Discussions By Condition: Medical Errors

Misdiagnosed with PLEVA

Posted In: Medical Errors 6 Replies
  • Posted By: Glenduh
  • June 20, 2008
  • 09:25 PM

Hi All,

Just wanted to put my story out there in the hopes that it can help just one person avoid the nightmare I have endured for the past year...

It all started with what looked like "hives" on my legs. My General Physician thought it was some type of Dermatitis or Eczema. He prescribed antibiotics and a cream that should have cleared it up within 10 days. When it kept getting worse and spread all over my body (except my face), he recommended that I see a Dermatologist. The first Dermatologist diagnosed me with PLEVA. Two other Dermatologists concurred with his findings. It was awful to know that I had this rare disease and with no known cause, cure and very limited treatment options. So I began a treatment of every antibiotic under the sun, Prednisone, steroid creams and Methotrexate.

Nothing cleared up the red blisters (that turned into huge sores). The itching was the worst! It itched so bad, I was bruising myself from the scratching and could not sleep at all because I was so miserable. I was in such misery and just wanted relief. My visits to my Dermatologist became routine in the "sorry, there's not much more we can do for you".

This stupid disease had turned my life upside down. I couldn't sleep, the itching was unbearable, the bad side effects from all of the meds and having to "hide" the hideous sores under clothing. This was extremely difficult in the middle of summer and when I had the sores on my hands. Thank goodness, I did not have the sores on my face!

I had done the Internet research when I was first diagnosed with PLEVA and was so distraught there weren't any specialists in my area. After a year of this, I had enough. I took Methotrexate for one month, but it made me lose 1/2 of my hair -- which continued 6 mos. after I had stopped it. Thank you to my Dermatologist for his flippant/careless attitude regarding my hair loss! It made me say enough. I got back on the Internet and found that there was a clinic that had just opened at UCSF in San Francisco with a Specialist that dealt with PLEVA!

Finally, someone listened. It was not PLEVA. Turns out itching is not a symptom of PLEVA. I had been misdiagnosed for a year! It was Nummular Dermatitis. Along the same lines of PLEVA in that they don't really know what causes it and there's no cure. The doctor said if I followed his treatment, he could make me 75% better in a few months. I was estatic. They prescribed something for the itching (which actually worked and helped me sleep at night). They took me off all of the antibiotics and steroid creams I was using. They prescribed a new treatment. A compound "cream" and a sauna suit. The suit allowed the cream to penetrate deep into my skin. It worked wonders. I could see a difference within a few days. The lesions were drying up and there were not any new ones appearing. I was able to sleep through the night.

Upon my follow-up visit a month later, they were very pleased with my progress. I still have to be very careful with my skin, moisturize every day and act aggressively if my skin does "flare". I'm not back to where I was before all of this happened, but at least there is a treatment that works for me and I am hopeful.

It took the 5th doctor to correctly diagnose my condition -- although my GP was correct in the assumption that it was some kind of dermatitis.

Lastly, don't give up. Keep looking until you find a doctor that listens and isn't just going through the motions.

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6 Replies:

  • Hello there! I was recently diagnosed with PLEVA and went through the same frustrations you mentioned in your post. I was taking minocycline for a while and it seemed to help some, but has recently flared up AND spreaded to my face. It's horrible! The itching, the oozing and worst of all the scarring it causes. I'm beginning to doubt my dermatologist...Just curious, how did your symptoms start and how are you doing now? Thank you for your post, it really does give me a sense of hope.
    Anonymous 42789 Replies
    • February 12, 2010
    • 01:14 AM
    • 0
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  • Hello there! I was recently diagnosed with PLEVA and went through the same frustrations you mentioned in your post. I was taking minocycline for a while and it seemed to help some, but has recently flared up AND spreaded to my face. It's horrible! The itching, the oozing and worst of all the scarring it causes. I'm beginning to doubt my dermatologist...Just curious, how did your symptoms start and how are you doing now? Thank you for your post, it really does give me a sense of hope.Hi, My 4 yearold daughter was diagnosed with PLEVA. She started having symptoms right around the same time we got our pet cockatiel which has been about 4 months. she started with one small bump underneath her eye. took her to the doctor 5 times and they finally did a biopsy on her. and it came back PLEVA. However, as of today i am completely convinced taht she does not have PLEVA. I now have a feeling it has to do with our cockatiel. My poor little girl has been though a ton but my main concern is how the doctors are treating it. I honestly think that this disease is misdiagnosised half the time. dropping the bird off with a friend and hopefully she will clear up!!
    Anonymous 42789 Replies Flag this Response
  • Hi, what was the name of your specialist? I'm in SF and would love to look them up.
    Anonymous 1 Replies
    • September 19, 2015
    • 03:27 AM
    • 0
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  • They never did a biopsy ? I was diagnosed with scabies Intially post biopsy its pleva however I itch all the time and it's moved up to my neck and face. Do you think a biopsy can be incorrect ? Recently I have a burning sensation in some areas of the rash otherwise no other symptoms
    Anonymous 1 Replies Flag this Response
  • I have been going thru these exact symptoms going on 3 yrs now. Was diagnosed with scabies originally and took 6 months of permetherine & ivermecton. it was a horrible experience. After about a year of specialist telling me it was a mental issue, the condition persisted exactly like everyone's in these stories. January 2016 diagnosed with PLEVA give topical steroids and minocycline indefinitely. It seemed to help at first but now it's actually getting worse. I start with an itch on my arm then it just snowballs into rashes. I haven't slept regularly in 3 yrs, I have embarrassing sores and scaring. I'm a single mom, with kids 10 & 11. This condition is miserable and debilitating it has overtaken my life. I've gained 65 pds in last 3 yrs and have social anxiety. I don't know where to turn.
    Anonymous 1 Replies Flag this Response
  • Did you initially have a biopsy? Would you mind sharing the doctors name? Sorry for some reason I can't see other replies
    Anonymous 1 Replies
    • September 20, 2016
    • 03:21 AM
    • 0
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