pityriasis lichenoides chronica PLC sufferer for 21 years

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Hi, have suffered with PLC for 21 years now! I have it covering my entire body apart from my face thankfully! Was diagnosed at 7 years old after a bout of chickenpox, had every diagnosis under the sun until I was admitted to hospital at age 18! Had been told for years that I had psoriasis but after 8 days on a dermatology ward, countless biopsies, blood tests, photographs and being seen by a group of dermatologists at a seminar it was decided that I had PLC! Have had the light treatment which works wonders but it always returns after a few weeks, have used countless steroid creams, antibiotics including erythmocin and tetrocycline and have also taken aggressive immunosuppresants all of which did nowt!! Summer time is great as it will clear up for a while if I do a spot of sunbathing but I find it a vicous circle as i'm embarrased by it and tend to cover up! Was told that it is viral and on my last appt with a specialist was discharged and told it'll burn itself out at some point and clear up on its own! After 21 years I highly doubt it and have learnt to accept I have this for life. Its frustrating as it is so rare and not much is known about it.

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  • Posted

    Hi, I don't know much about PLC, but was diagnosed with it last year, the spots only pops up in the winter, last for a few months and then its gone, Maybe you can assist me with some explanation, I live in Malawi and there is basically no treatment available here, if you know of any herbal remedy, please let me know. My name is Jaco by the way.
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  • Posted

    Have you ever tried oral bromelain (40 mg 3 times a day for 1 month, 40 mg twice a day for 1 month and 40 mg/day for 1 month)? http://www.ncbi.nlm.nih.gov/pubmed/17671882 Yes, I realize that this is an extremely small study group; yet, due to the possibility of a complete clinical recovery suggested by it with no physical side effects, I hope that it may offer you some help.
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    • Posted

      I will try it.  I've had this for 15 years and have just been living with it.  Been to about 6 dermos, many tests, drugs, etc.  Nothing worked.  Mine is much worse in summer.  Even showers make it really look terrible.  Thank you for this suggestion.  Patricia1020

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    • Posted

      Hi Patricia

      Wondering if you have tried the Bromelain yet?

      I have had PLC for 10 years now and am at my wits end. Just want it to go away, but it just seems to get worse and worse.

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  • Posted

    That isn't very reassuring news for PLC sufferers - 21 years struggling with it.  I know autoimmune diseases are hard to get rid of and I have had PLC for 4 years beginning at the ripe old age of 56.  I hope there's a cure some day, but because only 1 person in 2,000 has this unsightly condition, the doctors aren't going to do much research.  So we'll just have to keep covering our bodies up with makeup I imagine.
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  • Posted

    I've had it for 43 years now and I'm still waiting for it to go.

    I'm finding the older I get the worst the outbreak becomes.

    Don't use any perfume soaps just stick to newborn baby stuff it really helps.

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  • Posted

    Wow Graeme, 43 years of it!  Happily, mine is in remission now and it is contained.  I use light therapy and find that aloe vera helps plus Dermol 500 lotion instead of soap.  I truly hope someday it vanishes from your body.

    I read somewhere that scientists are trying to retrain the white blood cells from attacking the skin so that this unsightly disease can be banished once and for all.

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    • Posted

      Thanks it comes and goes I've had it from the age of 2 after chicken pox

      And was bitten by a spider in Australia.

      Used light therapy was good but work gets in the way can't go the hospitals three times a week.

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  • Posted

    After I read your post and other's responses, I feel hopeless to cure this.

    I have been having this for 6 years and Every year I changed my dermatologists since everyone of them told me it was eczema, which was wrong. It is never itchy or painful. The dots are just there. This August I had 2 biopsy done by 2 different dermatologists. They both said it is not eczema but it is Pityriasis type. One said it is Pityriasis Rosea. However, Finally yesterday my latest doctor analized with pathologists and decided it is pityriasis lichenoides chronica. After reading about the symptoms, things started to make the most sense. 

    I am 35 years old now and preganant. The red dots are expanding more and getting worse.

    I have tried more than 20 types of steroid lotions/creams in the US market, salt bath, all eczema lotions, and vegetarian diets. Nothing really cured it. Only one lotion that helped the most was Clobex but the dots returned every 2 weeks. 

    The doctor is now sending me to do narrow band UVB ray. I hope that will help as others' comments in this post said. 

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    • Posted

      Try Minocycline, a strong antibiotic. My dermatologist has me on 2  a day for a month, and then 1 daily afterwards.  The drawback is staying out in the sun for prolonged periods as the skin gets quite sensitive, and without sunscreen you may develop a rash.

      I had done it all also with light therapy, protopic cream, steroids (gained weight so quit that) - then azathioprine which threw my blood levels into a spin so promptly quit that one.  That particular one seemed to have the most side effects especially deterioration in liver function.

      The narrow band UVB ray may work for you though as I talked with a few people who thought it really helped.

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    • Posted

      Thank you for your recommendation.

      I have the same thing but on my whole back , a lot under my breasts and on the sides of my body. PLC is gradually spreading every 6 months as I noticed. It has been a hell of 6 years of this disease that has never gone for good. My doctor mentioned about very strong antibiotic pills(I think it is Minocycline you mentioned) but I can't take them now until I finish with my pregnancy and breastfeeding. My dermatologist from NYU didn't mention about methotrexate but I will see her again in a month. I will ask her about this medicine.

      Once PLC found new spots, they always show up there more and expand. Mine has never been itchy. They are just white scale dots that turned red, flatten and become brown and gone. They have never gone away by themselves. I now have to use Clobex® (clobetasol propionate 0.05%),which really helped me by far. This medicine got too expensive that I can't afford anymore in the US.

      I am not sure where you live but try this steroid lotion. It really helped me and stopped the spread. The skin will be clear for at least 2 weeks...Then, they come back...

      I have not done UVB ray/phototherapy yet because I am pregnant and I think I will wait until after my pregnancy.

      Wish you luck. If you take that methotrexate, please keep us posted if it helps.

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    • Posted

      Methotrexate treats cancer the side effects are nausea vomiting and may cause loss of hair my doctor said it won't cure it but will keep it under control just wondered whether it would be
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    • Posted

      Worth it, thank you for your information, I live Hobart, Tasmania. Mine have spread that much that I tend to cover every part of my body, they are never itchy but are now becoming sore on the soles of my feet.
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    • Posted

      I'm an American living in England and if you have a chronic disease (mine is underactive thyroid) you receive all your medication for free.

       I know about the high cost of drugs in the USA and think it's criminal they can charge so much.

      My dermatologist did recommend methotrexate initially, but I chickened out after reading all the side effects.

      It seems to be a never ending thing and can drive one crazy after years of it.  Good luck to you also with this mess of a disease!

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    • Posted

      I'm going off minocycline.  I went for an appointment to Specsavers thinking I needed stronger glasses, and the guy said my vision has changed significantly in one year.  He even told me to take a blood test for diabetes.  I did and thankfully didn't have it.

      Then I looked up the side effects for good old minocycline and one of them was permanent vision loss.  So I'm going back to the clueless dermatologist and see if he can put me on another drug that doesn't affect the eyes.

      I am so sick of this disease and also found out that if you have one autoimmune disease, the chances are high you will get another.  In my case I have had underactive thyroid for years, and now have osteoarthritis.  You soon learn to accept this ugly disease and cover up, but it has sure made me bitter about skin treatments with NO cures in sight.

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    • Posted

      I was thinking of trying methotrexate, but the hair loss side affects disturbs me as it's the one good thing I have left.  That cream Saz mentioned sounds good but of course she mentioned the spots come back.  It's a never ending cycle - maybe when I'm 94 the spots will give up on old skin...ha.
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    • Posted

      Yes, medical system and health insurance in USA is cruel unfortunately.

      I did try UVB light therapy at NYU dermatologist department. I am still pregnant and my PLC got worse. The UVB ray treatment is like a tanning salon telephone booth. I only tried 50 seconds for 4 times. It seems to help reduce the red spots. They said it's safe for pregnant women. It's like exposing your skin to sun light. But I got really really nauseated right after and didn't feel so good. Maybe it's because I'm.pregnant. So, I stopped. I will try again in July after my baby is out and I'm done with breastfeeding.

      Just for info for everyone smile the sun helps.

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    • Posted

      Hello and I compleltely understand your struggle, I have been suffering with this terrile disorder for over two years now. I have tried everything myself and nothing worked. Finally went with the Methotrexate? and after one month i have gotten great results. The problem comes from to many white blood cells within your body. The Methotrexate? will kill them off and return your immune system back to normal. The drug is really strong but it's better then looking like hell.... They give you a side affect pill with it and it does help. Also take some V-D As that will help your body fight it...

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    • Posted

      Were you taking any medicine along with the sun light exposure? They got PUVA treatment, which you have to take some drugs together. They really make you feel sick, nauseated.. 
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    • Posted

      Hi Salz.

      Thanks for the info about PLC. how are you doing?. Do you have any update about treatments that worked for you recently.

      Regards

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    • Posted

      Hi Jay,

      Nothing has been working unfortunately. Photo therapy worked for 2-3 months but after I stopped, it all came back worse than ever. I tried 500 mg bromerain pineapple pills for 4 months now. It's not working for me. I ever eat raw turmeric every morning. I stopped eating gluten for months. I even did acupuncture and after one session, I got home my breakout was worse. Now I am back on topical steroid cream Clobex. Very expensive and only cleared up for a week. Then, all are back.

      I tried head and shoulder shampoo. It did nothing.

      I don't know anymore. I'm getting depressed while I'm still breast feeding my baby. Life with PLC is struggling. It has been 8 years. I am feeling hopeless. My last resource is holistic doctor. I'm going to see him next week. I will keep update if it will help.

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    • Posted

      I took methotrexate for about six months and my hair started to fall out. My doctor said that if I continue on this drug I could have major health issues linked back to methotrexate and decided it wasn't worth It. It did help clear my skin a little bit.

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    • Posted

      MY UPDATES : GOOD NEWS to me and hopefully everyone here(not sure if my condition and results of what i did will effect others PLC).

      I went to see a holistic doctor in early May with all PLC over my bac, belly and chest. Narrow ban U VB ray stopped working for me after 1 year of doing 2 light theraphy sessions per week. My PLC got back stronger. The holistic doctor told me something kinda made sense. I'm lack of microbiome, good bacteria. I have to change my diet. He suggested me to do absolutely gluten free, dairy free and only eat organic meat if necessary. No red meat is better. Then, also I need to eat a lot of probiotics, take vitamin D, and anti inflammatory food. I have been eating fresh ginger, tumeric, carrot, etc. Everyday.

      GOOD NEWS is my PLC is 75% GONE!!!!! I didn't have to use any steroid or antibiotics. Oh my god, I can touch my skin again. Everything is coming from the inside. I have been eating heathy for 7weeks. It changed my quality of life. I can't believe but it is happening.

      I hope after 3 months of doing this diet, all my PLC will be all gone.

      I will update more. Let's beat this freaking disease together!!

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    • Posted

      Hi, your comments are reassuring to me. I was wondering if you are still seeing improvement, I was just diagnosed with PLC  but my rash on my back is extremely itchy and I've been reading that PLC has no itch, What is your case? I will definitely consider diet change since I see nothing else works. I'm starting to get sad.

       

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    • Posted

      Don't be sad. I know it is hard. I got depressed too because I have PLC for 9 years now. It got really worst after giving birth to my son last year. Then, I had postpartum depression making my PLC the worst. Stress and diet play a big role. The more stress you get, the worst the spread.

      I have been on this gluten free and dairy free heathy diet for 7 weeks. The improvement on my skin is now so obvious. Not just me, my husband noticed the improvement on my skin too.

      This is what I did.

      - no gluten

      - no dairy

      - lots of green vegetables and fresh fruit

      - eat a lot of probiotic food and eat coconut kefir

      - eat a lot of anti inflammatory food

      - drink a lot of water

      - get under the sun at least 30 mins a day

      - exercise everyday

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    • Posted

      Oh, my PLC is itchy on my back when I ate anything containing wheat. You got to figure what food or things you are allergic to.
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    • Posted

      Thanks for this informtion.  I've had PLC for 15 years now.  I've been to about 5 dermo (even at big teaching hospitals) and nothing topical works.  I tried methotrexate - made me itch and I stopped it.  My skin doesn't itch.  It is just very unattractive and I have to always wear at least 3/4 length sleeves.  It is mainly on my upper arms and lower legs.  Arms much worse. I tried another vitamin A type drug.  It made my stomach sick.  I will try the bromelain and following your suggestions.  Thanks for giving me hope.  Patricia1020

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    • Posted

      Hi!! My name is smitha,.im suffering PLc from past 16 years.im married and planning for kid but im scared that it might inherit. Could you please help me by sharing your experience during pregnancy with this Plc and also will it inherit??

       

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    • Posted

      Hi, yes, I have been doing this diet for 8 months now. My PLC is 90% gone but another10% is from me not being commented 100% to the heathy organic diet. It is very tough because I love sweet and white refined sugar is very bad for my PLC. white sugar trickled my PLC the worst. With my hyperactive non stop toddler, I need sweet to keep me going. Hope you try and it works for you. I haven't used any steroid cream since May. It feels awesome!

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    • Posted

      Hi, I have no idea if PLC will be inherited. However, By far, my 19 months old son seems to be ok. His skin isn't sensitive and shows no symptoms of PLC at all. During my pregnancy, PLC was the worst. It spreaded everywhere on my cheat, breasts, tummy and all over my back. It wasn't itchy until I ate sugar or wheat. I didn't know before that all those food made my skin itchy until lately I tried this heathy organic diet.

      I think hormone, anxiety, depression, frustration and stress during pregnancy made PLC worse too. Now since I have been eating heathy, I feel GREAT and HAPPY. No postpartum depression anymore. PLC is also almost all gone. Not 100% super clear but 90% looking much better. I am taking that with a big smile biggrin)

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    • Posted

      I totally understand what you have been going thru, as I had been thru that period for 10 years. Not being able to show your skin is very depressing, as a woman. I'm still doing my diet and I can't stop. I did ate fast-food again for two days. All red dots were back and it took me another 1 months to clean up my body with organic heathy food to clear those dots. I'm telling you now the heathy diet change is not easy for me. I'm a foodie and I love food. Now I barely can eat anything. I have to cook or eat at those salad organix places. It's not cheap and hard to find. However, if I don't have to have these red dots again, it is worth it.

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    • Posted

      Hi! So i have the same issue. I noticed my first spot when i was 20 years old and it spread rapidly all over my body as high as my neck. I am still dealing with it today and I am now 30 years old. I noticed the steroid creams were not helping but i do the UV light therapy continuously. If I don’t go for a week or two the spots do come back. I can’t wait for this thing to go away completely. It affects my confidence, social life, and also my main concern is having a baby. I’m planning to hopefully have one within the next year or two but I’m so scared my baby will inherit this too. What suggestions or advice do you have that will be good to do before or while your pregnant? I don’t want to do UV light therapy while I’m pregnant since it may affect the baby. I love this forum and will be awesome if we keep each other updated constantly. I also gave up on dermatologists bc all they suggest is more biopsies and more light therapy and nothing seems to change. sad

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    • Posted

      Hi, I did UVB ray light therapy during pregnancy but after two sessions i had to stop because it made me very very nausea. The nurse said it might dehydrate me more and I need ed to drink lots lots of water. However, I stopped because my PLC wasn't responding to UVB . It got even worse after each session.

      My 1.5 yr old son has no skin problems by far....knock knock. His skin is a perfect baby skin, rarely has pimples too. So, I guess PLC isn't inherited. However, who knows, maybe PLC might show up on his skin later on when he is adult. I will keep it posted.

      Only things I will suggest are eating very heathy and go organic during pregnancy. No refined sugar and no antibiotics added meat. Processed food is bad for you. Also keeping the stress level low is important. Stress triggers PLC.

      Good luck for your future pregnancybiggrin what didn't kill us made us stronger!

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    • Posted

      This gives me hope. I need to go further with my anti-inflammatory diet. I had a flare recently when I allowed myself sugar and dairy.  It's very difficult when I travel and don't have control over the cooking.  I have suffered for 1.5 years now and I can't imagine struggling with this for life.  If I could reduce it by 90%, I could have a semblance of a normal life and wardrobe. 

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    • Posted

      I've suffered from this disease since JULY 2016 after moving into an apartment with mould (not sure if they are related) but every doctor i saw in the 2 years following claimed it was eczema. I was confident it wasnt eczema because it looked nothing like the eczema i had in between my elbows and back of my knees as a child, growing up this was a regular occurence for me. I consulted with Scotlands head of the dermatology board when I moved up here and finally got a diagnosis that made sense. This was in JAN 2018, so after a long day of research, I thankfully came across your post. I consulted with my derma and he advised me to go Gf, and dairy free 2 weeks at a time to see if I'll notice any improvement. I Started the Gluten Free diet first and noticed improvements straightaway. By MAY 2018 i'll say I WAS 80-90% clean of spots and discolourations (scars on my dark skin from old spots). I'll say I didnt get completely clean because there were foods I thought were GF, like sausages which werent always. I started eating Gluten again and the spots came back in full force. I'm starting 2019 GF with the hope to completely clean up my skin and scars by the summer. I've tried all the derma creams on the shelf and I'll say only the DERMA 500 lotion actually helped. I'll be using this going forward as a soap substitute and using the CLARINS tonic body treatment oil for my scars. This was recommended to me by a friend who has a thyme allergy and it also works great for correcting stretch marks. The BROMELIAN tablets sound like a healthy supplement to add to the mix as it helps reduce inflammation and I went in on the pastries over christmas so kind of need the extra help with the spots I already have.

      I'll keep you posted on my progress but thanks a lot for sharing your experience, as it was really the only helpful longterm solution that gave me hope. When i found out what disease I had, and started my online research and the title of this post had me balling my eyes out for 2 hours as I scanned through every comment. I'm starting this year with hope, much different from last year and I know that by GOD's grace, this time next year I can come back with an updated goodnews story of clear and radiant skin

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