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.

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  • Posted

    Hi All, I have only recently (1 year) been suffering from the skin disorder PCL.  I deduced how it started was via a Staph infection.  I already had sensitive skin anyway, and had only 3 years ago had an acute overactive thyroid condition (which is all under control).  However, it would have changed my immune system in some way and perhaps brought a further vunerability to it.   Staph infections also play havoc with your immune system, so getting that I think was the trigger for my PLC.  With lack of Dr's, Specialists and Professor's knowledge on this disorder, I'm not surprised you have all struggled to find the solution over so many years and I truly feel for you, knowing how I feel about it and how I look (it's all over - except my face, neck and tummy).  However, I've been reading up on the net through multiple medical papers on this topic, cause the doctors don't know really how to treat this item or diagnose it properly, so I'm trying to work it out myself instead.  I want to find a natural product, as chemical products always have side effects - some very serious side effects.  So after reading a case study using Bromelain (derived from the core of the Pineapple),  I think Geoff 81636 and KateM is on the right track perhaps as they seem to have had positive results.  Now with any skin disorder from what I have read, it can reoccur.  .  Pineapple is the best natural product apparently to boost your immune system and Berries appear to be the 2nd best.  So I think it is worth a try natural first, and if necessary revert to the tablet format for higher doses.  Will let you know how I go.  If we all try maybe together we can find the cure instead of the doctors.  Thanks everyone for your feedback, really appreciate it.   Jo 

    • Posted

      Hi I just wondered how you've been getting on since you last posted? I'm just waiting on a biopsy but they believe I have the same condition so am desperately trying to find as much information as possible now

      Thank you

  • Posted

    Yes it is a terrible condition, have had a combination of 3 things, solar keritosis, pleva and P vericolor for about 10 years now. many biopsies, scrapes and wacky dermo's who seem to know absolutely nothing about these conditions. My biggest problem is I tend to scratch which makes it worse and heavy persperation in summer, so mine seems to die down in winter as long as I do not overheat. Have had Trisporal, antibiotics and many creams and cortizone, Niz shampoo and Candizole, so much for the Dermo, a homeopath diagnosed me after a simple blood test as to whether it was viral or fungal. Viral was clear so it is fungal, yeast bacteria gone wrong on the skin mantle and now out of whack. We all have yeast and bacteria on our skin and when it gets interrupted these things happen. Like my wrong diagnosis of Scabies and that lotion painted on ruined the bacteria on my whole body. They seem to clear and then flare up again. At this stage I highly doubt it will ever clear up completely, on my face I use cover stick and wear cotton fabrics to cover arms and body. Always looking for a fan, open window or air conditioner to keep cool. A bit of sun now and again helps to dry them out, but more appear and I start all over again. The dermo's I have been to do not seem to care at all, just take your money and thats it, one even kissed me on the cheek to prove I am not contageous, I should have reported him to the medical council, what a sh1t. Keep on keeping on and take one day at a time.

  • Posted

    Hi, I have recently been diagnosed with PLC. I have had this for 8 years almost. I'd like to talk to you if you don't mind. You've had it for so much longer and I can't find one other person in this dang world with it. I hope you respond

  • Posted

    yeah,i was diagnosed of PLC few months ago. But with help of NIZORAL SHAMPOO and some creams. They have been some improvement. I think you should try NIZ SHAMPOO
    • Posted

      Hi Fred, glad to see that you have had some success with the Niz shampoo and creams. I just keep on with the Niz on the worst spots and it is getting better results. I am also about to try the Bromelain capsules as I have found a source for the 500mg here and am interested to see if I get some long term results from them. As soon as I let up with the Niz I find a new outbreak so we will see if Bromelain has any effect. Keep on keeping on smile

  • Posted

    I've been diagnosed with PLC 6 years ago, after a skin biopsy. For 5 years, all doctors i've visited told me they knew nothing about the disease, didn't know what to do nor where it came from. Last year I went to a new dermatologist and, surprisingly, he knew the disease and the recommended treatments! At first, I went do UVB twice a week and it was supposed to last only 3 months. The spots really faded but as soon as I diminished the treatment, they came up again. So I kept with UVB and tried sulfone for 4 months, and all it managed to do was nausea and stomachache. Then, i've tried erythromicin for 2 months, which worked out ok, but did not cleared everything up. After that, tried doxyciclin for 15 days (it was prescripted for 1 month, but it really made me feel sick and I gave up on treatment since no improvement was noticed - in fact, it did seem to only get worse). I've took all these drugs while doing UVB twice a week. 

    It is way better than before, but did not go on remission. Also, I've tried several times topic steroids, but it seemed to solve for a while then the spots came out stronger. 

    I've tried to keep track of food, skin lotions, soaps, routine, everything I do to try to find any connection, but in this 6 years all I could find any relationship is with psychological. Whenever I go to another depression crisis my skin get worse.. 

    I'm now giving another chance for homeopathy, but also thinking about eating a lot of pineapples while taking the medicines - it can cause no harm, right? At least, I'll eat some fruits in daily basis.. 

    • Posted

      It is difficult and no one really seems to know what to do, hope you come right with UVB, I did find it helps a bit but nothing helps permanently. I would advise getting the Bromelein 500mg capsules as eating a lot of pineapple can be hard on the tongue. Eating pineapple is great for a fruit but not as a remedy. Niz shampoo also helps but as soon as I stop it comes back, so at the moment I am doing a blood and stool analysis with the homeopath to see if the problem is the food I eat and how the gut deals with it, as well as what bacteria I have good or bad that needs to be adjusted. Quite honestly I get deperate some days with scratching, itching feeling and the skin flaking off. Taking 5HTP to try and keep me calm as anti- depressants have very negative side effects. My homeopath is also a qualified medical doctor, so he works in both fields and finds better options than just pills and steroid creams. Maybe one day we will find the answer. Keep on keeping on smile
    • Posted

      Hi everyone! I have been a PLC sufferer for 8 months now. I believe mine was triggered from a bacterial infection from a couple of insect bites. I guess I am lucky to have met this dermatologist who correctly diagnosed my symptop with PLC (and was confirmed through a skin biopsy). 

      I have tried

      - oral steroid

      - topical steroid

      - methrotrexate 

      all of which only helped in a short term and I refused to continue through that path because of the side effects and a negative opinion of the conventional medicine.

      Tired from the conventional treatment and scared of the potential strong side effects these medication have, I turned to TCM (traditional Chinese medicine). 

      Although the Chinese doctor did not even know what PLC was, he treated me out of his guts along with more than 50 years of experience. I started drinking the prescribed Chinese herbal drink, which consisted of several kinds of herbs. There were absolutely no side effects other than the unpleasant taste of the drink. By the second week, I started to see results. Red rash started to appear around the lesions. 

      I thought that it looked worse than the initial stage. And so along with TCM, i also went to the conventional doctor who prescribed me with Doxycycline for one month (2 pills/ 2 times a day). I continued with both the herbal drink and Doxycycline. By the third week, i stopped with the herbal drink and continued taking Doxycycline alone. Right then, my skin was full of this red rash.

      So, i luckily found cold pressed extra virgin Sesame oil, to which i applied to my skin daily. The result was MAGICALLY AMAZING! The lesions started to dry out, and then the red rash dried out as well! My skin was turning back to normal. I am only waiting for the scars from the red rash to fade out and  I am back to the old me. 

      NOTE: Diet is also EXTREMELY important. Try to avoid any inflammatory foods, including red meat, marinated foods, refined sugar, sea food (crabs, shrimps)! Trust me, diet played a huge role in my healing process.

      My theory is:

      TCM helps with letting out all the "toxic."

      And sesame oil is JUST AMAZING! I can't wait to tell all of you, PLC sufferer, to try them out!

      The process of healing really takes patience and endurance. I believe you all can do it! Let's kick this annoying disease in the ass!

       

    • Posted

      Hi lex.

      And thanks for the info.

      Where would one get this cold pressed extravigin sesame oil? And how frequently to apply to the skin

      Regards

    • Posted

      I have been doing UVB ray photo therapy for almost 1 year, twice a week. At first 3 months, it got better but after a while, my body started to go against it and created more red dots. I don't feel like it help me anymore. I want to stop phototheraphy but my doctor won't let me. She gave me triamcinolone acetonide steroid cream to put on where PLC got worse. It helped a bit but only helped 15% I still have thousands of red dots and scars over my tummy and back.

      She wants me to try antibiotic but I'm still breastfeeding. I can't do it. I have beenb taking bromerain 500mg for 4 months now and it isn't working for me. Nothing has improved and made it even worse.

      I am just getting depressed and it got worse and I got shingle on top of PLC . Life is

    • Posted

      I live in Thailand. But you should be able to find it in a herbal product corner anywhere you live! I apply it after shower day and night!

      Also, if you have a chance, DO go to the ocean and swim in the sea!!! The drying lesions disappeared!

      smile

    • Posted

      Hi, thank you for posting about what you are going through with PLC. I was just diagnosed but I feel like I have had this for a very long time. I had a staph infection a few years ago and I also battle tinea versicolor. I am trying to figure out what to do to help my body fight this. Can you please share where you got the sesame oil? I would like to try that. thanks very much

  • Posted

    hi do you mind if we can connect via email for further updates? I Also suffer from this disease , it was once 30% gone with a diet but my naturopath doctor died while i was in the healing process , i now have an appointment with a Holistic therapist on the 5th of August. i will like to have a partner in thisĀ 
    • Posted

      My son was recently diagnosed and we are doing aryuvedic medicine (tradicional Indian medicine) but not really working after 3 weeks. When did you start seeing results after the holistic treatment? Thank you!

      Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

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