Author Topic: Pityriasis Lichenoides Chronica  (Read 553365 times)

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Offline galpal

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Re: Pityriasis Lichenoides Chronica
« Reply #560 on: Monday December 15, 2008, 02:11:40 PM »
I never thought about immunizations and pleva.  It does make sense to pull back (on everything) when an outbreak is happening.  Since she is good right now, I would give her the boosters while you can. 

I'm worried about this cold weather, too.  Is it just the lack of sun or the exposure to so much infectious stuff that triggers it in the winter?  Does the immune system get so overworked that it makes mistakes and attacks self?  I don't know but the last six months have been heaven without this stuff.  I'm learning as much as I can about the tcell, etc.  There is no cure but I'm looking for patterns of triggering agents.  Can't hurt.

Good Luck.

Offline emmamae

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Re: Pityriasis Lichenoides Chronica
« Reply #561 on: Tuesday December 16, 2008, 12:15:00 AM »
Hi, I notice on this board  that there is not alot of mention of the connection to tcell lymphoma. It was HUGE concern to me when my daughter first was diagnosed with this.  My daughters derm said if she was going to get it, it would have happened within months of that first outbreak and she had us come in every 2 weeks to monitor etc.  Now that she is spot free I don't know if  she is in the clear of tcell of if this means she has a chance again with another outbreak. Her derm left me with the impression if she was to get it, it would have happened then and quite fast. She works for UCSF and  has been dealing with pleva/plc for 25 years. She is a pediatric derm and has had only 1 case of someone who did have tcell lymphoma. She did mention that the patient who did have it, had a really, really bad case that never went away or let up at all. It is pretty scary. I would be very interested in hearing what you have read on that.

I too look for triggers and think about that as well. Especially with young children who are just building their immune systems. She has had about 3 colds since her initial outbreak and so far so good. I get a little anxious when she is sick and being in preschool ugh!

Offline jpco

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Re: Pityriasis Lichenoides Chronica
« Reply #562 on: Tuesday December 16, 2008, 08:41:36 PM »
I was curious on what the effects of Cannabis are on P.L.E.V.A. I am aware of the health effects of smoking marijuana, but I am just wondering if it has any positive or negative effects that appear strictly to users with P.L.E.V.A.

Offline Looknhelp

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Re: Pityriasis Lichenoides Chronica
« Reply #563 on: Thursday January 22, 2009, 03:54:18 AM »
Hey Emmamae (and everyone!),
  I haven't been on here in a little while.  I first found this site when my husband was diagnosed with PLEVA in Sept.  He was told it was everything from bugbites to possibly MRSA.  The family practice docs got it wrong (which I now know is common), but a local derm. told us about Mucha Habermann disease (basically another form of PLEVA, just on other side of spectrum).  My husband was biopsied and had those results transferred to a hospital in a bigger city near us.  The first derm warned my husband that some doctors' theories say that this break-out can indicate types of cancer.  When we got the results at the hospital, from a doctor that had a little more experience in PLEVA/PLC, he told us that those biopsies would indicate cancer if it was present.  He said it was not.   He also said that this usually clears up on its own, but did give my husband tetrycycline to take.  My husband has been on this since then, with a couple weeks break after the first bottle.  We didn't believe it was too healthy to stay on antibiotics for a very extended amount of time.  He began to clear up after a couple of weeks on the antibiotic.  I must also state that we tried everything that I have heard from the hours of research I have done here and on other sites.  These are all that we did....my husband changed his diet (cut out wheat products, which is in practically everything you eat...we stuck to lean meats and veggies mostly for a couple of weeks).  He did a detox that we got from a drugstore (I was told by a PA to make sure he got a detox system that was pharmaceutical quality, otherwise if you get one from the shelf at Walmart or somewhere, they are full of fillers like sawdust!!).  He also stopped smoking.  That was a HUGE effort for him, but he did it!  He went once to the tanning bed, for about 3 or 4 minutes.  We did all of these things around the same time, and included prayer (all that we could get!).  So it's hard to say exactly what cleared him...I tend to think prayer helped the most!  He has been clear for a while now, but he just developed a bump about a week ago, on his arm that we are watching.  He said it could be the same thing...but I must say, other than the smoking, he is back to the same routines.... only did the diet and detox thing for about 2 weeks.  So, that's the info I have.  Hope it helps someone.  I don't know about the things we tried, but I think it is worth a shot.  We are getting back to praying hard for the recent bump...guess we'll see.

God Bless,
April

Offline pokeypup

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Re: Pityriasis Lichenoides Chronica
« Reply #564 on: Thursday January 22, 2009, 09:06:53 AM »
Hi everyone. My name is Mary and I've had PLC for 2years now. Was on MTX (methotrexate) for a year and a half, which worked, but I hated the side effects and was scared for my liver.  I have since started phototherapy 3x/wk per my derm's reccomendation.  I've had 10 treatments so far and I think I might see some results ???  But the problem is, I am soooo itchy.  My PLC was NEVER itchy before, but since i've started phototherapy, my body is so itchy. Was wondering if anyone here has had success with phototherapy. I need some hope please. My PLC has spread to my face   :(  I am so depressed and I am even thinking of going back on MTX and learning to live with the side effects....HELP!!!

Depressed and Frustrated in Seattle,

Mary  :'(

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #565 on: Friday January 23, 2009, 02:24:57 PM »
Looknhelp: PLEVA/PLC comes and goes. You've tried a lot of things. It's good that your husband stopped smoking, but that would have no effect on his PLEVA/PLC. As for diet, diet and "cleansing" (I assume you mean laxatives) don't have any effect. Long term tetracycline therapy is generally safe, but may not be effective. The data are not conclusive.  UV exposure is clinically demonstrated to work, but 3-4 minutes wouldn't have any effect. You have to get regular exposure to enough UV to actually tan you. I suspect your husband's outbreak just went into remission. If it comes back, he should head to the tanning salon.

Pokeypup: What kind of UV therapy are you doing? I had great success with phototherapy. The best is actual sunlight, but tanning beds are a good substitute in wintertime. Nothing else worked for me, but we didn't have MTX back then. As for the itchiness, I had that too. Sun tanning makes your spots itchy. It goes away when the spots go away. Have hope: UV treatment has an almost 100% remission rate in the few clinical trials they have done. Three weeks is short a time for results, so be patient. Or take a vacation in a sunny clime. You sound like you could use one.

Offline bhmars

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Re: Pityriasis Lichenoides Chronica
« Reply #566 on: Friday January 23, 2009, 04:14:53 PM »
Looknhelp and pokeypup:
I have had PLC for almost 3 years now and the only thing that has worked for me is going to a tanning salon.  I go on a regular basis usually 2x's per week and I keep a base tan.  It works.  I would say I am 99% better!  I do have dry patches where there were spots but for the most part I am almost clear.  I started out going every other day to the tanning bed. Starting w/ 2 mins.  then increasing 2 mins each time until I had a good base.  ( I don't have any on my face so I usually keep my face covered but if you have it on your face I would only expose your face for 3-4 mins.)  I now go 2 times per week and I stay in the bed for 14 mins.  I know that everyone says tanning beds are terrible for you but my derm. recommended that I go.  Just don't get yourself burned because that can make the PLC worse!  Use lots of lotion too... it seems to help my dry patches.  Before tanning, I tried oral steroids, steroid creams, and many other topical creams nothing worked!  Tanning has been a blessing!  Just be sure to always go to your derm for regular skin cancer screenings. Good Luck

Offline Looknhelp

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Re: Pityriasis Lichenoides Chronica
« Reply #567 on: Saturday January 24, 2009, 03:38:21 AM »
Well, my thoughts on the things that we have tried is that something out there is causing it...In the research I have done, I found a few similarites with psoriasis, though there were some definite differences.  This led me to a conversation with a coworker that suffers from psoriasis.  She has found in the years that she has suffered, that diet makes a huge difference in her skin, and how bad it gets.  When she cut out wheat products, she noticed a significant improvement (not complete healing).  So we tried some changes, and things did get better.  I'm sure there could be controversy over whether one thing or other works or does not, but I did not want to sit by and try nothing and watch my husband suffer the embarrassment of this disease.  We felt like if we made the changes, and nothing happened, then at least we had done what we could control...it remains to be seen what will happen from here on.  I have kept in contact with a woman that has had this disease for years, but waited several years to do anything about it.  She seems to think that if you catch it early enough, maybe it can be controlled.  Who knows...this is obviously something that we don't know much about, but there has to be something triggering it in those that suffer.  I feel it is important to list as much info on here, from how it began, to how we are treating it, to the lifestyle during suffering.  Maybe we can find a common trigger.

Offline pokeypup

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Re: Pityriasis Lichenoides Chronica
« Reply #568 on: Saturday January 24, 2009, 03:52:04 AM »
Thanks everyone for all the support...it's so great to communicate with people who understand!  :) 

BLX42: I am currently doing the narrowband UV phototherapy at my derm's office.  I stand in a light box pretty much.  I've had 11 treatments so far.  I was on methotrexate prior to starting phototherapy, so my derm wanted to start me low on the phototherapy.  My last session was 2 min 52 secs.  I think I will be at 3 min next week.  How long did it take before you REALLY started seeing result from phototherapy?  I guess I am a little impatient, but I was told the PLC gets worse before it gets better.  When I was on MTX, I saw improvement in two days!!! 

I just want reassurance that what I am doing is worth it.  I am only 28 years old and have suffered with this since I was 26.  PLC has consumed 2 years of my life!!! :'(

My PLC has spread to my face and I have been exposing my face while doing the phototherapy.  However, now I have brown spots ALL over my cheeks, on my eyelids and in between my eyebrows.  Do these brown spots fade anyone?  Need some hope please.  I am trying so hard to be strong...   :'(  but it is such a hard disorder to cope with.  ANY input would be greatly appreciated.

Yours Truly,
Mary

Offline pokeypup

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Re: Pityriasis Lichenoides Chronica
« Reply #569 on: Saturday January 24, 2009, 03:59:41 AM »
Sorry...one last question to add to my last post. 

I am doing the UVB narrowband phototherapy at my derm's office.  It's a stand up light box.  Is there a big difference between this type and a regular salon tanning booth?? 

Thanks, Mary

Offline elseaeff

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Re: Pityriasis Lichenoides Chronica
« Reply #570 on: Saturday January 24, 2009, 08:27:02 AM »
Dear Mary,

There is a huge difference in the light box used at your derms office and the stand-up booth at the tanning salon. The light box at your derm's office is very expensive to use and can be specifically set to the exact specification of light that the derm has 'prescribed,' such as narrow-band uvb.

I was driving 80 miles round trip 3 times a week and paying a $20 copay each time to use the derms light box. Considering the cost of gasoline and the copay, i was going broke trying to keep my PLC in check. I (along with the rest of America) was concerned about the cost of my treatment and mentioned this to the nurse who prepared the light box room for me.

The nurse told me to ask the derm about using a tanning booth. My derm told me that using a tanning booth was completely acceptable if I went every day and slowly worked my way up to 5 minutes a day and stayed no longer in the booth than 5 minutes. She advised against using a tanning bed as you could never be sure what kind of germs you might be laying on/in.

This was great! It only cost $25 month to join the tanning club for unlimited use per month! Since it was just down the street, there was no exorbitant gasoline costs! I carried a tube of Chlorox Cleanups with me to clean the floor of the booth and stood on towels (provided by the tanning club) to be sure I didn't pick up other's germs. I started out with 3 minutes for a week, then went to 4 minutes a week and finally 5 minutes a week. I stayed at 5 minutes a week for as long as I continued to go. If I had to stop going (I have MS and some of my meds caused sensitivity to sunlight), I had to start over again at 2 minutes and work my way up to 5 minutes again. Though I tan easily, I never went past 5 minutes a day. I had complete success using the tanning booth. It was important to use a tanning booth cream to keep my skin from drying out while tanning. During the summer I would just lay out on my patio for the same amount of time, then put on 45 SPF sunscreen and stay under the gazebo, umbrella or shade of the tree or house.

It is so very important never to burn using the tanning booth or using real sunlight. I think the worse I ever felt was the one time I had burned myself without knowing. Complete misery beyond belief! Not only was my PLC brought under control, it also helped my SAD, a disorder I suffer from the lack of sunlight in the winter months.

Remember that you still get sunlight on cloudy days and when you are in the shade when sitting on a patio (sunlight bounces off the concrete). Last year my husband got me a large umbrella that easily rolls around the yard so I can work in my gardens and still be in the shade.

I also discovered that acrylic nails are very thick and cannot break the skin when you scratch. Many is the time when I've awakened in the night tearing at my skin because of the itch. Having acrylic nails now keeps me from scratching my skin open. There are also bathing gloves sold (usually found in the same place as the tulle bathing puffs) that are made from a scratchy material that I have worn to bed because I can rub my legs with them and it feels great, but I'm not scratching the skin open.

I am curious to see what is going to happen in the next few months. I was diagnosed with breast cancer (as if having MS and PLC isn't enough) and had a Mastectomy weeks before Christmas. Because I had two tumors in one breast over the size of 1cm, the preventive measure of 6 months of chemotherapy is recommended to assure all cancer cells have been destroyed. If only one cancer cell escapes detection. cancer can form elsewhere in my body. So, I will let everyone know what effect the chemotherapy has on my PLC.

I have had PLC for 4 years now, it never goes away, but has limited itself to my legs for the most part. The 'cycle' of PLC - from papule through to a type of psoriasis, patches of cycles are happening all over. At the age of 53 I had hoped it would have been done by now. I have to inject an interferon cocktail for the MS every week and take many other medications due to side effects and exacerbations of the MS and don't know if that has prolonged the life of the PLC.

I hope this has answered your question Mary (and then some). Please don't hesitate to contact me with any other questions. Good luck and have a blessed weekend!

Elseaeff  :o

Offline pokeypup

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Re: Pityriasis Lichenoides Chronica
« Reply #571 on: Sunday January 25, 2009, 02:19:51 AM »
Dear Elseaff,

Thank you so much for your response.  Luckily, I live in the city and less than ten minutes away from my derm's office.  I also don't have to pay a copay with each session.  I just have to meet a maximum deductible of $150.00 for the year.  My insurance is really good about this whole disorder...the only one thing that is going right!!! 

Curious though....when you say there is a huge difference between a tanning booth and phototherapy at the derm's office, would you say it's better to go the derm's office and do phototherapy? 

Did it also leave you with brown spots? If so, how long do they take to fade?  I've had clear, flawless skin on my face my entire life...RARELY did I ever even get a pimple!  (I am absolutely humbled now!!)  My PLC spread to my face, primarily my eyelids and I have been exposing phototherapy to my face...except my eyelids as I need to cover them with goggles.  So, with the phototherapy, it's left brown spots on my cheeks, which actually looks exactly like acne minus the bumps and redness.  I just need reassurance that this will at least fade, even A LITTLE.   

Pls keep us updated on how chemotherapy goes with your PLC.  I think methotrexate is a type of chemotherapy, which worked for me at one point, so I wonder if it will at least rid you of your PLC. 

I am so sorry you have so many obstacles to overcome.  I'm so glad to be in touch with you and I will certainly keep you in my prayers.

God Bless, Mary

Offline amy1194

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Re: Pityriasis Lichenoides Chronica
« Reply #572 on: Wednesday January 28, 2009, 03:51:16 PM »
 :'(

Offline amy1194

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Re: Pityriasis Lichenoides Chronica
« Reply #573 on: Wednesday January 28, 2009, 03:56:29 PM »
3 days ago i got diagnosed with pleva, after a skin biopsy. I am 34 years old.
i ve read everything everybody posted in this site and i am so
dissapointed, you have no idea.
i have an appointment with my dermatologist today to figure out
how we are going to fight it.
you people mention about erythromicin, tetracyclin, doxycline, z pack,
how do i know which one is going to work?
I can not believe that there is no cure for that? how can this be?
how is it that scientists can cure cancer, they can cure all kinds of stuff but
they can not cure this freaking skin disease?!

Offline elseaeff

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Re: Pityriasis Lichenoides Chronica
« Reply #574 on: Wednesday January 28, 2009, 04:25:39 PM »
Hello there!

It's not that they can not cure this disease, there just aren't enough of us with it for the pharmaceudical companies to make a profit on making something to cure it. Once they go through research & development, then the requirements of the FDA, the will lose money on the very little amount of people who suffer from this quirky disease than of others. I also suffer from Multiplse schlerosis. There was no treatment or medication for that disease until the mid '90s and more than half a million people across the US alone suffer from it. There are no where near that amount of people who suffer from Pleva and/or PLC.

Unfortunately we are caught by bureaucratic red tape. The can't make money off of us, so they don't make the meds to help us.

Regards,
Elseaeff

Offline emmamae

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Re: Pityriasis Lichenoides Chronica
« Reply #575 on: Thursday January 29, 2009, 12:56:05 AM »
Hi Amy1194, Yes there is no cure and everyone responds different to pleva. I personally think that the sooner the diagnosis, the sooner you can try to fight it. My daughter was diagnosed within two weeks of having it. She only had it for 6 weeks. I still don't know for sure if it will never come back or if she is just in remission.( She hasn't had any spots or anything for 4 months now)  Her derm said "it has left her body". I think her case is unusual. We did zpac (which is azithromycin) she did 2 rounds of this, you take it  for 6 days and it stays in your system for 2 weeks. She was also prescribed a topical steroid cream. I put it on her back and I swear overnight her spots seemed to fade from that cream. Now, to this day, I don't know for sure if the cream or antibiotics worked or if the pleva just left her body. ( They think it may be an auto immune disorder and she had some weird virus and her body didn't respond right and when the virus left etc, the pleva does too). Her derm said stuff like, her immune system must have just kicked this out. I asked her, does she know if it was the meds or just how long it lasted on her body and she didn't know. My daughter is only 4, I also heard that in children, it does suddenly just go away sooner than in adults.  The one thing that her derm told us and that EVERYONE seems to agree on, is the sun. Get as much as you can. She told me to have my daughter run around naked in the back yard in the sun everyday for at least 10 min unprotected. I'm sorry I don't have any better news for you. It does go away in some people and for most people, the initial outbreak is the worst and then it seems to come back a little less. Also, I think stress can also be bad for it. I know how upset you must be feeling, I was devastated. It is scary and especially that they don't know much about it.

Offline pokeypup

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Re: Pityriasis Lichenoides Chronica
« Reply #576 on: Thursday January 29, 2009, 09:01:38 AM »
3 days ago i got diagnosed with pleva, after a skin biopsy. I am 34 years old.
i ve read everything everybody posted in this site and i am so
dissapointed, you have no idea.
i have an appointment with my dermatologist today to figure out
how we are going to fight it.
you people mention about erythromicin, tetracyclin, doxycline, z pack,
how do i know which one is going to work?
I can not believe that there is no cure for that? how can this be?
how is it that scientists can cure cancer, they can cure all kinds of stuff but
they can not cure this freaking skin disease?!

I am so sorry to hear of your diagnosis.  Just wanted to let you know you are not alone. :)

Offline elseaeff

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Re: Pityriasis Lichenoides Chronica
« Reply #577 on: Thursday January 29, 2009, 04:14:08 PM »
Dear Amy,

You are not alone in your dismay at not having a cure for this disorder. I am 52, and on top of having PLC, have MS, Fibromyalgia, chronic depression, panic disorder, and and cancer. I think there is a target painted on me somewhere...

As I earlier pointed out, it all comes down to the almighty dollar. There aren't enough of us with PLC/Pleva to make it worth the time of a pharmaceutical company to spend the money to bring a drug to market, so why bother? This site covers many countries, so I know there is no cure in other countries, either.

Sunlight seems to be the best cure, but everyone seems to have a different number for the time of sunlight permitted. Perhaps it's because they live in different areas of the country. 10 minutes of Mi sun is comparable to 5 min of Richmond sunlight.

I must take many drugs due to my many maladies and several have a sensitivity to sunlight. So, I use a steroid cream and my own 'therapy' developed after nearly 4 years of having PLC.

It is exasperating and seemingly unfair that we must go without any kind of medication at all. But then, more than 400,000 people suffer from MS in the US alone and there was no treatment or medication available for this crazy illness until the mid-'90s! Go figure. The medication for MS costs more than $1.000 a month and though there's some help for it, it doesn't look like that will change for awhile.

There are many good ideas on this post. All I can do is to tell you NEVER allow yourself to get sunburned (ouch to the 10th degree), never take a hot shower (no matter how tempting it is) and always keep your skin moisturized. Don't break the skin if scratching and try not to scratch. All of the tubes of anti-itch meds that your derm will prescribe I have found to be too thick and tend to clog your pores, making the itch worse. Do not use any of the oatmeal bath products to stop the itch, it will dry out your skin.

I usually take a warm shower and, before drying off, rub in a generous amount of baby oil gel. This keeps the moisture in my skin as long as is possible. After I've rubbed the gel in thoroughly, then I finish drying off and lightly dry off the remaining oil that hasn't soaked into my skin. I use a very light lotion during the rest of the day and night, Original Eucerin Body Lotion and right before putting my pajamas on I put a thin coat of lavender oil (found at The Body Shop in person or on line) that is very light and uses carrier oils such as flax and grapeseed oil, etc.). It usually soaks into my pajamas as well as myself, but it keeps my skin moisturized and doesn't itch very much at all.

When I itch vary badly, I use a 0.05% Fluocinonide Cream, a steroid cream (I tried many before I found this one - not the oil, the cream) and when I take my pain medicine for the Cancer, it will make me itch and I take Hydroxyzine HCL, an antihistamine that aids in my itch (and makes you sleepy).

Best of all is that I get my nails done with acrylic, which is much thicker than your own nails. It is impossible to scratch your skin open with acrylic nails!

Men, have no fear, you need not get acrylic nails. You can get the bath gloves that are sold in the same area of the store as are the tulle bathing puffs. They look like regular gloves, but if you feel them, they are scratchy and are meant for exfoiliation. They will feel wonderful being rubbed on your itch, and will not break the skin.

Soaking in a bath of bath salts to exfoiliate the dry skin, followed by oil to replace the dry skin is a treat.

Other than that, I can sit under my gazebo and get just enough sun to help my skin and not burn or cause trouble with my medicines.

Hope this helped a little. I've got an email into my derm asking what the chemo will or will not do to my PLC. just curious.

Take care, good luck. Have a blessed week and weekend!

Elseaeff

Offline BLX42

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Re: Pityriasis Lichenoides Chronica
« Reply #578 on: Thursday January 29, 2009, 04:46:07 PM »
3 days ago i got diagnosed with pleva, after a skin biopsy. I am 34 years old.
i ve read everything everybody posted in this site and i am so
dissapointed, you have no idea.
i have an appointment with my dermatologist today to figure out
how we are going to fight it.
you people mention about erythromicin, tetracyclin, doxycline, z pack,
how do i know which one is going to work?
I can not believe that there is no cure for that? how can this be?
how is it that scientists can cure cancer, they can cure all kinds of stuff but
they can not cure this freaking skin disease?!

The most effective treatment is sunlight. In the few clinical trials it igreatly mproved or completely cleared virtually 100% of the patients. It's not a cure, but it gets rid of the symptoms. So cheer up. There are worse things in life than having a nice tan all the time. The derm that finally treated mine effectively recommended an ordinary tanning salon. Cheap. Effective. It is a first line treatment for the disease.

As for antibiotics, there is a temptation to treat everything with a pill or a cream these days, but these do not have a very good clinical record. They may seem to work, but since the disease comes and goes, that seeming effectiveness may be an illusion. MTX (methotrexate) apparently does work (see above) if you're willing to put up with real side effects.

Whether drug companies are interested or not is irrelevant. They haven't been able to cure the common cold either, and that would be a real money-maker. PLEVA/PLC is very rare, which means most derms have only seen a case or two, and clinical trails are difficult.

Offline PLC girl

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Re: Pityriasis Lichenoides Chronica
« Reply #579 on: Saturday February 07, 2009, 11:46:54 PM »
I had my first outbreak in 1991 and it lasted 5 years until i was acutely ill and hospitalized with ischemic colitis, when the rash completely left and did not return until last month. It's biopsied as PLC again, but this time very pruritic on my neck. I'm going to start tanning again, I'm taking bromelain capsules, and i just started 6 weeks of doryx. I became gluten intolerant last year and was wondering if anyone else is gluten intolerant, too?