pityriasis lichenoides chronica PLC sufferer for 21 years

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

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.

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.

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.

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.

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

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.

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!

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.

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.

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 the sun helps.

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...

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.. 

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

Hi Cory.

Thanks for the info.

What dose of methotrexate were you taking and for how long?

Regards

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.

Dont despair no matter how hard it is. You never know what tomorrow holds

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.

Hi! My son was recently diagnosed and I was wondering if you went to the holistic doctor and if it helped? Thank you!!

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, andanti 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!!

Thank you. I didn't give up, as you cheered me. I did a big improvement with changing my diet)))

Thanks SO much! It makes sense.. will take my son to a holistic doctor too

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.

 

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

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.

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

Hi! Wanted to check if you are still doing good e/ diet etc? (Hopefully yes!) thank you!! 

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??

 

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!

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 )

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.

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.

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 pregnancy what didn't kill us made us stronger!

hi which country are you in?

Wonderful! How are things now?    

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. 

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

Hi Cory,

Hope all is well. I know that you posted this 5 years ago but just wanted to know whether your plc stopped and never returned after taking the Methotrexate? I have been suffering with PLC and it has left so much scarring around my body and literally rely on steroids.

make a paste of turmeric with water and apply it on your skin and keep for 15-20 mins before bathing. it worked wonders for me and reduces the scars