Pityriasis Lichenoides Chronica

[lindadiane]

PLC 123 I have noticed the same thing. I will break out after eating chocolate but I am also allergic to it. And I have also noticed a correlation with a little cold or sinus thing when I have a break out. Interesting. Now if we can just find a treatment or cure!!

[mellanie76]

hi! i went  to the derm and he put me on doxycycline and cutivate and im hoping this will help a little. its sooo frustrating to find any derm that even knows or have a patient with this skin condition. i would like to try the tanning salon but im frightened since that whole thing on the news how bad it is too do that. any suggestions? anyone had luck with tetracyline and how long do u have to take it. im currently just taking 100  mg a day. is that too low? i am  on it for a month.

[lindadiane]

My derm had me do four cycles of it and it did nothing. You cannot go for light treatments while taking it.

[elseaeff]

Thanks so much for the welcome everyone. 

I have started the minocycline and am using bactroban cream. I am hoping that at least some of the lesions may clear up. I seem to have many more lesions than others describe. Perhaps some of the lesions are much worse because of the scratching and perhaps staph. A biopsy of two can't assure that all 40 or so aren't infected.

This is me being optimistic.

I wonder if others have had or know of other illnesses I may have that could be suppressing my immune system, the treatment of which might help my PLEVA? I realize there is a huge list of diseases and disorders that suppress the immune system but I wondered whether you all have found any particular ones that seem to connect to PLEVA?

I am grateful that I am dealing with this as an adult. I am sure it is much more difficul to help a child cope with this (I know many of you are here with children with PLC or PLEVA).

dear Kate,
I have had PLC for 5 years now. I also have Multiple Sclerosis, a disease of comprmised immune system. I also have cancer. I had the MS before I contracted PLC, and the cancer last year at this time.  It's ironic that I had my mammagram 2 weeks ago, a year to the date of having it last year and today I received a letter from the hospital where I had the mammagram taken telling me that I must contact my surgeon as soon as possible, they've found suspicous calcifications, just like last year.  Sigh.

Regards,
Elseaeff

[Kate003]

I had to go off of the minocyclin (sp?) because it made me nausous to the point of debilitation, dizzy, gave me blurry vision, left me even more exhausted then I already am, and finally I nearly fell down the stairs. It did help to make the skin lesions less inflamed and less crusty - particularly the ones on my face. I was then switched to Doxy and I had most of the same side effects. Now I am on Orecea which is essentially a much lower dose of Doxy. It isn't making me sick but also doesn't seem to be helping the lesions and I have some new ones.

I have to go for some major blood work to test for other autoimmune disorders. I have had muscle weakness, fatigue, joint soreness, some swelling in my hands and feet, and multiple allergies and food sensitivities for years but have never gotten a doctor to take it seriously. Now that autoimmune is obviously on the diagnostic table, suddenly the symptom dots are connecting. So I am waiting (with much anxiety) to see what comes of the blood work.

[mellanie76]

just curios, did any of u girls get tested for tcell tcr genes when  the doc found out u had plc? mine did, but i wasnt suprised becuz i did read that plc is a benign t cell lymphoma. how do i know when the rashes are getting better? does the rash stay  pink for a while?  i have been taking cutivate  cream for a week now and im hoping it  helps. thanks gals!

[pokeypup]

My main question is...has anyone noticed that it is hormone related? 

Hi Turtledestiny00.  I've always thought my PLC is hormone related.  Right before I was pregnant with my first child, I started getting PLC like bumps which resolved on its own and I was never seen by a derm for that.  Shortly after I gave birth, I had a mirena IUD put in.  The mirena releases a small amount of progesterone and needs to be replaced every 5years.  Right around the time my IUD was due to be replaced, my PLC showed up.  I don't know if there's any relation, but believe me, since my diagnosis in 2007 I have over analyzed EVERYTHING. 

Take Care.

[lfn]

I don't seem to see any significant changes in my skin since taking Bromelain. But, I will keep my hopes up. I was reading more on T CellLymphoma and it seems like there are some similarities to PLC. I know others have mentioned it before in this forum, what do you all think?Information on T cell says to take a drug called psoralen as part of the treatment.

[elseaeff]

 
Greetings to all from Richmond once again!

For those of you who are new here, I have had PLC for nearly 5 years now. I was dx'd with MS in 1998 and must inject interferon every week for the MS. I don't believe the interferon has any impact on the PLC, good or bad, since I had been on the interferon for 7 years before I began to break out. However, interferon is a very strong and nasty drug and it makes me very ill every week when I inject it. And, when I inject it (intramuscular) I get "flu symptoms" which are about 20 times the force of a regular flu. And every week when I take the injection, my PLC goes crazy. The interferon causes me to be ill for 25-30 hours, temps about 103F, aches and pains like I've been hit by a bus, and my legs are once again covered with the pustules. I rarely get them on the inside of my arms or in my hairline, but my poor legs turn purple with the amount of PLC there.

lfn -- T Cell Lymphoma is one of the worse cancers you can get. PLC is in no way, shape or form related to that cancer. Please do not try to self-diagnose yourself. There is nothing worse than doing that and finding out you've been wrong. Psoralen is a form of chemotherapy, overkill for PLC. My daughter in law's youngest brother was diagnosed with this disease 2 years ago and he's had 8 tumors the size of pumpkins removed, but they grow back. He's been on chemo for the 2 years, but it doesn't even maintain the status quo anymore. Please do not scare anyone here with self-diagnoses that have nothing to do with PLC.

Turtledestiny00 -- I don't believe the PLC is hormone related. I had a radical hysterectomy in 1995 and have no ovaries, no hormones. I was diagnosed with breast cancer at Christmas and had a mastectomy and since then the PLC is way out of control. It is so bad that we've had to postpone several operations while my legs healed.

I have learned that it is good to keep acrylic nails because they are thick and rounded and don't break the skin when you scratch. And believe me, everyone scratches. a good thing for children to use are the bath gloves that are usually found with the bath poofs (?) at the department stores. These gloves have a rough texture to them for exfoliating dry skin.

Never take a HOT bath or shower, for that will surely bring them on, as will a sunburn. The worse case I've had of PLC was when I sunburnt one summer. Now I do as my doctor says, no more than 10 minutes of unprotected sun and then lots of sunscreen.

The ointments the doctor prescribed for the itch didn't work, they're too heavy and clog the pores, making the PLC itch worse. Use a light, water-based cream. I use Eucern Original. Many here have had a good track record with whipped cocoa butter, but I still find it too thick for my skin.

I am not a doctor. just someone who has taken 5 years to figure out what to do when I get the break outs. I do find it somewhat amusing that PLC  comes from unknown etiology, meaning the doctors and researchers have no idea as to where it comes from, why it only affects some and not others, why some get it only once for a couple weeks and others get it constantly for tens of years. My amusement comes from the fact that professionals can't determine it's origin, how can we plain laymen do it?

I do know that we will never have a drug specific to PLC because there aren't enough of us who have it and it's not worth any pharmaceutical company's R&D to find a cure for it, orphans that we are.

May you all have a wonderful, itch-free week!

Regards,
Linda (aka elseaeff)

[lindadiane]

Linda: I agree that it is possible it is not hormone related. But several of us see a correlation. Uterus or not, you still have hormones. You will have hormones in your body even as an old woman...they will just be depleted. Many researchers believe it is the loss of hormones that reduces immune function as we age. Nonetheless, you still have hormones. <3

[lfn]

elsaaeff
Sorry if I offended you, but I am in no way trying to scare anyone with self diagnosis. This forum is to share information and try to find solutions in any way possible. I don't claim to diagnose myself, rather do a lot of research on possibilities when it comes to PLC.
Thank you.

[emmamae]

Hi, does anyone out there have any experience with Acylovir? Especially in children? My daughter has been PLEVA free now for exactly one year. But now she has the Chicken pox! Her derm suggested giving her Acyclovir to help shorten the duration of the pox etc in hopes this will not trigger her pleva to come back. ( of course we have no idea if chicken pox would make it come back for sure, but since she thinks pleva is viral there is always that chance). I am wondering what the side effects will be for her etc? She is only 5 and I am freaked out. I am so sick of worrying about this and hate this so much. Thank you!

[BarbMac]

Hi there everyone.
Have not posted for quite a while. Very busy with my music still, but have taken Acyclovir, can't remember how to spell it, and had good results. I took it because I thought I was going to have shingles again. It stopped the shingles themselves from popping out on my forehead and nose again. I had shingles once and nearly lost my eye sight. This time I felt it coming on. I can't tell you if it made me feel better or worse. I stayed in bed for a few days because I felt awful, but the spots did not appear.  don't know if that helps.
I have had the best summer yet for feeling good. I weaned myself off my Gabapentin twice and have decided that I feel better taking it. Only one tablet a day seems to make a difference. I stopped altogether some time in the summer and almost immediately had a huge spot on my leg that was so itchy and sore. Took a tablet and the Itch went within an hour. 
Where I live we have the H1N1 virus all around us, we have been hit hard by it, so am taking extra precautions to stay healthy. Don't want that on top of everything else. Last spring I had a pneumonia shot which made me feel lousy for a few weeks, but hope that because I reacted to it that it has worked and I will be immune to at least that.
Still have no idea why the PLEVA pop up. Had a few on my nose again while I was off the Gabapentin, but they went away when I got back on it again. So all is good. Keep posting. We will eventually get the clue that will fix us all one day LOL Hugs to all Barb

[emmamae]

Thank you BarbMac, here we go

[emmamae]

Does anyone out there with pleva suffer from night sweats? My daughter had pleva a year ago and is now suffering from Night sweats. She has always been a warm sleeper but for the past week she has been drenched. She just suffered a bout of the chicken pox and maybe the viral illness of that is causing her sweats, but I read in children it could also be an auto immune disorder that causes night sweats in kids. Just curious?

[lindadiane]

When is the last time your daughter had routine blood tests done? You should mention the night sweats to her pediatrician. When I perspire I get much more itchy!

[BarbMac]

Morning All.
thought I would post today since I am going to be away for a month over the Christmas season.
In case you guys are new to this posting place I was first diagnosed with PLEVA when I was 27 years old.  I am now 66 and going strong with help  from all sorts of remedies and drugs.
Today I can't talk, seem to have got a cold / flu, but compared with a number of my friends I am doing really well.
I have spots on my face and a few on my chest at the moment. I also seem to have some on my face that came a year ago and have not left. This is new as all the others in whatever form they arrive usually disappear after some time.
I have put myself on Vit D  Omegas and Co onzyme Q10 because I am now on Lipitor for my super high cholestrol count, and I read that I needed the co enzyme  to balance the Lipitor. I am also on low dose of gabapentin still because without I start to fall apart. My body nervous system seems to be out of balance and this seems to keep me stabilized.
I went off it a couple of times this summer because I made a point of being out in the sun despite having had numerous skin cancers in the past. I decided at my age that I would try anything and skin cancer is minor compared with becoming so ill that I couldn't get out of bed for months because I was so ill. I believe that not getting enough sun was the cause of that.
Take all of this as only my opinion, but the last three years have been great. I do get tired, but I am really busy playing a lot of music. Anyway. I am writing this in case there is someone out there desperate to find out how other people are doing over the long haul.  The one thing I do have is a wonderful Doctor who deals with the various mal functions that occur over time.
I forgot to mention that I had a problem with my Optic nerve. I seem to have got over that one except when I get over tired and or stop wearing my 100% sun block glasses. My eyes seem to have become really allergic to too much light. I wear them to watch TV even now. Don't know why this happened, but at least I can still see.
Once winter came I thought I could go back to my ordinary glasses, but the nerve pain started up again, so I go around with large dark shades on.
I get asked by many people if I cant to be incognito, but I tell them I am better off with them on and they say OK.
I do wish you all the best for the season. Barb

[Darryl Ingram]

Hello everyone, ive gone through a bunch of your stories and learned alot. But im here to inform everyone that im a veteran fighting with this disease. And i have useful info that may help everyone here. Here is my story...


                   My Name is Darryl Ingram, Born Nov 21st, 1991 in east Boston. Im mixed, half african american, half italian. I grew up as a single child, living with my broke mother who cared about no one but herself and her boyfriends.. What im about to tell you is very personal, and ive told no one about this, whatsoever.My skin is as dark as any other black persons. At the age of 12 i started developing white dots on my skin in random places... some would stay, and some would fade away. I didnt let it bother me and neither did my mother because she simply didnt care, and i couldnt just walk up to the doctors office at the age of 12 by myself. years passes and it did nothing but get worse. It got so bad to the point where i begged my mother for help.. I didnt grow up rich, so i had the cheapest healthcare available. The dermatologists showed me NO sypathy..all they did was take pictures of these spots, told me good luck and sent me on my way. these white dots were killing me. as early as the age of 14 these spots were all over my body. I got made fun of in school, being called "michael jackson", "spot", "the sicko" and more. You have no idea how bad this took a toll on me. I wanted to die. I didnt want to live anymore, and the only person i had in my life was my mother.. and she didnt care either. Here i am a 14 year old kid with a disease, no family to help, and insecure as hell. It came to the point where i tried putting bleach on myself because i wanted them gone so badly. that didnt go too swell. I can say for one thing, this disease has tore me apart and made my life more a living hell than it is just living with this god foresaken mother of mine. By the age of 16, now living in florida.. still going through this hell, was not an easy task. I wore long clothes to cover them up because of my insecureness. The consequences were i sweated my ass off in this florida weather. Now, from age 14-16 ive tried every steriod cream, lotion, and antibiotic ive seen in this forum and NONE OF THEM WORK!!!!!!!! These spots are on me from head to toe except face and feet areas. Now at 18 years old through research and expierience, i now know how to beat this disease... Anyone who has pityriasis licheonides chronica needs to face the one thing.. THE SUN. My knowlege is clear now. I just recently joined a tanning salon , and im seeing results already within 2 days. Ive fought with this disease for 7 years not knowing how to defeat it, but my research is unbeatable. i dont know if this is just for african americans fighting with this disease, but its working for me. its evening out my skin tone gradually. Go out, Hit the beach and get some UV rays!  IT HELPS!!! if this gets rid of this damn disease it will change my life completely, my insecurities will leave, and ill be the happiest person ever! i will keep you posted on what happens after another 2 weeks at this salon.


 - darryl.

[elseaeff]

Dear Daryl,

Sunshine has been known as a one of the temporary cures for PLC. I belong to a salon for tanning and it and the other things I do keep it under control. I hope when you go to the tanning salon that you are using the stand up booth and not one of the beds. Even when the beds have been 'cleaned,' you end up stewing in some one else's' juices! So stand up in the booth! My derm said to work up to 5 minutes a day in the booth. And just keep it there, 5 minutes a day.

Let me know if you're interested in the other things I do to keep the PLC under control.

regards,
Linda

[Darryl Ingram]

Dear Linda,

 the tanning is working good but slowly... i changed to the stand up booth since i saw your post. the beds are disgusting lol. Also, ive become very itchy for some reason, and i dont know why? Im very interseted in what other things you do to keep it under control. Please let me know asap. thank you.

 regards,

  darryl