Author Topic: Pityriasis Lichenoides Chronica  (Read 553345 times)

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Offline elseaeff

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Re: Pityriasis Lichenoides Chronica
« Reply #180 on: Monday June 26, 2006, 05:19:06 PM »
Greetings Again!  :hi:

Thank you for your words of encouragement, Jahanara. I am located just south of Richmond, so I do get plenty of sun here -- I should say plenty of bearable sun here. There's been a nasty cold front lingering just to the west of us, sliding east and west, just enough to bring storms and sun hour by hour. I suppose it's OK since I burned myself yesterday and need some time before going out and doing it again! I'm a firm believer in the power of the sunlight and it's control over PLC. This time last year I was a mess, covered with oozing pustules that were literally driving me crazy! After spending three months with my primary care doctor who didn't know what do do, I was finally able to get into a dermatologist who diagnosed me instantly and had me on the road to wellness. I can't tell you what a nightmare it was to be covered with PLC and have no means of relief from the itch and sores. I had staff infections several times during the months before I finally had the 'disorder' under control.

The dermatologist gave me creams to help with the itch, which only made them worse because they were too heavy and robbed the skin of air. I've learned that only water-based creams work on PLC skin now. Finally, she had me use her 'Narrow-band UVB light box' 5 days a week, $20 a day and a round trip drive of 90 miles. As the cost of gas kept increasing, the cost of her treatments continued to get more and more expensive. Her nurse told me to ask her about a tanning booth. I did and she approved it (but not a tanning bed where you lay in someone elses's 'juices') so now I spend $25 a month and use a tanning booth for as long and often as I want, getting the same results as I was in her expensive booth. I still see my dermatologist 4 times a year, so I haven't given up with the experts.

During my 6 months of agony before the PLC was under control, I discovered there were certain types of creams and oils, cleaning 'rituals' and clothing that worked best for my condition. I'd be most happy to share them with you if you'd like to privately message me.

Knowing the pain and discomfort, public shame, and personal dismay I endured with my bouts of PLC, I can only say that my heart goes out to those children who have to endure the same. I'm sure you saw my earlier post when I 'spouted' to those who are waiting for puberty to cure their children's malady. I first encountered PLC at the age of 49. There are many different disorders that stump doctors and leave them with no choice but to attribute them to childhood and mark puberty as the turning point of the disorder's change. We have learned that is no longer the case.

Sunlight can be dangerous if not monitored, but in cases such as ours -- us with PLC -- it can be a blessing. You can use sunscreen and you can still monitor the time of sun that is received. But, look at your child and ask which is worse? As someone who suffers from the awful effects of PLC, I can tell you that a small bit of sun each day (my doctor told my that 5 minutes a day is all it takes) is more than worth the pain and suffering from PLC.

Have a blessed day!

elseaeff

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #181 on: Monday June 26, 2006, 10:19:42 PM »
PLC4me, glad to hear you are improving.  Have you been getting alot or a little sun, or do you think the improvement is the natural course?  Where are your PLC spots distributed mainly?

Hi, well I got alot of sun in the summer. It's winter now so no not much sun. I don't think the sun would do anything. I think the thing that helped the most was the tetracycline the doctor prescribed for me...

Offline EX-itchell

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Re: Pityriasis Lichenoides Chronica
« Reply #182 on: Tuesday June 27, 2006, 11:45:31 AM »
Hi everyone,
I haven't checked in for a while because I have stayed clear.

- Elseaff I am SO sorry to hear that you're not doing well :( - Is there anything I can suggest to you that you haven't tried?  I was obviously lucky in not having the chronic version.  If you think of any information I could help with, email me seperately please.

I've continued eating lots of raw veg, some sprouting veg, and lots of fruit, with much less meat than previously, as I don't like it so much any more.

For the newcomers I had PLC for about 8 months and have no signs at present.

The dark spots that PLC4ME mentioned took longer to go, but after another few months they did disappear and I have no visible signs.

Good luck to everyone :bighug:

Ex-itchell
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Offline jdavis331

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Re: Pityriasis Lichenoides Chronica
« Reply #183 on: Thursday July 06, 2006, 08:25:27 AM »
Hello all... I am 28 and was diagnosed with PLC about 4 wks ago (but have been living with this lovely disease for about 12 weeks now)... I know that some of you (or your children) have had the funk (as I call it) for much longer, so sorry if I complain too much...

So, about 12 weeks ago, I started getting what I thought were hives on just one of my arms... I am a nurse (for kids... so I thought it was surely some funky infection/virus I had picked up)... took benadryl (topical and oral) with no luck then tried steroids (topical and oral). Once again, no luck... after this, I decided to take my butt to the doctor (at this point, I had hundreds of sores that looked almost like petichea on both of my arms and on my abdomen)... primary care physician had no idea what this was and after running blood work for just about every virus in the book, sent me to a dermatologist. after being out of work for 3 1/2 weeks, and with what seemed to be thousands of sores everywhere but my face (there was not a single square inch of my body that didnt have at least 3 or more sores), I was finally diagnosed with PLC (by biopsy)... Dr. prescribed more steroid cream (which did no good) and tetracycline (which I decided against taking... taking an antibiotic for an auto-immune disorder didn't make much sense to me)... I was told it could last anywhere between 2 months and 2 years... being the optimist that I am, I thought, OK... well, I am half way to the minimal time it can last... I will just suffer through it...

Last month, I went to Mexico on a pre-PLC planned trip... after much dwelling, I decided that I didnt really care what people thought of my funk and went out to the pool in a bikini... man, the looks I received... I wanted to just melt into the concrete when people stared at me getting in the pool (i swear they were saying "i hope she is not planning on getting in the water with me!")... I have pretty good self esteem, but this definetely knocked it down a couple of notches... However, since I had read everywhere that sun was the best prescription, I went out everyday and tried not to care about what anyone thought... It really was amazing what the sun did for me... Within 2 days, all of the sores I had began to dry up and by the time I got home (1 wk later), the sores were almost gone... yeahhhhh!!!!

Three days later, I wasn't so happy... now, instead of sores (which were virtually gone), I had hypopigmented spots all over me (really, no exaggeration, I looked like I had leopard spots... some people at a softball game actually asked me how I did it, thinking I had done it intentionally...)... I was under the impression that the hypopigmentation only affected darker skinned individuals, but I am a white girl and still have the lovely leopard spots... luckily they are fading and hopefully will not be permanent...

Now, 2 weeks post trip, the sores are returning... and this time I am itching... badly... whereas before I had no itching or pain associated... I haven't figured out whether the itching is from dry skin or the disease process, but eucerin and aquafore does appear to help... so I just try and keep myself lubed up (didnt realize how tideous putting lotion on 3 times a day can be... quite nerve racking at this point)...

So, I found this web site a couple of days ago while looking up the whole hypo-pigmented thing... I am glad to see there ARE, in fact, other people that suffer with this horrible funk... but I am not so sure I feel any better about it after reading about some people who have had this for years... I guess I just wanted to get some of this off of my chest since nobody that I know understands... I am still trying to have a positive outlook about it... I am planning on starting tanning at a tanning bed next week, in hopes that it will keep the funk under control... does anyone know what the minimum effective time and how many times a week I should go (I dont want to look 80 at 40 from too much tanning, so minimum is key)???

Much appreciation for listening to my wonderful complaints,

Jenn
« Last Edit: Thursday July 06, 2006, 08:27:12 AM by jdavis331 »

Offline princesslaura

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Re: Pityriasis Lichenoides Chronica
« Reply #184 on: Thursday July 06, 2006, 04:25:44 PM »
Heya Jenn

sorry to hear you have PLC to nd that its really bad at the moment.I'm 15 and got PLC about 3 years ago, the consultant says it should go in time. I had this ultra violet light treatment for mine at the local hospital which was basically a sunbed that you stood up in nd i had it three times a week. I started only being in there for 10 seconds but then it gradually worked up to a minute after endless trips. I did this treatment for a whole summer and i saw very little difference in my skin, nd i gt white rings around my eyes hehe. i've had PLC for about 3 years now and i find that the best thing for it is moisturising and going in the sun when possible, and i can fully relate to how you feel when you go in to the sun i get people coming up to me asking if i have chicken pox or if i'm conageous and its sooo annoying, but i've learnt to ignore it now. When my skin gets really bad i use hydrocrotisone cream perscribed by the doctor but try not to use it too much because of the effects the steroids have on the skin but it seems to work welll when i do use it.


Best of Luck
laura xxx  :)
~*~ believe and your dreams will come true ~*~

Offline EX-itchell

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Re: Pityriasis Lichenoides Chronica
« Reply #185 on: Friday July 07, 2006, 10:06:03 AM »
Hi Jenn and welcome to the forum,

I am a plc sufferer in remission - who knows if it has gone away permenantly after all.

Please consider what you eat and drink, because I am quite sure my problems stemmed from the inside NOT the skin, so the derms were useless.  I was under great stress for about 2 years which finally ended and got spots some months after.  I think  the plc for me was caused by a mixture of stress and toxins.  So I went on a really healthy diet cutting out all alcohol, and wheat amongst other things, and after a few months the spots stopped occuring, and now 5 months after that, have all but vanished.

Whilst I realise my methods may not be successful for everyone - particularly children who are unlikely to have got the disease for the same reasons as me - I truly recommend you consider a careful diet. 

My personal view of sun is that it may suppress symptoms temporarily, but they will not disappear through tanning, and will bounce back when you are out of the sun.

I am happy to give you details of the diet if you want them, but whatever you decide, I wish you the very best of luck.

Consider wearing only pure cotton as it allows the sweat to escape and avoids heating you further which in my experience resulted in more spots.

All the best ,
EX-itchell
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Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #186 on: Tuesday July 11, 2006, 01:48:33 PM »
Hello Everyone,

Just checking in since it has been a while that I've posted.  I always keep an eye on the thread though.  My daughter's skin is doing its usual summer improvement.  Of course the PLC is ever present, quite spotty.  Esp on upper arms/ upper legs. and to a lower trunk.  Summer has improved it.  We are doing swimming this week.  Florida sun is so strong.  She will be eight at the end of the month.  I still have a while to go til puberty...Fingers crossed!

Take care,


Offline jdavis331

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Re: Pityriasis Lichenoides Chronica
« Reply #187 on: Saturday July 15, 2006, 05:33:53 AM »
Hey guys... thanks for the input... sorry I haven't responded yet...

UPDATE:

The "leopard spots" on my arms are almost completely gone (yeah!) but now they are on my legs and abdomen (I am assuming that is because this is how the progression of the sores came on), not so bad, though, I can deal with my legs (they don't look near as bad as my arms did). The sores have returned, but definetely not near as bad as the first "episode" (actually, more like five episodes back to back). The itching is still a problem, but I have determined that it is from dry skin b/c when I lube up, I'm good for about 5 hours... if I slather on the lotion before the 5-7 hour mark, I'm usually ok... I haven't started tanning and decided against it for now.  Decided to just deal with it... now that the initial shock is gone and now that I know all 'episodes' aren't necessarily gonna be as bad as the first, I think I can deal... I'll just keep my fingers crossed...

I'll keep you guys posted!!!

Thanx,

Jenn

Offline Dianaoon

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Re: Pityriasis Lichenoides Chronica
« Reply #188 on: Tuesday July 25, 2006, 02:05:11 AM »
Dear Everyone:

I've been reading the recent posts on PLC, and wonder if anyone can give me their views on what's going on with my son. He's 3.5 yrs old, and has been having plc since he was 16 months and was only diagnosed two months ago (we were told previously it was allergies and blood tests confirmed egg and banana allergies).

Since then, we've tried sun (10 mins a day, daily, then alternate days) which helped, but new spots keep appearing, though sparser. (we live in the tropics, hot and wet all year round). Even so the dermatologist is andamant that he has to "treat" my son till no new spots appear, because he maintains that if the disease "progresses" then we run the risk of damage to his other organs and tissues. Has anyone been told this before?

Because of this, my son is now on oral steriods for 8 weeks, i am told it's a low dose and should pose no long term effects, but my issue is 3 weeks into this course of treatment, his spots are the same -sparser, but new ones keep appearing. My question is has anyone else found their dermatologist strongly advice continued treatment with steroids, and what are the downsides of this?

My son is also on fish oils and probiotics and vitamin c, as advised by the derm.

I am just wondering how much more steriods we should agree to and will the harm outweigh the good the medication does?

I've read the stories on hypopigmentation and my son's skin too darkened considerably with the solar therapy, but having begun to use pure sesame oil as an after bath and before bed moisturiser/massage oil seems to help considerably with the dryness and flaking and hence, reduced the itching. we use a water based simple cream as an emollient and bath lather, rather than soap, and that too has helped with the dryness and itching.

Thanks everyone,

Diana

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #189 on: Tuesday July 25, 2006, 03:31:21 PM »
Hi Diana,

Don't listen entirely to your derm.  It doesn't sound like he knows what he is talking about, with internal organs etc...  I have a girl who is nearly 8 who got PLC before she was 2.  Our children will not have it forever..  It will burn itself out.  The question is when, but my old doctor (we moved away) was well versed in PLC, since he saw quite alot of it over his many years of practice.  All the kids with the rare skin conditions went to him, he was based in Boston Children's.  I remember asking him when she was first diagnosed, why it didn't affect other parts of her body.  Even though it is believed to be an immune-based condition, it is solely a skin condition.  My daughter, aside from her skin, is hardly ever sick.  It is solely limited to the skin.  I don't know what your derm is talking about.  It is not like different types of psoriasis which can sometimes affect joints, etc...  From what I understand, the treatment of choice is small amounts of natural sun, and sometimes, people benefit from a trial of erythromycin.  My daughter did not benefit.  My old doc found that over the years, erythro didn't do much to any of his patients.  Steroids don't seem to do much (my own experience).

I am going to write you an excerpt of my Boston doc's letter that he gave regarding my daughter's PLC, prognosis, etc.. perhaps it will put your mind at ease...(I like to read it when I get a little down sometimes):  This letter was written when she was 4, and had had it for 2 years:

..."Patient is a 4 1/2 year old who carries the diagnosis of pityriasis lichenoides chronica.  Her skin lesions first appeared on her legs in March 2000 and spread to her trunk and arms.  She was seen by Dr..... who obtained a skin biopsy in the fall of 2000 that confirmed the diagnosis.  She has been treated with topical steroids and a trial of Elidel, which has no effect.  The lesions have been asymptomatic.   On physical examination, this was a well=appearing child who had a widespread eruption that consisted of erythematous scaling plaques ranging in size from 1-4 mm.  They were most pronounced on her flexural arms, inner thighs, and buttocks.  There was a sparing of her face, palms and soles.  My impression was that her skin eruption was consistent with PLC.  I told her parents that this condition may remit at any time.  In my experience, most patients improve by puberty.  Topical therapy is usually not effective.  There may be an improvement with natural sunlight or ultraviolet light treatments.  In rare instances there may be a progression to cutaneous T-cell lymphoma.  I recommended that she be seen yearly by a dermatologist."

Diana,   I used to be really freaked out about the whole CTCL.  Of course it still worried me a bit, but not as much since it is so rare.  Also, I heard on the news that any one with these types of conditions, particularly psoriasis, are at slightly elevated risk for CTCL.  I know a few people who have had psoriasis their whole lives, and they are "healthy". So it doesn't worry me much anymore. 

I would continue on with the moisturising, since as you know, it makes skin dry.  It is good you are in the tropics, a little more sun is always good.  We live in a subtropical climate now, so we get alot more sun then we did in Boston!  If it were me, I would not do oral steroids.  Perhaps  the occassional topical steroid for spots (but I didn't notice a significant difference).  Don't worry, it will not spread to your child's organs.  This is a rare condition, and there are other derms I have met in the past who are not familiar with PLC.  Your derm sounds like one of them. I just hate to have him alarm you so much!  How extensive are his spots at the worst and best?  What time of year are they at their worst?   Does it spare his face for the most part?  What about palms/soles?  Does he have only chronic variety?  Are some necrotic/itchy/bleeding (the acute version called PLEVA)? Are you just letting him play out a little in the sun or is he actually in  UV box?  MY doc cautioned against the UV box therapy, given her age, and the fact that natural sun improves.  Perhaps if she is (god forbid) having it as an adult, she might opt for it...but as a child, I am not going to do it).  Where are you from? 

Take care, and don't let the docs let you fret with this nonsense about internal organs.  No matter how much light therapy he gets, he will still get new spots for quite some time.  It will have to burn itself out, but it is common for it to grumble on for several years.  Your derm needs to read up some more on PLC in some of the journals. 

Jahanara

"Patient is a 


Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #190 on: Tuesday July 25, 2006, 10:41:19 PM »
Diana, ask your derm about tetracycline. I took it for a few months and my spots slowly disappeared. I didn't find the UVB did anything. If your son takes tetracycline, he must stay out of the sun though.

I wish you and your son all the best and hope the PLC will go away fast.

Thanks,
PLC4ME

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #191 on: Wednesday July 26, 2006, 12:02:47 PM »
PLC4ME,

Are you PLC free for now after the tetracycline?


Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #192 on: Wednesday July 26, 2006, 10:17:02 PM »
PLC4ME,

Are you PLC free for now after the tetracycline?



Yes I still have a few spots fading though. I seem to have got worse acne since so I might be going on Roaccutane..

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #193 on: Wednesday July 26, 2006, 11:55:26 PM »
PLC4ME, that's great news!!  I have questions for you:

So with the exception of a few spots, you are clear? 
How long did you have it for? 
How extensive was it at its worst? 
When did you start tetracycline, and how long were you on it til you noticed results? 
Were you biopsy diagnosed? 
Where are the last of your spots now? 
Did you ever tan a little to get rid of them?  You mentioned UVB. 
Do you think it was directly attributed to tetracycline, or do you think you were fading out anyway?

I am encouraged by your news because it gives hope for my daughter.   Please let me know.  Thanks,

J

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #194 on: Thursday July 27, 2006, 04:37:30 AM »
PLC4ME, that's great news!!  I have questions for you:

So with the exception of a few spots, you are clear? 
How long did you have it for? 
How extensive was it at its worst? 
When did you start tetracycline, and how long were you on it til you noticed results? 
Were you biopsy diagnosed? 
Where are the last of your spots now? 
Did you ever tan a little to get rid of them?  You mentioned UVB. 
Do you think it was directly attributed to tetracycline, or do you think you were fading out anyway?

I am encouraged by your news because it gives hope for my daughter.   Please let me know.  Thanks,

J

Hey Jahan,

Yeah I haven't got any new spots for about 10 months now... I am pretty much clear at the moment.

I had it for about 6 months.

At it's worst was probably the first month I got it, it was everywhere except my face. Got right up to my neck, all over my arms and chest and legs. First started on my stomach. Then the spots just stayed there and didn't get any better while I was on the UVB treatment.

I started tetracycline when I went off the UVB, and the spots went away after about 2 bottles of tetracycline... So about 2 months.

Yes they confirmed I had PLC.

The last of my spots are a few small dark ones on my hands and large faded ones on my leg...

I got some sun but that didn't really work. The dermatologist told me to take cold showers aswell to stop them flaming up. But I was so sick of that so I just took warm showers and it didn't flame up, it didn't seem to matter at all.

I think it was because of tetracycline, but I don't know.. It might have just been fading out when I started taking the tetracycline.

I hope your daughter gets over it, I know how embarrasing it can be and frustrating at times. I just kept thinking to myself I will never see my skin unspotless ever again. I'm so happy that it is now gone. You should really consider finding out about tetracycline..

Thanks,
PLC4ME

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #195 on: Thursday July 27, 2006, 11:53:17 AM »
Hey PLC4ME, thanks for the info.  You didn't have it very long, you are lucky.  My daughter got it when sshe was 2 and she is nearly 8.  They told me it should burn out by puberty.  Something happens with the immune system which changes from childhood to teenage hood I guess.  She is too young for tetracycline, because it can damage developing teeth.  It is not safe for children tot ake it until they are 12, so perhaps, if I am still dealing with this in a few years, I will have her try it at 12. 

I am so glad for you!  It makes me happy to know that there is an end in sight.  Did you ever get an occassional spot on your face?  My daughter occassionally gets them around her chin/lower jawline, but they are smaller. 

Please keep checking out our link now and then, because it is so refreshing to hear some good and encouraging news!

Sincerely,

J

Offline Michelle12

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Re: Pityriasis Lichenoides Chronica
« Reply #196 on: Thursday July 27, 2006, 06:15:08 PM »
Hi. This is my first time on here. I'm 21 years old and I was just diagnosed with PLC about a month ago. I've had these spots since Feburary of this year. It started out very similar to Pityriasis Rosea where I had one large spot and then about 3 weeks later a lot more spots came. The first dr I went to thought it was PR and said it would go away in about 4 weeks and if I wanted to help it go away faster I should go tanning and use this steriod cream that he gave me. The steroids helped ALOT but once I stop using them they come back. I found that tanning helped a little bit but I didn't see a drastic change in the spots. I decided to get a second opinion from another derm and he said I have PLC. He gave me a 10 days supply of Erythromycin and told me to use Elidel and to stop using the steriod cream because it's not good for you. Erythromycin and Elidel did not help me. The only thing that happened was I got a lot more spots and they are a lot bigger and redder than they ever were before. I have them mostly on my back and my legs but most of my spots are very large in size. I have 3 on my chest that are all about 1 to 1.5 inches long.

I have not had a biopsy done yet but I am getting one. My appointment isn't until next Friday and it will still take about 2 weeks after that to get the results they said.

I have a little bit of itching but I find that if i keep lotioning my body that takes care of most of the itch. I use Cetaphil lotion which works really well. My derm also gave me tetracycline to try since I read about that on here. However, he doesn't think it will work since Erythromycin and Elidel didn't work. I have been on tetracycline for almost 1 week now and I haven't seen a noticeable difference but I understand it takes quite a while to start working. My derm said the next step would be UVB treatment but I'm not very convinced that will make a difference either.

Recently I have noticed that instead of being a full red spot, a lot of my spots have turned white/pink in the middle and darker on the outside. Does anyone elses look like this also?

I completely understand everyones frustration with this issue. It is extremely embarassing. Especially in the summer months. The sun is supposed to be good for PLC but I don't want to wear shorts or any kind of clothing where other people can see because they automatically start asking questions and thinking I'm contagious. I also cant be in the sun if I'm using tetracycline. When I get really down about it I find I often want to resort back to the steriods because at least that got rid of them temporarily and no one could see them. But I have to talk myself out of doing that because I know its only a temporary treatment. They will come back just as strong as before when I stop using the steriods.

Thank you for listening to my complaints.

Michelle

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #197 on: Friday July 28, 2006, 05:44:24 AM »
Hi. This is my first time on here. I'm 21 years old and I was just diagnosed with PLC about a month ago. I've had these spots since Feburary of this year. It started out very similar to Pityriasis Rosea where I had one large spot and then about 3 weeks later a lot more spots came. The first dr I went to thought it was PR and said it would go away in about 4 weeks and if I wanted to help it go away faster I should go tanning and use this steriod cream that he gave me. The steroids helped ALOT but once I stop using them they come back. I found that tanning helped a little bit but I didn't see a drastic change in the spots. I decided to get a second opinion from another derm and he said I have PLC. He gave me a 10 days supply of Erythromycin and told me to use Elidel and to stop using the steriod cream because it's not good for you. Erythromycin and Elidel did not help me. The only thing that happened was I got a lot more spots and they are a lot bigger and redder than they ever were before. I have them mostly on my back and my legs but most of my spots are very large in size. I have 3 on my chest that are all about 1 to 1.5 inches long.

I have not had a biopsy done yet but I am getting one. My appointment isn't until next Friday and it will still take about 2 weeks after that to get the results they said.

I have a little bit of itching but I find that if i keep lotioning my body that takes care of most of the itch. I use Cetaphil lotion which works really well. My derm also gave me tetracycline to try since I read about that on here. However, he doesn't think it will work since Erythromycin and Elidel didn't work. I have been on tetracycline for almost 1 week now and I haven't seen a noticeable difference but I understand it takes quite a while to start working. My derm said the next step would be UVB treatment but I'm not very convinced that will make a difference either.

Recently I have noticed that instead of being a full red spot, a lot of my spots have turned white/pink in the middle and darker on the outside. Does anyone elses look like this also?

I completely understand everyones frustration with this issue. It is extremely embarassing. Especially in the summer months. The sun is supposed to be good for PLC but I don't want to wear shorts or any kind of clothing where other people can see because they automatically start asking questions and thinking I'm contagious. I also cant be in the sun if I'm using tetracycline. When I get really down about it I find I often want to resort back to the steriods because at least that got rid of them temporarily and no one could see them. But I have to talk myself out of doing that because I know its only a temporary treatment. They will come back just as strong as before when I stop using the steriods.

Thank you for listening to my complaints.

Michelle

Hey Michelle,

Yeah I know how embarrasing it can be.. I really hope the tetracycline works for you. Mine also developed around feburary. Something about the season maybe. The next summer I was really worried I would get spots again. I think when I had it alot of people stayed away from me because they thought it was contagious or something..

Thanks,
PLC4ME

Offline PLC4ME

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Re: Pityriasis Lichenoides Chronica
« Reply #198 on: Friday July 28, 2006, 05:48:13 AM »
Hey PLC4ME, thanks for the info.  You didn't have it very long, you are lucky.  My daughter got it when sshe was 2 and she is nearly 8.  They told me it should burn out by puberty.  Something happens with the immune system which changes from childhood to teenage hood I guess.  She is too young for tetracycline, because it can damage developing teeth.  It is not safe for children tot ake it until they are 12, so perhaps, if I am still dealing with this in a few years, I will have her try it at 12. 

I am so glad for you!  It makes me happy to know that there is an end in sight.  Did you ever get an occassional spot on your face?  My daughter occassionally gets them around her chin/lower jawline, but they are smaller. 

Please keep checking out our link now and then, because it is so refreshing to hear some good and encouraging news!

Sincerely,

J

Hey Jahan,

Yeah I got a some on my neck.. Mainly on my chest though.

PLC4ME

Offline Dianaoon

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Re: Pityriasis Lichenoides Chronica
« Reply #199 on: Friday July 28, 2006, 04:42:10 PM »
Dear Jahan:

thank you so much for your detailed reply,, and that excerpt from your daughter's doctor. It's good to know that we're not facing long term damage of any sort.

My son too, thankfully, is not sickly at all, apart from the spots.

The spots, at their worst, about three months ago, covered most of his body but not on his palms and the soles of his feet, nor scalp. Now, they are much sparser, just on his buttocks, a few on his arms and a little more on his legs and an occasional spot on his face (there are four now) The spots are very small, pinpricks, really, though at any time, two or three maybe larger and redder, but they are almost never angry, open sores.

Got my hubby to read your post too, and we've decided that we will stop the steroids once this course is over. we will change doctors too, if needs be. Topical steroids (right now my son uses elomet) don't seem to do much either way for the spots. We used Elidel for a while last year, it helped, but there was that scare with the mice and cancer so we stopped that.

does your daughter have allergies ?

As I said, my son tested positive (blood RAST tests) for egg and bananas at 20 mos, but we're told by the allergist he might have outgrown that. Having said that, we notice that he gets more spots when he's had too much junkfood, or just any non-home made food. As a consequence, most of the things he eats is homemade. We find that helps somewhat, though the spots really got bad three months ago, despite the careful eating. This was what prompted us to seek second opinions, and led us to the PLC diagnosis. We suspect that my son is sensitive to additives and preservatives, for which there are not tests, so we strive to keep his diet as unprocessed as possible, making it organic as much as we can. I've noticed adult sufferers saying they get relief from cleaner diets, but since i can't expect my child to chug the organic vege juices and munch on celery sticks, i do my best to let him have as much veges and grains as possible.

Thank you so much for your concern and advise and words of encouragement, it's comforting enough to know i am not alone,

Diana

he gets plenty of veges (organic)