pityriasis lichenoides chronica PLC sufferer for 21 years
Posted , 65 users are following.
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.
4 likes, 106 replies
paolaaleman Guest
Posted
Momotaro Guest
Posted
I know we are very frustrated and depressed when we have PLC.
I would like to share that my skin is better from PLC By trying to be under the sun in the morning and I have put cold pressed extra virgin Sesame Oil on my skin and it really helps me. It improves my skin in very short time.
If you never try cold pressed extra virgin Sesame Oil, Maybe you should give it a try. It works for me.
Go search benefit of Cold Pressed Extra Virgin Sesame Oil.
I wish it will helps you all.
usha34090 Guest
Edited
Sandy2017 usha34090
Edited
Please change your doctor! You will not die with PLC! It's a disfiguring ugly condition which can get itchy and widespread but that's about it!
I got it last year in October 2017, now in Dec 2018 it's almost gone... takes a while for some but it will go away!
I changed my diet to anti-inflammatory, organic mostly veggies with probiotics. did some liver detox, I also did a ayurvedic cleanse.
Try a ayurvedic doctor and you will feel better.
Good luck !
Joey00 Guest
Edited
Hello everyone!
I've been suffering with PLEVA (Pityriasis lichenoides et varioliformis acuta) for about 9 years now, diagnosed when I was 10 and I am now 19. I'm not sure what the difference between PLEVA and PLC is, but the pictures are identical, as well as the treatments, and the symptoms. If they aren't the same disease (excuse my ignorance), then they're very close. Doctors don't seem too prioritized on this disease, and most forums are outdated if not archived. I'm glad I found this forum since it feels so lonely having this disease, and it seems to go unnoticed.
I was originally misdiagnosed by the first dermatologist I visited, who thought I had Molluscum Contagiosum. They were unfortunately treated by either being frozen off by a painful process, or putting a specialized cream on each bump that would cause a blister to form. This was supposedly so that the blister could raise the damaged skin up and allow it to heal underneath. Needless to say, none of these worked and now I'm covered in scars.
I've tried light-box (phototherapy), and it has helped but the side effects of being directly exposed to so many light rays also make me hesitant to use this treatment consistently. I've also used a topical steroid to help (triamcinolone), which actually had the OPPOSITE effect of helping me.. without fault, every single location that I placed the triamcinolone caused a PLEVA to appear, and unfortunately for me I used the cream like crazy in hopes that it would make them go away.
The areas I typically see my PLEVA's are on my arms, hands, and thighs. After reading the posts above I'll definitely start trying to cut out sugar from my diet, and not give up hope. As long as my condition doesn't develop into a life-threatening lymphoma, I'll try to remain grateful.
I take comfort in reminding myself that as long as what I have isn't fatal, I'll make it through, scars or not.
elizabeth08242 Joey00
Posted
Hi Joey,
You are not alone. I've been dealing with this disease for a long time now. I first got it when I was 21 and Im now 31. I agree with the fact that the doctors do not prioritize this at all. I have done biopsies, been given steroid pills, creams, and done lightbox and the only thing that seems to control it is the lightbox and Ive been doing this on and off for 10 years now and is the only that seems to control this thing from the outside but till this day I wish I knew what is triggering it from inside my body especially since I want to have kids soon and do not want to pass this down to my kids. I was referred to the Memorial Sloan Kettering Center in NYC a couple years ago because one doctor thought it couldve been Mycosis Fungoides which turns into Cancer but thankfully my blood tests and biopsy came back fine. I went from stressing out everyday to not caring as much since its not a life threatening disease and I have hope this thing will just vanish one day. I have not tried changing my diet drastically but will try that and see what happens. I just want you to know that you are not alone with this and Im glad this forum exists because its hard to talk about this with anyone else since they never been through this. I didnt let this get in the way of my social life but did feel very insecure at what point. Im also going to try some liver detox since they say they same skin problems come from there. Just keep your head up Joe and keep us posted. Ive read online that this usually last 10 years so that will mean we are close to the finish line, lets hope!!
Joey00 elizabeth08242
Posted
Thank you so much for your reply! I'll look into a liver detox because I've heard about others trying it (not sure if it helped them).
I'm completely with you on the "not caring as much" note, because as long as it isn't life threatening there are definitely worse diseases to have contracted. The only thing that hurts me is knowing young children get diagnosed, and will have to struggle during their most self conscious stages of life with PLEVA/PLC.
Based off of your story, it seems like PLC gets misdiagnosed very frequently, only adding to the confusion but I'm so glad your biopsy came back fine.
kylene05879 Joey00
Posted
Thank you for sharing. What did the doctor say about this possibility causing lymphoma? I saw some info about that while I researched. Please share.
Joey00 kylene05879
Posted
So sorry for the lapse in response time.
From my understanding, there are 2 possibilities that can turn PLEVA, a superficial skin condition (with its adverse affects we already know much about) into a life-threatening condition.
It developes into Febrile Ulceronecrotic Mucha-Habermann disease (FUMHD). Mucha-Habermann is another name for PLEVA, but in this case it has the added 'febrile ulceronecrotic'
It develppes into a T-cell lymphoma
Both of these are obviously rare outcomes, but having PLEVA in the first place is 'rare', so to us that isn't too comforting.
So far PLEVA is considered an autoimmune disease, and from what I can remember talking about with my doctor is that it has to do with T-cell's overreacting, or in other words an immune system that is hyperactive. For this reason, it increases the likelihood of T-cell's becoming injured and cloning (aka lymphoma). Less formally: Because we already know that our T-cell's are acting out of sorts to begin with, it's more likely for us to encounter other conditions involving T-cells's as the main causer...
Please take everything above to be conjecture, because a lot of this has to do with memory, and I would back it up with research but the Internet isn't always the most reliable when it comes to this. I'll have to have a more detailed conversation with my doctor about what it is that takes PLEVA to these 2 elavated conditions. However, I might suspect that the answer is 'unknown' because not too much is still known even in 2019. In any case I'll see what I can gather.
On another note, if you're the one whose learned more about this in the time that's passed, please let me know! I don't visit my doctor until next month.
celia_35931 Guest
Posted
Hope you all are doing well...interested in hearing if any of you have had any titanium or some sort of metal put into your body whether it be for tubal ligation, joint replacements, ect. before being diagnosed with PLS? Or maybe were on an antibiotic for longer than normal for treatment of something. Obviously still getting no where with Dr's other than the usual prescription or UV therapy. Tho I will say my obvious skin spots aren't near as bad as they once were it's still scary to think something is still going on. Autoimmune disorders can come from anything really so trying to narrow my search starting from the top. Thank you for your help!
Joey00 celia_35931
Posted
Hey Celia, nope, no metal inserted into my body (unless you count a flu shot, or vaccinations, in which case my PLEVA did not start after this either way). I don't have any allergies, have no history of any other medical conditions either. I honestly have no clue what could be in common even after reading other people's posts about when they first noticed PLC.
The only thing that may not be related on any level (but I'll add just in case), is that I suspect a very small form of lactose intolerance. I still drink and eat dairy products, but am now cutting back on processed sugars and dairy products (might even cut out gluten for now).
Do you have anything that you believe could have caused your specific condition?
lauren34014 Guest
Edited
Hi everyone
I have had PLC for close to 10 years now and it just seems to get worse and worse.
Wondered if any one else had tried going Gluten free and seen good results?
I've read up about Collagen powder and thought i may try that too.
Anyone tried JS Health Vitamins? I see there is one for skin and digestion and wondered if it was worth a shot?
My derm has recommended UV light therapy - but i am hesitant as I've read it can come back worse after? PLus it is costly and takes up a lot of time going three times a week.
saz83588 lauren34014
Edited
hi there,
i have been having PLC for 10 years by far. i have used many steroids and done UVB ray treatment (3 times a week for 1.5 years). steroids helped temporary. the dots always came back after 3 weeks and worse. UVB ray helped very little. the dots came back more! I tried bromelain and it didn't help my skin at all.
i posted earlier here a few years ago. the best thing i did was stop eating gluten, white sugar and dairy. i went all organic.
IT CHANGED MY LIFE. ALL DOTS ARE GONE. NO MEDICINE. NO MORE DOCTOR. believe me, we are what we eat. basically, our body needs good bacteria to fight bad bacteria and keep our guts healthy to digest all bad processed food.
if you google microbiome food list, try it for 1-2 months strictly. you will see results.
i started to eat gluten again last month because of stress. dots started to come back! now that is the proof for me that i know what treated my PLC. everyone's body is different. you might be allergic to something else in your diet or your body can't digest it. however, cutting gluten be and dairy is the main thing. try it and hope this helps everyone else as much as it helped me 😃
good luck!
Lakshmi123 saz83588
Posted
I have been affected with PLC.. having few queries.
how can I connect with you..do you have any insta or fb I'd.
jenni2019 Guest
Posted
Hi everyone! I have had PLC for about 3 years now, but I never knew what it was. I went to a few dermatologist and they thought I had eczema or psoriasis. I finally decided to get a biopsy this past April and they said I have plc. Its always on the back of my mind but I pretend it doesnt exist, until recently i notice it is spreading more. The strange thing is that my plc does not look like most pics on google. Mine starts off with a small red dot, spreads which causes discoloration, and then more red dots appear. Is that normal!?? Part of me wants to take another biopsy from another derm but idk if it would be pointless. The disease has really been getting to me lately. I feel sad, depressed, and scared of what my skin is going to look like in the next coming years. After reading some of the comments I am trying Bromelain and going gluten/dairy free. I am reallyyy hoping this helps!
rukma39626 jenni2019
Posted
hello. thinking of starting bromelain as well. but there are not enough studies to see if it helps to convince me. but i would like to wish you the best! and please let us know.
souad95687 jenni2019
Posted
Hi
please dont feel sad, we all need to be strong in order to over come this. There has been a lot of positive information flowing through, which is a great and can only try them, every little helps..
Mine started in Jan 2021, after i got covid my autoimmune system went on over drive causing me severe spots on my legs, arms, fingers, hands and my feet with severe itching.
After a biopsy i have been diagnosed with psoriasis and was on many steroid cream/ tablets nothing worked. I was convinced it was not psoriasis which i had another biopsy same result. Doctors were baffled as it looks like psoriasis but not behaving like psoriasis, so i was their ginuea pig, all doctors came to see and then came to the conclusion that i have PLC, so i have been given Doxycycline 100mg capsules to take for 2 months then after light therapy.
What bothers me more, is the severe itchiness. I found sulphur soap helps with the itchiness and the spots as it drys them out and also coconut oil soothes.
Will update all how i get on with the antibotics later.