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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