts and T-shirts. As soon as the pool opens, we will be there too. I don't even care what the other parents think. Well, I do but I guess I will just have to explain to everything that he is not contagious. Oh, this disease is really frustrating.

Any advice you have to offer would be appreciated.

Shauna

Offline spottedchick

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Re: Pityriasis Lichenoides Chronica
« Reply #357 on: Thursday March 27, 2008, 09:51:18 AM »
Was it Tetracycline? There are a few types of tetracyclines, take a look at this link...
http://en.wikipedia.org/wiki/Tetracycline_antibiotics#Examples_of_tetracyclines
note it says that it works by inhibiting gene transcription, which one suspects inhibits the malfunctioning process from occuring, due to the mal-information  within the gene DNA, (a mutated gene)
Bunnie

Yes thats the one Bunnie, thanks for the link :)

Offline galpal

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Re: Pityriasis Lichenoides Chronica
« Reply #358 on: Thursday March 27, 2008, 11:43:32 PM »
Hi Shauna,

I was so sad when I read about your little boy.  I remember the horror of last year when my daughter was covered with the sores.  I think anything that you do to strengthen his overall health can only help.  I know there has been lots of discussion on this site about DNA and autoimmune but that is no reason to throw your hands into the air and give up.  After all, there are MANY autoimmune diseases that are treated.  We don't give up on people with Asthma, Diabetes etc...

I absolutely believe there is a trigger to this disease.  Whether it is viral or bacterial, I don't know.  I suspect my daughter had an untreated strep infection.  She had a very sick winter last year.  I found out months after her initial outbreak that two other children in her first grade class had some sort of strep induced eczema and BOTH were receiving light treatments.  Way too much of a coincidence. 

Now, I am germ crazy.  If she has a sore throat, I don't wait for the high temp.  She is in for a throat swab the next day.  If she is sick with a cold and is getting worse then I don't buy the "it's viral, no antibiotics" because I used to buy that nonsense.  Lots of sleep, water and good nutrition.  I'm not sure what stressor causes a relapse but, so far, even after a long winter, she is doing well. 

While I don't expect to cure this, I hope that we are minimizing it until it someday tapers off (which does happen).  I think you said that you live in Georgia so get your gorgeous boy some sun and try to ignore the "dumb dots" (my daughter calls them). 

I go on another chat site and it does seem that the first outbreak is the worst for everyone.  So know that it should only get better.  Believe me, this outbreak is a piece of cake!! 

Lots of good wishes to everyone.


Offline Shauna

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Re: Pityriasis Lichenoides Chronica
« Reply #359 on: Friday March 28, 2008, 12:02:00 AM »
galpal,

Thanks for the feedback. And, thanks for saying my boy is gorgeous - he so is!!

I have also heard that the first is the worst outbreak. Then, it waxes and wanes but is usually never as bad as the first. So far, that has been the case for Dylan. As the others are clearing, he will get a few new ones here and there but not so widespread as initially.

Yes, I too would LOVE to know what triggers the outbreak. All I can remember with Dylan is that he had a runny nose for about one month. Then, most of the family came down with strep. I had him tested; but, his results came back negative. So, we were all on antibiotics except Dylan, and he comes down with PLEVA. So, who knows about the strep. He very well could have contracted it after we had him tested and then never got treated for it.

I agree with the good nutrition. I also think food can play a part. I have started keeping a diary of what Dylan eats and how the spots looks from day to day. Yesterday when he looked very red, he had cow's milk for dinner. I had been keeping him off that for a few weeks just to see what happened, and the spots were fading. So, I am going to keep him off of it again and see if that helps. I have been reading a lot of sites about the negative effects of cow's milk on children and adults. So, I will let you know if it helps. I have also sworn off fast food like McDonalds, Wendy's, etc. I try to cook for dinner every night now and always have lunch here or pack it for him myself.

Also, what cream did you say you used on the lesions? Muci-something. I have never heard of that. I have only heard of cortisone creams for the itch. I have been using "prax" for the itch and California Baby for the dryness. And, yes, we will be in the sun as much as possible now.

Shauna