Author Topic: Pityriasis Lichenoides Chronica  (Read 576840 times)

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Offline emmamae

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Re: Pityriasis Lichenoides Chronica
« Reply #620 on: Sunday March 29, 2009, 02:33:30 PM »
Hi Lindadiane, my daughter did not have a tummy ache before her spots appeared. She did have a cold about 3 weeks before the 2 red spots showed up on her back that did look like bug bites. She was also complaining how itchy she was the night we saw the bumps, but was not itchy at all after that. She had tons of spots but they just didnt seem to bother her at all, thank God!

Offline Ze

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Re: Pityriasis Lichenoides Chronica
« Reply #621 on: Wednesday April 01, 2009, 04:23:57 PM »
I'm 19

I was diagnosed via biopsy with PLC one week ago, though it’s plagued me for 2 years or so. It may started when I moved to Boston fall 2007 (cold and dry).  It could have been the fact I was going on and off birth-control. It could have been the staph infection or the poison ivy I experienced this summer. I was misdiagnosed with scabies multiple times. I was so sick of going to doctors and having them waste my time. Honestly… they should have done a biopsy right off the bat.

I’m in college; it’s a social burden. I know sunlight will help my lesions but I don’t want anyone to see it. I’ve found that tea tree oil helps heal everything up temporarily. At this point, I’m waiting for my light treatment in 2 weeks; I’m quitting smoking because I heard it doesn’t help… especially because PLC is linked in some cases to an immune deficiency. I’m looking into immune support supplements. Has anyone had any luck with this?

The steroid creams don’t help… just moisturize.


One of the things really gets me about this whole PLC speil is the fact that I’m in the process of becoming what I’ve always wanted to be, a tattoo artist… I’m so afraid that this will take away one of my true passions. Is there anyone with PLC out there that has tattoos? Any long-term effects on them?





Offline pokeypup

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Re: Pityriasis Lichenoides Chronica
« Reply #622 on: Wednesday April 01, 2009, 11:17:23 PM »
Hi Ze and everyone. I can totally empathize...I was diagnosed at 27 and absolutely hate this curse they call PLC.  I don't have tattoos but I too have a love for tattoos.  I've never heard of anyone getting tattoos AFTER they've been diagnosed with PLC, but I've read somewhere from one person with exsisting tatttoos that the PLC skips the inked areas. 

Have you been taking anything for your PLC?  I use to take methotrexate but started phototherapy in January.  I get them on my hands and I absolutely hate it.  I work as a nurse and I feel so stupid caring for people when it looks like I have something contagious on my hands.  Words can't express how much I HATE PLC.  It feels like it's taken over my life and I've been so depressed and I'm comtemplating starting antidepressents or something. :(

Anyone reading this....Is there EVER and end to it????  Is there light at the end of the tunnel?????  I hate to sound so pessimistic but I feel like I've got nothing left.  I just need some hope.

Offline lindadiane

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Re: Pityriasis Lichenoides Chronica
« Reply #623 on: Wednesday April 01, 2009, 11:58:01 PM »
Hi Girls...I know this must be very hard to deal with as a young women. It's hard to deal with as an old woman (LOL) of 52. I've had this now for about 6 years. The summer is worst. But I do have to tell you that my husband has been great about it. It does not gross him out or turn him off and there have been several women who got married after the diagnosis. So, you will not be alone. I have tried everything except the methotextrate....I'm just too nervous to go that far. I am a teacher and get them on my hands too, sometimes near my nose and I think oh my gosh the kids must be staring....but I will casually mention that i have ecxzema or psorasis and they blow it off like no big deal. They have never brought it up, I usually do. I ordered the bromelain and will let you know if it works.  I get my hopes up and then they are dashed. My worst time is summer....everyone in shorts and tees - everyone but me and I still have good arms...not all flabby so it's a shame they have to be hidden away. You have to work around it....get those fake tattoo sleeves or wear funky long sleeve silky blouses...can't help with the tattoos - I have none. Try to rest....I will tell you stressing over them does not help at all and just makes you unhappy.

Offline scrabler

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Re: Pityriasis Lichenoides Chronica
« Reply #624 on: Tuesday April 07, 2009, 09:14:23 AM »
 hi to all .
i havnt been on here for a while now ,because i have other problems going on in my health .testing, surgerys and so on .i have been off the methotrexate for 10 wks now ,due to surgery ,and already the pleva is reappearing on my scalp and neck .i was wondering if any of you tried  Tramacet (the gp gave it to me for pain ,mostly for my neck )i was on it for 3 days and boy did i itch like crazy .that is not one of the side effects .i was thinking it was bringing the pleva out again . ???
take care gloria
looking forward to a reply soon
the scrabler

Offline elseaeff

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Re: Pityriasis Lichenoides Chronica
« Reply #625 on: Wednesday April 08, 2009, 02:53:09 AM »
Hi Gloria!

I haven't heard from you for awhile and now I know why. I, too, have recently have had some surgeries and have had to take pain killers (Oxycontin) and they make me break out like crazy, itching like never before. To counteract the itching, they give me a strong antihistamine or pepsid to counteract the itch. The antihistamine works fine, the pepsid works for my upset stomach that the clonazapam gives me.

To add insult to injury or vice versa, I broke my foot yesterday when I lost all motor skills in my left leg from the knee down. I happen to have several air casts (from breaking my feet from the MS) and put one on. Then I went out onto the porch to get the dog bowls to feed them and my foot rocked on the porch boards and I literally heard a "crack" and I couldn't even stand on my foot in the aircast! So, this morning I spent in the emergency room and got a splint on under the air cast and tomorrow to the orthopedic guy. Sigh.

So, more itching from the pain pills again, but I will use the lavender. I don't care if it grows breasts - after a mastectomy what can it hurt? LOL!

Let me know about the bromalaine, I was talking to a pharmacist for my MS medicine and he looked it up because it was used once as a test treatment for MS. He said the only problem he saw with it was getting it pharmaceutical grade. That's the only grade that can be trusted since it's a supplement and they're not regulated by the FDA. Your local pharmacist can tell you where to get pharmaceutical grade.

Hope you feel better and all this hasn't intereferred with your scrabble games!

Yours,
Linda

Offline Ze

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Re: Pityriasis Lichenoides Chronica
« Reply #626 on: Sunday April 12, 2009, 07:47:30 AM »
I started taking immune supplements such as Lysine, Cod Liver Oil, echinacea. Well see if that helps. I'm also going on bromelain asap. I start photo-therapy in 5 days and I've been trying to get some sun. Anyone else found anything to help cover up the rash?

I've been dating this guy for a few months but I'm so afraid he's going to think I'm hideous with all of these dots all over me. I just want my skin back. :'(   

Offline lindadiane

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Re: Pityriasis Lichenoides Chronica
« Reply #627 on: Thursday April 30, 2009, 04:31:31 AM »
I've been taking the Bromelain for nearly a month....no dramatic stop but gradual changes. Less itch for the most part and the suckers are popping and clearing very fast. I'll keep you posted.

Offline J

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Re: Pityriasis Lichenoides Chronica
« Reply #628 on: Thursday April 30, 2009, 02:09:10 PM »
Lidiane,

Do you think the gradual changes are a result of bromelaine, or perhaps you are getting a little more sun because spring/summer is here?  I am very interested in bromelaine for down the road for my daughter, when she gets a little older, assuming she still has this aggravating condition.  Please do continue to keep us posted.  I guess one would have to stay on it a good 2-3 months to see any results.  I am hopeful for bromelaine for you but don't want to get my hopes up too much.  Good luck!  J

Offline DixieDiva

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Re: Pityriasis Lichenoides Chronica
« Reply #629 on: Thursday May 07, 2009, 09:07:45 PM »
Hi all

I'm new to this group. Not sure yet what I have, PRP, Grover's Disease, or PLC. Had my first appt with a dermatologist last week, he took 2 skin biopsies and I go back next week to get the results and see what my treatment options are.

This whole thing started in mid-March when my regular doctor froze off 2 small itchy bumps, declaring they were "age related skin changes." Some 72 hours later I noticed I had a whole new crop of tiny red itchy bumps. Went to a doc in a box on 3/29 who said I had scabies. Treated for that twice with no change except more itchy bumps, so I headed back to my regular doctor who said I didn't have scabies, but he didn't know what I had. Prescribed Eurax lotion to be used twice while he spent the weekend figuring out what I had. 4 days later he told me I had PRP (pityriasis rubra pilaris). He put me on a 15-day decreasing dose of prednisone, which did wonders till I came off it last Friday. More new bumps, more itching, I'm all but counting the hours till I see the dermatologist again.

I'm encouraged by some of the stories I see here. The derm did mention getting a little bit of sun on the rash, and seeing how many of you have gotten relief from tanning beds is encouraging. In the mean time, I'm undergoing acupuncture treatments for the itch, and taking Vitamin E, Evening Primrose Oil, Omega 3/6/9, and Curcumin w/bioperine 3x a day with meals and pushing the water. I've been using a tea-tree oil lotion I found at WebVitamins. Ice packs have helped calm the itch too. I miss my adult beverages, but the derm said to stay away from those for now.  :'(

I'm staring at 50 in a few months, and wonder if hormonal changes have anything to do with this.
A sense of humor can help you tolerate the unpleasant, cope with the unexpected, overlook the unattractive and smile through the unbearable.

Offline alphaqforever247

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Re: Pityriasis Lichenoides Chronica
« Reply #630 on: Friday May 08, 2009, 09:35:58 AM »
hi all have not posted here for a few years i think.  i first got diagosed with pleva in 2005.  When i first had it i had it real bad.  My derm prescribed me erythromyocin, topical steriod and she told me to lay in the sun for 20 mins every day.  i also told my derm that i have been on line and did some research and told her that people are getting good results taking acyclovir she said she never heard of that being a treatment for pleva but she perscribed me it any ways.  2 Weeks have passed by i go back for my follow up and she couldnt believe how much i cleared up in just two weeks.  she went one to say that the antibioics combined with the sun expore cleared me really good and never mentioned anything about the acyclovir lol.  So 4 years have passed and i still get breaks out here and there but recently i broke out pretty bad i can tell when imma break out cause i get real itchy.  I have erythromycin and take it when ever i have breakouts but i have been taking it for many years i think my body is immune to it now.  Is there any new type of treatments out there?  havnt gone to my derm for years since i havnt had any real bad breakouts.  should i try acyclovir again?  or a different type of antibiotic?  What treatment has worked best for all of you?

Offline lfn

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Re: Pityriasis Lichenoides Chronica
« Reply #631 on: Friday May 08, 2009, 01:59:00 PM »
I am so glad I found this forum. I think I got PLC when I was in the Philippines back in 2000. Because when I got back that was when this all started. I went to several dermatologists like everyone else and they didn't know what it was. I finally had a biopsy diagnosed correctly as PLC only after being prescribed a bag of creams that didn't work. I took erthromycin, tetracycline which didn't work. I also went to UVB which made my skin turn hot and itchy -didn't see results, spent lots of time and insurance money going to the UVB in the doctor's office. I did see results when in the sun swimming but it wouldn't completely clear up. I went to San Diego last fall and was in the sun for awhile playing with the kids, did notice the it cleared up to a point where it was noticeable.
I am just frustrated with the look of the skin not being able to wear shorts and short sleeves when it's so hot.
I have been reading about bromelain which I may try ...can someone tell me where to buy the 40 mg pills ? also I am going to try the tanning route. Lately my skin has been itchy for some reason ...When I had my second and third child the condition cleared up, but only a little bit.   Like everyone else, this PLC has gotten my down because there hasn't been a way to get rid it !!!

Offline lindadiane

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Re: Pityriasis Lichenoides Chronica
« Reply #632 on: Friday May 08, 2009, 11:00:14 PM »
IFN you sound like me. Do you live on the west coast? I am on the Bromelain, one month now. I am noticing stuff - the plevas are popoing like crazy and I do not seem to be getting new one. I seemed to have had lingering ones that never popped...just turned ino these bumps/ Well those are now leaving the expected scars. I ordered my Bromelain on line from Akins because it was the only place that carried 40mg...I could not find the 40 anywhere in LA. If you don't mind me asking, hw old are you? Also, to all the new people, welcome. Do not be discouraged...while I am not one who cleared there are many who clear within a year. Hang in there. = )

Offline lfn

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Re: Pityriasis Lichenoides Chronica
« Reply #633 on: Saturday May 09, 2009, 01:01:31 AM »
I live in the Southwest. Do you think the Bromelain is making a difference compared to other medication/treatments you have had in the past? I tried to find 40 mg too and can't find it in any stores, thanks for the Akins tip. I had the PLC since I was 30 yrs and now 38 yrs. Thanks for the words of support. I am all for any kind of natural treatments to this PLC. Also, in an earlier posting someone mentioned there were pictures of the before and after of people on the Bromelain trial does anyone know of that link where I can see them?

Offline lindadiane

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Re: Pityriasis Lichenoides Chronica
« Reply #634 on: Saturday May 09, 2009, 04:36:27 PM »
I could not find the pics either. You came down with yours around the same time I did. I think I am going on year 7. There are definite changes in my skin. I don't want to be skeptical but they are not gone. I am so anxious for something to work I did not want to get my hopes up. I read somewhere that it takes as many months for this to go away as years you have had it so for me it would be 6-7 months. Either way the Bromelain tastes good, like a candy almost, and cannot harm you. I checked with my internist before I started ~ wanted to make sure it was safe and he OKd it...so it won't hurt you. It's actually AKINS and I got the tip from someone else in here. I will say that I have not gotten any news ones. My skin is just so bad and they itch sometimes to the point that I scratch the tops off. From the healing so far I can see I will have white scars and some purply scars and they are small. But I have heard they eventually go away. I would just LOVE to wear a sleeveless or short sleeve shirt again and some capris or shorts. I have clusters on my ankles so I always wear long pants, My arms do see to be getting better but not yet ready for short sleeves. I live in Los Angeles and it's been 98 degrees..UGH!!

Offline lfn

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Re: Pityriasis Lichenoides Chronica
« Reply #635 on: Saturday May 09, 2009, 07:14:03 PM »
If you aren't getting any new ones that's encouraging. Also it does make a world of difference not taking a hot shower, my skin always felt like it was on fire when I took hot ones in the past. Out of habit, a bad one is I also scale the tops off because they come off easily. I have a lot on my inner thighs and they are bright red sometimes. I think I am going to order the Bromelain and try it. I hate going to the derm doctors, they seem not to have any answers, which isn't their fault I guess. It's always a story to tell people what skin disease you have and there is NO cure for it.

Offline lindadiane

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Re: Pityriasis Lichenoides Chronica
« Reply #636 on: Sunday May 10, 2009, 06:09:40 AM »
You are much braver than I am...I just try to stay covered up since most people gawk. It makes for a very uncomfortable summer. Can someone post the Bromelain pics here....please?

Offline DixieDiva

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Re: Pityriasis Lichenoides Chronica
« Reply #637 on: Monday May 11, 2009, 02:02:01 PM »
How much bromelain are you taking per day? I'm willing to try most anything at least once. I also found the 40 mg size at Vitamin Shoppe.

Is there anything wrong with popping these things when they come up? I admit to doing that myself, seems to make them go away, but then I'm still getting new outbreaks.

Has anyone tried Lac-Hydrin lotion?

Many thanks! I'm glad to know there are others who are as miserable as I am.
« Last Edit: Monday May 11, 2009, 02:13:31 PM by DixieDiva »
A sense of humor can help you tolerate the unpleasant, cope with the unexpected, overlook the unattractive and smile through the unbearable.

Offline lindadiane

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Re: Pityriasis Lichenoides Chronica
« Reply #638 on: Tuesday May 12, 2009, 01:13:24 AM »
DixieDiva: Thanks for admitting you pop them because to me it seems when I do they dry up and stop itching. I've even scrapped the surface off or picked the dried up tops off (which I am sure does not help the look of my skin) but gives me relief. I have not tried a lot of different creams because some sting like crazy. What does the one you use do? Moisturize or relieve the itch? Where in the south are you? Do any of you have really dry flakey skin?  Sometimes it seems like I have body dandruff but I think part of that is my skin turning over so frequently. I can cream and vitamin e oil my skin three times a day and it's still dry.  It also seems to me that people who are more olive complexted and those with oily skin seem to get over this much faster, Oddly, for as much sun and tanning booth as I have gotten over the last few years I do not burn at all like I would when I was younger.

Offline DixieDiva

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Re: Pityriasis Lichenoides Chronica
« Reply #639 on: Tuesday May 12, 2009, 02:48:22 PM »
A friend of mine said she had used Lac-Hydrin lotion when she had outbreaks of Grover's Disease. (I was actually stunned to find out someone I know has had this, considering it's rarity.) She said the lotion burned like h*ll going on, but it cleared up the rash quickly. For right now, I'm using a Tea Tree Oil lotion I found at webvitamins.com, it moisturizes and relieves the itch, and I actually like the smell of it. I've been using ice packs when the itch gets really bad.

I started taking bromelain yesterday after tracking down the references to it in this thread. I see the derm today for biopsy results and to get my stitches out, and plan to ask him about the bromelain. I'd like to try that before resorting to the harsher drugs that are available. I'm also using a tanning booth 5 minutes a day, and acupuncture 2 - 3 times a week.

I'd always had dry skin as a kid and through my 20s. When I turned 30, my skin decided to go into puberty and the oil glands turned on and I found myself with adult acne. Who knew you could put 'adult' and 'acne' together in the same sentence? My brother got the olive skin, I got the fair complexion. I'm in north Alabama where the weather has been most uncooperative if you're looking for the sunny south. I'd rather have some scars than this nasty rash.
A sense of humor can help you tolerate the unpleasant, cope with the unexpected, overlook the unattractive and smile through the unbearable.