1. Community
  2. Skin and nails
  3. Dermatology

Does anyone with PLC or PLEVA have any autoimmune conditions?

Posted , 7 users are following.

GirlXinterupted
GirlXinterupted

Can anyone who is willing to share their information please post here which (if any) other health conditions that you have along with Pityriasis Lichenoides? Even if they don't seem relevant to you, they may still be relevant!

For instance, myself, I have severe "seasonal" allergies, at the point of taking Zyrtex ALL YEAR ROUND now. 

I am going to see an allergist next week for the first time in my life (30 years) to have an allergy test performed to find out the specific culprit(s).

I have a few suspicions but nothing confirmed.

I was also "diagnosed" recently with Fibromyalgia for my consistent all-over body aches and pains (which I am contesting and seeking a second opinion for, because I believe symptoms of fibro at times can falsly present when truly relative to another condition)

Lastly, I have pre-hypertension. Nothing to be alarmed by just yet but my doctor has been keeping an eye on my blood pressure. But I'm overweight also so that is significant. 

My point of this post is that I am curious if there are any other relationships between this skin condition and other topical or internal conditions, among us PLC/PLEVA sufferers.

 

0 likes, 18 replies

18 Replies

  • joan4354
    joan4354 GirlXinterupted

    Posted

    Hi, my name is Joan.  I was diagnosed with biopsy October, 2015.  I have Rheumatoid Arthritis.  First break out was preceded by virus in February 2015.  Head tingling, itching;  arms broke out with red spots, itched and hurt?  First dematologist blew it off as winter skin, did not make cense to me.  Went to dermatologist who treated immunemiatiated skin problems. Stopped my Orenzia, in case allergic reaction.  Rheumatoid flared up had two steroid shots to control till started   I have break out of a lichen like on face(peal bleeds) and breakout on scalp last four months.  So glad to have found this site.
    • GirlXinterupted
      GirlXinterupted joan4354

      Posted

      Thank you for your reply. Interesting that you have RA along with this condition. My dermatologist immediately ran some bloodwork for a few things and recommended I see a Rheumatologist. The Rheum immediately tested me for RA because of other symptoms. The blood tests he ran came back negetive.  

      My blood tests from the derm came back with Epstien Barr Virus antibodies (I had the virus about 20 years ago) and the derm also found a large amount of Strep at the time (which was strange, because I did not feel sick at this point in time) 

      The common link that I am seeing is that the "flare ups" happen when my body is fighting ANYTHING ELSE at all. Even a common cold. 

      My symptons of PLC/PLEVA immediately followed a bad virus/cold as well when they first began. Also I had them on my arms the same way, itchy and painful, but this was a few months before the strange patches I started getting.. I just thought it was my laundry detergent at the time. 

      I just started having a really bad flare up over this past week. Mine come in the form of papule-type little spots (they almost look like pimples, but can show up randomly on my body)  and then I also get small circle patches that look similar to nummular eczema or ringworm.  I havent had the circular patches in a while, they are just kind of mis-shapen now.  

      This is just such a strange condition. I cannot wait to see the allergy/immunology doctor on Thursday. Can't wait to hear what(if any) input he may have about this. I will DEFINITELY post a topic on here about whatever my take-away is from that visit. 

      I've been through hell and back for a year now, and I refuse to accept that because this condition is idiopathic, that is not tied to something else. 

      Its *strictly my non-medical theory* that PLC/PLEVA is a sympton and not a condition, and I believe that once we find the cause, we can work toward treating the ailment, and not just quelling the symptoms.

       

    • joan4354
      joan4354 GirlXinterupted

      Posted

      As mine progressed became a red spot with clear covering.  Spread all over my body; chest, breast, shoulders, arms over under, stomach, bottom, back, thighs, legs, hands and feet.  When I had a steroid shot in each but tucks to treat Rheumatoid systems cleared for a while and came back in about month or so with vengence.  Treated with steroid cream and then stronger steroid cream and went on Doxycyclene (it has anti inflammatory action)  for a month.  Rash cleared slowly.  Reappears in small pappule and lichen ? Like face does not itch. My first scared with rough cover and dark spots. Must admit you feel like something from outer space at times. I have checked into research no findings of cause.  Is much better not so bothersome.  Just on face, scalp,arms, chest. Not at all like first stages.  Do not think you will find a connection.  Sorry, I know the feeling.
    • louiselost
      louiselost GirlXinterupted

      Posted

      Hi, I've been off this site for a few months.  I've had PLC for 6 years now and it is totally frustrating.  I have to cover up when I visit my family in North Carolina and resent that enormously.  

      Talk about trying everything:  light treatment 52 times didn't help, various medications, etc.  My dermatologist has me on Dapsone now, and I get a blood test every month.  There's something called MAD - multiple autoimmune disorders - and I have two of them - this skin disease and under-active thyroid.  I also have osteoarthritis which started after this ugly skin condition.  

       Because only 1 out of 2,000 people have PLC, not much research has been studied unfortunately.  The white blood cells have to be re-directed somehow to stop attacking the skin and that has been futile.  I have finally learned to live with it.  It IS a condition and dermatologists seem to be at a loss about any cure except pills that suppress the immune system.

  • joan4354
    joan4354 GirlXinterupted

    Posted

    Forgot to give age, 78 - told very rare at this age.
    • GirlXinterupted
      GirlXinterupted joan4354

      Posted

      I was 29 nearing 30 when this began for me. This is very rare in general. Guess we're just special

    • joan4354
      joan4354 GirlXinterupted

      Posted

      I know at your young age this is really hard.  I am really sorry you have this.
    • GirlXinterupted
      GirlXinterupted joan4354

      Posted

      Thank you. I cope. I am sorry that you have this as well. I hope you have clear days ahead!

      The aesthetic aspect of the condition pales in comparrison to concerns I have about what other ailments lurk beneath the surface.  I worry about sepsis, as I suffer from many symptoms of the more rare form of Mucha-Habermanns.

      I need to get back to my primary doc and get some more referalls soon. One appt at a time. Holding out hope for the allergy doc's pronosis, or any relative information I can get out of it. 

    • joan4354
      joan4354 GirlXinterupted

      Posted

      I have worried about Pleva the stage that attaches many organs.  Have found if you have symptoms you will be referred, if not change your primary care giver.  I worry because so rare some may not be familiar with problems, I do understand what you are saying.  Rheumatoid has same ability.  I had places on my lungs about 4 months ago my cardialogist got me  immediately  to Pulmeologist.  Ran a lot of test and diagnosed and treated. Inflamation in lungs and small tubes. Probably caused by Rheumatoid. Treatment is working. So hope you get answers, really know how you feel.  My Rheumatoid has been a real challenge past four years, have been doing better.  I am on Orencia and Mycophenalate.  I am happy, have loving husband and family. 
    • GirlXinterupted
      GirlXinterupted joan4354

      Posted

      Although I'm sorry that you also have to deal with pityriasis lichenoides, it is comforting to know that someone out there can relate.

      I'm glad your RA management is working for you! Wish you the best of health to come smile

    • joan4354
      joan4354 GirlXinterupted

      Posted

      Me too, sorry I am rambling.  Trying to explain I know what you are feeling.
    • joan4354
      joan4354

      Posted

      Reread 1st message, mine clustered all over my body and some were single.  My third biopsy was taken on thigh and was fresh break out.  Came back PLC, like you age rare.  I have dry, dry, dry skin. 
  • Lani1425
    Lani1425 GirlXinterupted

    Posted

    My 13 year old son has recently been diagnosed with PLEVA. At first they thought he had chickenpox. He's been vaccinated. But after a biopsy we were told it was PLEVA.

    He was born at 33.5 weeks. Diagnosed with asthma at 3 months. He has aortic stenosis...valve in heart gets stuck (basically) but causes no problems currently. He's had surgeries...inguinal hernia at age 1.5. Tonsillectomy at age 11 because of chronic strep. Pneumonia 6x in life time. Bad enough to be hospitalized. Flu at 6mo. He has a mild case of anxiety over certain things in life. At age 1 he had horribly pain full eczema for a short period of time...but it was only one his back. ??

    I'd love to figure this out. He is a teenager and has hundreds of burn like looking marks all over his body (face excluded).

  • GirlXinterupted
    GirlXinterupted

    Posted

    Hi all,

    I wanted to post an update since I have not been on here in a while. My "spots" have since miraculously disappeared. I had high levels of strep in my blood that they found. Once treated the spots did not go away immediately, but eventually. Some food for thought- in November during a routine exam, my doctor found a 9cm uterine fibroid. I don't know if there is a connection or if it's just pure coincidence. But I haven't seen a single spot crop up since having it removed via myomectomy. Although they did stop appearing before the fibroid was removed. I really believe that strep caused my immune system/skin to go haywire. Please ask your doctors to check out strep levels if they have not. Also there was evidence of a previous Epstein Barr virus infection. I guess I caught mono as a kid? And also always ask for a Lyme disease blood test as well, as that can cause similar skin rashes and can be present loooong after contracting. I am going to ask for a test just to rule it out. But so far I am 6+ months spot free. It was a plague on my body, out of the blue, for over a year. I've never felt more relieved. So I'm living proof that this CAN go away. Finding the cause is key. It's unclear to me which thing was causing the spots, but I can say half confidently that they are gone for good. & It was definite pityriasis lichenoides, as I had a biopsy performed. There's hope!!

    • louiselost
      louiselost GirlXinterupted

      Posted

      Just came across this now.  I've had pityriasis chronica for 6 years, and have tried everything under the sun - or my dermatologist has unavailingly with many medications, light therapy, etc.

       So after reading your post, I will definitely see if I have high levels of strep in the blood and many thanks for that tip. 

      in my blood. The doctor never mentioned that option

    • louiselost
      louiselost

      Posted

      Couldn't edit the first part of last sentence.

    • GirlXinterupted
      GirlXinterupted louiselost

      Posted

      I wish you the best! I hope the information is helpful! Please keep us updated if you find anything. Take care

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.