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Pityriasis Lichenoides - new diagnosis waiting for a biopshy

Posted , 6 users are following.

vanessa26896
vanessa26896

Hi All

I've been struggling with a horrific rash/allergy that has been misdiagnosed as foliculitis. None of the treatments i tried touched the itching and I've got horrible scars (changed pigmentation) all over my back and arms. After changing from my normal GP as I've been trying for a referral to a dermatologist for at least 6 months the locus in the practice referred me. Within 10 minutes the derm has diagnosed me with Pityriasis Lichenoides and I'm now waiting for a biopsy to confirm. Can anyone tell me how long it took after biopsy and whether once you have been diagnosed the dermatologist will 'keep you in the system' so that if you have flare ups you can go back? I'm on antiobiotics currently and heading to Florida on holiday and he tells me sun therapy is a good thing. Any tips for dealing with it gratefully received.

0 likes, 10 replies

10 Replies

  • natasha58075
    natasha58075 vanessa26896

    Posted

    Hi I have also recently been diagnosed with this. I have suffered for the last 2 years and was always told by my GP its eczema! instantly the dermatologist knew what it was. Unfortuntly they also said there isnt much they can do as treatments dont always work. It may go or may not and it can always come back. Mine affects the whole of my body except my face and is constantly there. I hate it! im only 20 and always stay fully covered up and wouldnt dare show my skin to anyone who doesnt know about it. I dont have any tips but its nice to talk to someone who also suffers with the same condition as no one I know really understands it and my partner thinks it will clear away with some cream :'( x

    • vanessa26896
      vanessa26896 natasha58075

      Posted

      HI Natasha

      thanks for replying, it's been hard getting the gp to take notice. Constantly saying they could treat it but nothing working. I'm glad I know what it is, it's at its height on my back and upper arms although I do get bouts on my chest too. They can be really painful too! Do you see a consultant regularly or now they've diagnosed it have they just left you to it? thanks Vanessa

    • natasha58075
      natasha58075 vanessa26896

      Posted

      It started on my arms then spread to my stomach and then onto my legs. Its just starting on my back now rolleyes I have to go have the biopsy first to confirm then I will get set up with a treatment plan...so far ive been told to not come in contact with soap, I have a steroid cream and a moisturiser which I have to apply 4 times a day and I also have to sleep in cotton gloves as my skin on my hands has started to peel, crack and bleed. I really hope I find a treatment what works. It started almost instantly after the birth of my son/getting on the contraceptive implant so im considering having it removed and see if that helps. x

    • joan4354
      joan4354 natasha58075

      Posted

      The treatment with Doxycyclene, antibiotic with anti-inflammatory effect.  Take for full month.  Have under control.  My Derm put me on the liquid steroid, spray and gave me a site to purchase that was affordable, really expensive.  Need script from Derm.  Really clears but can only use for short times.  I have not been back I have had Other problems from Rheumatoid and heart.  Just came home from ICU, a first, passed out in bathroom broke three ribs, and concussions. My heart.  Have strong bones, very lucky.  I have loving husband, family and friends, very blessed.  All caring for me.  Five children, five grandchildren and one grandchild.  Being happy makes a big difference.  My nurses were so loving and caring.  The skin condition before diagnosed and controlled was very stressful.  Please share.
    • joan4354
      joan4354

      Posted

      Forgot to say how sorry this happened after having your baby. Such a very special time.
  • louiselost
    louiselost vanessa26896

    Posted

    I have had PLC for the last 5 years and it really has been totally frustrating.  Been on all the medications, creams, sunlight treatment.  The damn things go away and you have hope and then they kept recurring.  Antibiotics don't seem to work for me at all.

    The white blood cells attack the skin and continue to do so.  Why some scientist can't figure out how to redirect these cells is beyond me.

  • joan4354
    joan4354 vanessa26896

    Posted

    It took three biopsies.  The third was PLC, very rare at my age 77, just turned 78.   I understand frustration, first was winter skin.  Left that derm and went to one who deals with skin conditions  that come from immune conditions, highly recommended.  I have Rheumatoid diagnosed when 52.  My Rheumatoid has been wild since Oct 8th,2012, been on steroids a lot with other treatments. Now  somewhat under control has spread to inflamation in lung and bronchial tubes, treatment working.  My rash occurred after treatment for secondary virus condition.  Broke out with itchy, painful red spots on lower arms and tingling itchy head-scalp.  Rash changed spots with clear covering and began to colonize and individual ones.  Does scar with rough top and dark areas.  The treatment with Doxycyclene for a month started clearing second breakout.  All over my body even worse than first.  Now have litchen like places, crusty and light brown and pimples on face and lightly on arms and upper chest and back, not bad.  Use steroid cream.  Triamcinolone 0.1 percent.  I have a stronger liquid but use only on body not often.  I have been blessed with clear skin all my life, another learning curve.  Extra dry skin need moisturizer all the time.  I have not been in contact with anyone.  I may go on a bit.  Please keep in touch.  
  • j91524
    j91524 vanessa26896

    Posted

    Hey, I to have Pityriasis lichenoides and I'm only 23. At first my dermatologist thought I had tineas versicolor but after the skin biopsy came back that's when she realized I was being mistreated. So she put me on methotrexate which I have been taking for over a year now and it doesn't seem to be doing much better. The redness have gone away but I majority of both of my forearms are still faded to the point where it looks white and I'm African American so you could imagine how that looks. I hope whatever you're using works!

    • myles_and_kyle
      myles_and_kyle j91524

      Posted

      Hey! I was first diagnosed with PLC when I was 23... i'm turning 33 this June. I was on methotrexate for a short time when my hair started to fall out. My doctor had also warned me that there are major health issues that I could develop down the road that would be linked to methotrexate. If it's not working wonders for you I would definitely get off of it.

      I've noticed over the last couple years my PLC has gotten more severe and it lasts longer. I used to only have bad flareups during the winter time and then my skin would clear up completely in the summer if I laid out in the sun consistently. Not the case anymore -Sun exposure doesn't seem to help.

      Has anyone had any sucess going gluten free? Or trying the paleo diet?

      I've made an appointment with my dermatologist to ask him about maybe getting on a medication for psoriasis? Has anyone tried that route and had any luck?

      Best,

      Ab

  • natasha58075
    natasha58075 vanessa26896

    Posted

    Ive had it since I was 18. My skin has been very clear for the past around 5 months now though I noticed if im stressed it flares back up. I havent had any treatments though I found that dettol baths have been working wonders on my skin. Its a horrible condition purely because its rare so people dont know much about it so often see it as though its contagious
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