Diagnosed 17 years later!

I first noticed a problem after a trip to the Amazonian jungle in 1997. I had a few insect bites which didn't seem to heal properly. This became a chronic situation with intense itching and bleeding. My GP referred me to a dermatologist who diagnosed eczema and prescribed the usual creams and emollients. I also had tests for any tropical diseases. Over the years the rash spread and I had many acute phases which required treatment with very potent steroid creams and antibiotics when my skin became infected.

This year things have got really bad. I have had to take 4 courses of antibiotics. I was at the end of my tether as I wasn't sleeping properly, I was embarrassed to go to the gym or wear shorts and tshirts in this beautiful summer we've just enjoyed. Staying in hotels is a nightmare as they invariably have white bed linen and sometimes by sheets can look like a bloodbath.

I pleaded with my GP to see the best dermatologist he knew, even if it meant I had to pay privately. He referred me to an eminent dermatologist who does a session at my local private hospital. This wonderful doctor took one look at me after listening carefully to my history and immediately diagnosed Nodular Prurigo. I feel like a huge weight has been lifted, for a while I thought I was going mad. Why couldn't I manage my eczema? Now I know my condition is NP I have researched it and realise that there are others out there too.

I am embarking on a course of oral steroids and cream. Then there is the option of phototherapy and if necessary immunosuppressants.

I don't lay any blame for misdiagnosis on my GP or the original dermatologist as I believe NP to be quite rare. I'm glad I have discovered this forum.

4 Replies

  • hi M, we assume NP to be rare, when in reality it's misdiagnosed so frequently. I saw five and more doctors, but of the initial five, one is meant to be a top dermatologist. IN my one and only consultation with him, I promptly voiced my doubt over his finding that my condition is acne necrotica. I pointed out to him that acne always has signs of pus, but my skin was dry and even the slough in the lesions appears clear.

  • i tried steroid creams. invariably these only numbed the symptoms forup to 40 minutes, so there is danger of overuse. and overuse of steroids thins the skin. ASIDES, the steroid creams do nothing to facilitate Healing.

    haven't bothered with injections. need more than band aid treatment. see my post on vodka brandy. pity gentian violet is so messy to use.

  • i avoided immunosuppressants because i do not want my immunity lowered and then contract a heap of other diseases. my ESR reading isn't excessive, it's been up slightly, consistently with every annual blood test.

    For one thing, the medical crowd may be slow to catch on that this is a virus akin to shingles. as per an italian psychiatrist.

  • I agree with the avoidance of immunosuppressants. My doctor prescribed azathioprine. You have to be on it for a long time before any improvements occur. And even then, it doesn't 'cure' it. In the meanwhile, it can lead to cancer, liver damage, anaemia, and a low white cell count.