Author Topic: Pityriasis Lichenoides Chronica  (Read 293144 times)

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Offline lindadiane

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Re: Pityriasis Lichenoides Chronica
« Reply #780 on: Monday December 21, 2009, 01:30:03 AM »
I hope all are doing well. I am about the same. Wishing you and your a happy holiday season and good health in 2010!

Offline skindiseasesucks

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Pityriasis Lichenoides Chronica
« Reply #781 on: Wednesday December 23, 2009, 12:09:22 AM »
I haven't posted in a really long time.  However, I do have some news.  So, I started seeing a dermatologist again and at first she put me on Tetracycline, which cleared up some of my spots, but not significantly.  My legs are still really terrible.  Regardless, I went back to her and told her the treatment did not work and requested some other drugs I had read about (methotrexate amongst them), and she was hesitant to prescribe anything that strong so she suggested an alternative, Accutane.  She put me on steroids for 2 weeks, and those really helped for awhile but they eventually ran out because they were a small course.  Anyway I finally got the approval for Accutane, and so I am hoping to see some results with it!  I have read the side effects and what not, and I am willing to take the chance.  Can anyone tell me how effective the tanning beds are?  I am taking a trip, and I hope to look semi-normal for that time so I was just wondering what type of success everyone has had?  I will not be on the Accutane until next month some time.  I will definitely post while I am on accutane if I see any results!  The good thing is my doctor is pretty familiar with the disease and she has told me that she has several other patients with the same problem!  Anyway, any advice on the tanning booths would be greatly appreciated, thank you!

-T

Offline lindadiane

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Re: Pityriasis Lichenoides Chronica
« Reply #782 on: Monday December 28, 2009, 02:52:21 AM »
Hi: The tanning beds help me but have not cured me. PLEASE let me know how you do on the Accutane. My current derm also does not want to presribe the Metho because he said it's REALLY bad for your liver. We talked about Accutane and he said there was not a great deal of success. However, another derm I saw many years ago said that was the second step they took...Accutane. I have found for me that natural sun is still one of the best meds. Have yours ever gone completely away?

Offline elseaeff

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Re: Pityriasis Lichenoides Chronica
« Reply #783 on: Monday December 28, 2009, 11:48:22 AM »
I have had rarely a day this past year when I didn't have PLC. I had breast cancer in December last year and it and the reconstruction of my breast has not been very fun. I do NOT use a tanning bed, I prefer to use a tanning booth where I stand up and get some suntan and not lay and stew in someone elses's juices. The improvement was nearly immediate.

Good luck!
Linda

Offline skindiseasesucks

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Re: Pityriasis Lichenoides Chronica
« Reply #784 on: Monday December 28, 2009, 08:01:22 PM »
Hi again, and thank you for both of your replies.  I will definitely use the stand up booth rather than the bed!  As far as my PLC ever going away, no never.  Honestly though, the way my dermatologist put it, we are going to fight it until it is gone.  I would like to believe that she is as committed as I am.  She said if Accutane does not work then we will take more extreme measures.  I have read on the web, after doing some research, that the best way to get rid of the thing is to use multiple treatments including the UV treatments.  However, I know that some of the medicines make your skin sensitive to the sun, so I guess it makes it that much harder.  I will definitely post my progress on Accutane if any.  I have faith that it might do some good!  I was reading up on the medication, and I read that the higher the dose the better the result, and it helps your skin regenerate faster!  In addition, the tetracycline did somewhat work so I am hopeful.  I am not expecting miracles, but at least some sign of improvement!  Anyway again, thank you for all of your advice.!   :)

Offline skindiseasesucks

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Re: Pityriasis Lichenoides Chronica
« Reply #785 on: Monday January 04, 2010, 11:32:03 PM »
Hi,

Just wanted to give an update, I went tanning last week twice for roughly 10 minutes.  I am super itchy now, but I see a vast improvement.  I plan to go 3-4 times this week and next to see what happens!  During the summer I remember my arms were almost completely clear.  I have also noticed that year after year, the PLC gets a little bit better so I am hoping that it dies out sometime in the near future.  I also started using Aquaphor because my skin is so dry from the cold weather & the tanning.  Anyway I am hopeful that by this time next month I will be clear enough to wear shorts!  California is not a place where you can wear long sleeves and not get hot so I am just pretty much praying!

Offline lindadiane

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Re: Pityriasis Lichenoides Chronica
« Reply #786 on: Wednesday January 06, 2010, 04:31:35 PM »
I get itchy from the tanning too. I am going to try the Aquapor. Where are you in CA? I'm in the San Fernando Valley and I die in the summer with long pants on. I also think my Pleva is SLOWLY improving year after year with flares from time to time.

Offline skindiseasesucks

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Re: Pityriasis Lichenoides Chronica
« Reply #787 on: Wednesday January 06, 2010, 05:12:56 PM »
I live in the San Gabriel Valley, and yes pants kill me in the summer.  However, I am determined to have a different type of summer this year!  The tanning is really helping me out so far, and my skin seems to be slowly clearning.  However, I know that with PLC it always comes back, so I ordered these enteric coated Bromelain tablets online that were used in a couple of studies that I researched.  I e-mailed one of the italian researchers, and he told me the patients took 40mg 3 times per day and tapered downward.  I could only find 300mg tablets that were enterically coated so I am going to start taking those as soon as they come.  My understanding is that Bromelain helps the immune system heal faster and acts as an inflammation reducer.  Right now I am taking the chewables just because.  I hope I get the Bromelain soon so that I can start taking it & see if I can avoid the Accutane.

-T

Offline lindadiane

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Re: Pityriasis Lichenoides Chronica
« Reply #788 on: Wednesday January 06, 2010, 10:17:48 PM »
I tried the Bromelain as well. I checked with my internist first. It did little but I was not using the enteric coated, nor was I taking them 3 times per day. Maybe the levels need to remain constant. Where did you order them from? I would be willing to try them again because I certainly did not have a bad reaction at all...I felt great when taking them. Where in San Gabriel are you? I'm in the West Hills, Woodland Hills area of the San Fernando Valley. Just wondering if we have something else in common. Always looking for the reason behind the bumps = ) Do you have allergies? How old are you?

Offline skindiseasesucks

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Re: Pityriasis Lichenoides Chronica
« Reply #789 on: Thursday January 07, 2010, 04:55:12 PM »
I tried the Bromelain as well. I checked with my internist first. It did little but I was not using the enteric coated, nor was I taking them 3 times per day. Maybe the levels need to remain constant. Where did you order them from? I would be willing to try them again because I certainly did not have a bad reaction at all...I felt great when taking them. Where in San Gabriel are you? I'm in the West Hills, Woodland Hills area of the San Fernando Valley. Just wondering if we have something else in common. Always looking for the reason behind the bumps = ) Do you have allergies? How old are you?

I ordered the Bromelain from Vitacost.com, and they cost me like $20 dollars with shipping.  They are 300mg, but I remember reading that you can take up to 3 a day of those, so I am definitely going to.  I am literally in San Gabriel haha, like the city.  I have really bad sinuses, well actually they have gotten better, and I also USED to have really bad allergies.  For the past 2 years my allergies have calmed down a lot.  The tanning has really helped me, my skin is clearing gradually.  I used my school's data base to find full research studies done on light treatments & Bromelain and it seems people have had good results so I am hopeful.  I am 24 years old & desperatly trying to find a reason as well.  I read in a study that there is a correlation between PLC & some virus, I forget the name of it, I will have to look it up.  Anyway, my plan is to take what I found to the dermatologist when I go see her this month.  I mean if my doctor won't do the research to try & help I am definitely going to & I am going to keep on bugging her until this thing goes away.  I have had it since I was 17 years old.

Offline lindadiane

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Re: Pityriasis Lichenoides Chronica
« Reply #790 on: Thursday January 07, 2010, 05:55:45 PM »
The virus most certainly makes sense because the antibiotics have not cleared anyone that I've heard of. I would LOVE to know the name if you find out. I've had mine about 8 years but I'm 50 and married which makes it a little easier. It would be really tought being young and having to deal with this. Keep me posted on any info you uncover. I too have allergies and bad sinuses! Hmmmm.

Offline scottey

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Re: Pityriasis Lichenoides Chronica
« Reply #791 on: Saturday January 09, 2010, 02:13:44 AM »
Ok, so last night I found out that my biopsy tested positive for PLEVA.  My dermatologist said not much is known about this condition and I really don't fit the profile.  I am a woman in my late 40's.  My research on the internet didn't provide a lot of insight into this disease either.  This rash just appeared out of nowhere about ten days ago.  I have always prided myself on being pretty healthy and having a strong immune system.  So far, this condition hasn't really posed any real problems, but the thought that my t-cells are attacking my skin is a little daunting.  And vanity aside, I hope I don't eventually end up one big walking rash!!  Of course, the doctor wanted to prescribe antibiotics and/or a steroid cream.  I am not that opposed to this course of treatment except that I would like to treat the internal cause as opposed to just treating the current issue (the rash).  From things I've read, it seems this course of conventional treatment could go on indefinitely!  And if toxins are the culprits in the inflammatory process, I don't want to add more through medication.  Is there anyone out there that has sought alternative therapies - body cleanse, lymphatic drainage, natural supplements, diets that target immune function, acupuncture, etc.?  Thank you - any advice at this point is greatly welcome. 

Offline skindiseasesucks

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Re: Pityriasis Lichenoides Chronica
« Reply #792 on: Saturday January 09, 2010, 05:22:53 PM »
The virus most certainly makes sense because the antibiotics have not cleared anyone that I've heard of. I would LOVE to know the name if you find out. I've had mine about 8 years but I'm 50 and married which makes it a little easier. It would be really tought being young and having to deal with this. Keep me posted on any info you uncover. I too have allergies and bad sinuses! Hmmmm.

Hi again, I looked it up and it is Human Parvovirus, I think sometimes referred to as "red cheek syndrome".  Apparently it causes skin rashes & treatments for it include immune suppressive therapy according to the web.

Offline lindadiane

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Re: Pityriasis Lichenoides Chronica
« Reply #793 on: Monday January 11, 2010, 03:15:19 AM »
The article said Paraovirus causes Pleva? Where did you find that? Can you post it? What a great little researcher you are = ) I have not heard that one before. Most people recover from Parvovirus....is the Pleva some residual result? I do recall having painful joints for a few months before this came on.  My thumbs were cracking alot. Also, many of us had dental work before the onset. Did anyone else experience any of these symptoms?

Offline scottey

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Re: Pityriasis Lichenoides Chronica
« Reply #794 on: Friday January 15, 2010, 06:53:55 PM »
So I've had PLEVA for about two weeks now and last week I started taking Acyclovir (Zoverax) for a cold sore on my lower lip.  Low and behold the stuff is also drying up my PLEVA!!  Too soon to tell if the medication is working or my PLEVA is just doing its own about-face, but I will keep you all posted.  I have spent HOURS researching this disease via message boards and medical websites and there does seem to be some correlation between this and herpes.  So maybe that's why a herpes drug is working to eradicate it - at least for me.  Don't know, but I am happy to be loosing my spots!  Anyone else out there used/using Acyclovir with any success?

Offline lindadiane

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Re: Pityriasis Lichenoides Chronica
« Reply #795 on: Friday January 15, 2010, 11:18:17 PM »
I tried it many years ago and it did not help. But yippee for you...glad someone is making progress = )
Found another site http://www.topix.com/forum/med/dermatology/TNKKA4F8HLLBBOVB0/p18#lastPost
where there are lots of Pleva people. Also, one of them brought up a good point...did anyone else have a tetnus booster or any immunization prior to their outbreak. One guy did, and I had one just before going to Europe the year before I broke out. Just wondering.There is some interesting stuff at the other site. Take care.

Offline PLCBrazilmom

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Re: Pityriasis Lichenoides Chronica
« Reply #796 on: Wednesday January 27, 2010, 12:45:31 AM »
Hello Lindadaine

I've been lurking here in the forum for some months now but this is my first post.

My daughter developed PLC almost immediately after taking a flu shot. It was like one or two days later, so for me there must be a connection.

She had had all the regular vaccines, but never a flu shot. And that did her in.

She is 10 years old and we have been struggling with the disease for 6 months now. She took a 2 month course of antibiotics which helped partially and moved on to UVB narrowband. We've been doing it for about 3 months now. About a month ago she was almost completely clear. But then new lesions started cropping up, even with her ongoing light treatments, right now she looks halfway on the path of a full breakout.

I don't believe there is much talk about a genetic link in PLC, but in our case, there seems to be one. Her grandfather (my father) also has a mild and somewhat atypical case of PLC. Her case is more severe, unfortunately.

I'm  praying to God every single day that her PLC will go away. But starting to lose hope.

My sympathy and caring thoughts for all of you out there, parents and sufferers alike



Offline emmamae

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Re: Pityriasis Lichenoides Chronica
« Reply #797 on: Wednesday January 27, 2010, 01:46:50 AM »
Hi Scotty and BrazilMom, My daughter was diagnosed with pleva when she was 4. She was very lucky and had it only for a short while. Her pediatric derm did tell me that while she had the full blown pleva she was not to have any vaccines. She has not had pleva now for  over a year and she is telling me now it is OK for her to get vaccines, however, she wants me to make an apt with her 2 weeks after getting a vaccine.  This of course does not give me much confidence, and she of course cannot tell me if the vaccine will or will not trigger her pleva to come back. She did come down with Chicken pox this October and her derm put her on acyclovir to try to keep the virus down, this did help her Chicken pox from being out of control and no her Pleva did not return.
BrazilMom, I know how you feel and how scary and hard it is to see this in your child. I was in tears daily and also felt so frustrated. In Children it isn't suppose to last as long. I read on another post sight a few other people who got it shortly after a flu vaccine. My daughter hadn't had any recent vaccines prior to her outbreak, but it does worry me that having her boosters will cause it to come back. Who knows? I also thought Chicken pox would cause it to come back and it didn't, but maybe the acyclovir helped?

Offline lindadiane

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Re: Pityriasis Lichenoides Chronica
« Reply #798 on: Thursday February 11, 2010, 02:20:49 AM »
Wondering if the Accutane is working?? How's everyone doing?

Offline pokeypup

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Re: Pityriasis Lichenoides Chronica
« Reply #799 on: Saturday February 13, 2010, 10:05:44 PM »
Hi All.  I haven't posted on this forum in a while, but I thought I'd give an update. 

Brief background...I am turning 30 years old, was diagnosed via biopsy in April '07.  I am currently seeing a dermatologist who was voted one of the top 50 in Seattle.  I was covered neck to toe with PLC.  I was initially started on Tetracycline with NO improvement.  I was then put on methotrexate 10mg/week, which helped ALOT but the side effects of the medication sucked.  My liver enzymes were elevated as a result of the MTX, which indicated some damage to my liver, so my derm decided to take me off methotrexate.  We instead tried UVB phototherapy.  I was doing 3x/week in a stand up booth and was paying $25/session (YIKES!!!!) which was very expensive.  My PLC initially got worse before it started getting better while doing phototherapy, which was expected.  I did slowly see significant improvement.  I was VERY tan, but phototherapy was working.  I was also VERY, VERY itchy for the first 3 months. To help with the itchyness, I put on lots of lotion (aquaphor) before and after each session.  I was still however getting small crops of PLC while on phototherapy alone.  Which brings me to where I am right now.

I am currently doing a combination of phototherapy and methotrexate.  5mg/week of methotrexate, and lower joules/time with phototherapy.  Basically, I am doing a little bit of both which is helping alot.  The new dilemma I have is that phototherapy is getting too expensive, so I am going to talk to my derm about going to a tanning salon instead. 

I understand what everyone is going through on this forum.  My prayers to all.