Pityriasis Lichenoides Chronica

[elseaeff]

Well girls, forget the BC and PMS. I had a radical hysterectomy in `96  and the PLC didn't show up for another 3 years.

Overheating, stressing, things like that keep it coming back. If I get sick, the flu or a cold,, It will be preceded by a very nasty case of PLC with fever and pustules and terrible itch. Did you know that the same pepsin you take to treat an upset stomach will also stop the itch?

Just a few 'did you knows' from someone who's had this for 4 years now.

Good luck!
elseaeff

[mellanie76]

i have a question,after  they did the biopsy,they tested it for tcell rearrangement and it came out positive?but isnt that part of the  dx  of  plc? that is why the doc sent  me to the oncologist,im thinking he didnt know anything about  it then.its sooo frustrating!!

[elseaeff]

Hey there!

it was once thought that PLC was an indicator for a rare type of lukemea. It is now known that it isn't so. I won't say it never happens, but it is described as the precurser occassionally to this lukemia.

It also says that it usually affects children around the age of 7 and they outgrow it at puberty. I'm still waiting, at 53, for puberty.

elseaeff

[lindadiane]

The hysterectomy could be a connection because you either had to go n hormones afterwards or suffer an abrupt change in your hormonal balance. I think it's something to do with the levels changing. Pepsin, you take it to stop the itch or use it in a cream or what? It you take it internally this all leads back to the intestines and everyone has mentioned stomach upset at sometime with PLC. Maybe were missing a digestive enzyme or this is some weird parasite.

[emmamae]

Hi all, it says that  if you are a child when you get plc/pleva  you usually outgrow it by puberty which would also indicate a hormonal connection. My daughter got it at  age 4 and only had it for a short time. She does have allergies too, she is severely allergic to peanuts and brazil nuts. I also read somewhere that even vaccines may have connections to autoimmune disorders and I wonder if all the vaccines she received as a child may have something to do with this and her allergies.  Turtledestiny, I would try going off the BC and see what happens, it is worth a shot.
Tcell lymphoma was also brought up to me by my doctor, she said that the initial biopsy would indicate if she had any issues with that which it didn't, but she also said that we had to keep an eye on her for the first couple of months as if this was to come about it would happen very quickly. In 20 yrs she had only 1 patient who did have plva and tcell lymphoma and who knows for sure if the 2 were related.

I think it is very rare.

[mellanie76]

well since ive had this biopsy , it has been about five  months and nothing had really worked,last week though, i had a tonsilitis infection and was given the zpac and  i noticed that some of the red spots were darkened and started to peel off within  3 days of taking this,maybe it is finally killing the infection  that made me breakout the last few streph throats that  i had, they were treated with amoxicillin  and i think it  made  my rash worse.... idk i hope im not imagining things.btw what is the best lotion for this, i have tried everything  except eucerin  and my skin is still dry. i also live  in tampa florida, does anyone  know a good derm that know  how to treat this? cuz i still havent  found one LOL.... thanks

[lindadiane]

Mellanie76:I also took a Zpackl for something and it helped but did not cure the bumps. One bump got infected and my internist put me on kefllex qnd that helped but again, did not cure, the bumps. I hate to say it but it seems those with an olive complexion and more oily skin seem to get over this faster. I also have very dry skin - lubriderm also works well.

[mellanie76]

thanks for the input, well i went  to my gp and she said she will research it more and see if she can maybe put a  treatment together for me :O) ill post and let you guys know!!

[mellanie76]

hi, girls still have the  bumps, i hate it when they dry up peel and  they leave the white marks, i have it on my thighs and its the driest!! is there a better steroid cream then triamcyclone?anyone have to keep getting biopsies done? thanks for all the input!!

[Kate003]

Hi. I think I have made it through all of the posts in this long thread. I see both PLC and PLEVA are discussed here and I can't find a thread specifically on PLEVA so it is all right to post here?

I received the results of my biopsy yesterday and was told it was PLEVA. I am 46 and began having skin lesions on my face about 18 months ago. The lesions are very itchy, oozy, and bleed easily and profusely. The start on my face I thought was perhaps a food reaction, allergy, or acne but nothing over the counter worked. The lesions then spread to my chest, then belly, then down my left arm, then to my left thigh, then down my right arm. The lesions now cover my entire body including my scalp. Neither my general practitioner nor my neurologist (I suffer from chronic migraines for which I am on many medications) took the symptoms seriously. Unable to get a dermatology appointment with fewer then a three month wait, one insanely itchy day when I had a darkly pigmented circle appear on my leg, I went to the emergency room. There Lyme's Disease and impetigo were ruled out by visual exam. I was given an oral steroid pack and a prescription for topical cream for scabies to try if the steroids failed. The steroids did nothing. Then the scabies cream (which burned horribly) did nothing.

Finally I got in to a dermatologist and was immediately biopsied. I was also ordered to an allergist for testing. Yesterday I had the first round of quite painful allergy testing which confirmed what I already suspected - allergy to dust mites, cats, wheat, and pineapple. Oh, I put myself on a wheat free/ dairy free diet two weeks ago. Because of my migraines I have been off of synthetic perfumes/fragrances and artificial sweetners for years. Anyway, yesterday the allergist had the derm's office fax the biopsy results though I had not yet heard from the derm that the results were in. <grrr>  That is when I learned the biopsy found PLEVA which neither I nor the allergist had ever heard of.

I have now done all the research I think can be done on the Internet on PLEVA (which I think you all know turns up very little). Since it is the Friday before a holiday weekend here in the US, getting a doc on the phone has proven impossible. 

I have been on prescription strength topical steroids after the derm visit a week ago. No change. Essentially beating the derm's nurse-practitioner into submission so she'd call in a prescription, I am about to start a tetracycline-family antibiotic course. I could not wait until four more days to hear from the derm.

From what I can discern on the Internet and reading your posts, PLEVA is probably related to an immune system failure and T-cell malformation? There seems to be co-morbidity with some other immune system disorders?

Having been a chronic pain sufferer for most of my life (reproductive system problems largely resolved by hysterectomy five years ago and migraines since I was 8 for which I am heavily medicated), I have been through the allopathic medicine ringer. I am loathe to start the same senseless go-round with this. I have known I have a highly stressed immune system. I have PTSD and sensory processing issues resulting in many years of high levels of adrenaline releasing. I have had problems with lethargy for some years that have been dismissed as a side-effect of my migraine medication (beta-blockers in particular) but now I am concerned that perhaps an auto-immune or other immune system disorder might be involved.

Sorry to burden you all with my medical history. I am trying to come to terms with the prospect of adding a disfiguring skin condition (going out with my face like this ... well) to the daily struggle I have with chronic pain. Let's throw in that I have three children, one of whom has some special needs.

Any thoughts or suggestions? I suspect that the derm will call on Tuesday and suggest UV treatment. But it seems to me that my immune system needs some major help. Many of the links in this thread have gone dead with age (thanks for all of you for staying here so long). I am trying to stick with organic, additive-free foods but I have no cooking skills so for the past two weeks have been mostly living on steamed vegetables and club soda. I know I can't keep that up.

I see people have discussed anti-biotics, anti-virals, and UV treatment, as well as a medication that has some cardiac side-effects (ruling it out for me). Anything else, alternative or not? I haven't read here of any other adult who has as many lesions as I do so I am a bit concerned about that.

Thanks so much for reading.

[J]

Hi Kate003,

I am so sorry to hear about all the distressing things you have been going through.  It sounded very PLEVA-ish, but, unless I am mistaken, my doc always said that PLEVA spares the scalp, and is less pronounced on the face, although lesions can occur there.  When you mentioned your scalp, that surprised me.  Do you have any on your palms/soles?  PLEVA is supposedly meant to stay clear from this area too.  Of course, of all of us, there is variation w/ everyone...and I'm no doc, but after years of dealing w/ PLEVA/PLC, I know a couple of things.  Take care, J

[J]

Kate, I just wanted to clarify from my previous post... I guess I'm saying this is the first time I have heard of people with PLEVA on the scalp.  J

[elseaeff]

Hey all!

For the first time in nearly 5 years (the last 2 years nearly constantly broken out) I have spots between my toes and fingers and in my hair on my scalp about an inch into the hairline. On my face, On my ears. On my eyelids.

I don't know what's going on with it now. I must inject interferon every week for multiple sclerosis and have been fighting what started as breast cancer a year ago. I've taken meds or been "shined on" or "flooded with" chemo, and I have had some horrid break outs.

What's next?

Linda
 

[Kate003]

Thanks J.   My palms and soles are fine - the only clear skin at this point. I should be more clear about the scalp - I think technically it is hairline, just under the hair surrounding my face. Not really my scalp.

[emmamae]

Hi Kate, I am so sorry to hear what you are going through right now. My daughter did have some on her hairline and she did have PLEVA. Hers however did not itch or bleed. They did peel off and leave white pigmentation marks which she still has on her body now and she has not had any new activity in almost a year now. She used zpack and steroid cream. She was only 4 when she got this and it does affect everyone different.  The ones on her hairline where very few and almost unnoticeable accept by myself and her derm, I think the facial ones are not as bad due to the face getting sun exposure the most.

[lindadiane]

Hi Kate: I have had a few at the base of my hairline in the neck area. I also get one or two on occasion on my ear lobe, around my nose, in my eyebrows and on occasion on my face cheek.  I get one on the palm side of my thumb and I do have them on the top of my hands. Sun works best. UV will help. I will take a coolish bath with some vinegar and that will help the itch as well Lubriderm lotion. Nothing gets rid of the itch entirely for me. Also, I have other allergies and take a Zyrtec before bed which also helps with the itch. I am so sorry!

[Kate003]

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).

[lfn]

Hello everyone,
I am going to officially try Bromelain since I am done nursing my baby. At this point any kind of change will work for me. I will keep you all posted.

[mellanie76]

hi everyone, i have had this rash flare up again, when i tan or get more sun, u can see so  much of the hypopigmentation(white spots) all over. does this last a long time? i have an appt with another derm that says he is familiar with it and see if he can treat me. i havent tried anything except steroids and  cream. any suggestions would be  helpful. thanks

[PLC123]

Hi,

I developed PLC in my late 20s and have had it off and on. I am now in my late 30s.  I did not know what it was, and had it biopsied 3 times before getting a firm diagnosis.  I have done lots of independent research, and medical articles suggest a link between PLC and EBV (Epstein-Barr Virus) and Parvo Virsus (also called 5th or Slap Face, which children often catch).  I had Mono (EBV) in college, and Parvo more recently.  When I had PLC bad, it was all over my back, my legs, my arms and my stomach.  At first, the doctors thought I was having a reaction to medication, and then via testing ruled out lupus. 

I have found that the following helps when I see a few spots coming out, and generally stops the outbreak--I get sun on the spot as soon as possible, I eat more Iron-rich protein (Parvo can reduce Iron/blood counts) and blueberries (things with B vitamins), and I AVOID chocolate and caffeine.  I read on the internet a while ago that chocolate and caffeine can irritate PLC, and I have noticed that an outbreak will get considerably worse if I am eating lots of chocolate.  Before I had my diagnosis, I had an outbreak during the winter (almost no sun) and ate lots of chocolate during the outbreak, and had one of my worst outbreaks ever!  So, if you do anything, AVOID chocolate/caffeine during an outbreak!  Also, I have noticed that my PLC generally seems to arise concurrent with a head cold (stuffy nose, etc.).  I hope this is helpful the group!

All the best,

S