My Prurigo Nodularis Story

I was diagnosed with the above disease last year. It has a prevalence of around 3/10,000. The aetiology is unknown.

Scratchy symptoms

It causes unbearably itchy papules which dominate life preventing normal activity including sleep. There is no effective treatment. Fortunately for me, I have learned to control the itch-scratch-itch cycle for the moment. All my lesions have so far been accessible to scratch - ie not on my back. At the moment, I am in remission and hope that I don’t have another flare-up.

Itching to be taken seriously

Although it is a skin disease, it is not trivial. Some patients kill themselves because the itching is so severe. I can understand that this can be the only way out. If my episodes lasted longer and were more widespread on my body, I think I would be having those thoughts.

Whilst there has been endless research into pain and its management, itch has not had the same attention paid to it. For some reason, I can manage even severe pain - eg comminuted fractured humerus which was managed by bed rest. No decent analgesics; just paracetamol and no support, not even a sling. However, managing the itching of prurigo was impossible. I could not carry on with any normal activity at all eg gardening, cooking, reading, socializing and most debilitating of all sleep.

A pain point

It is time that itching becomes a major subject for research. Pain may be indicative of impending death, itching is not usually indicative in the same way. However, itching can be severely debilitating and life-ruining and needs more attention and money to research effective management/treatment.
I hope that someone with an interest and influence will read these comments and start the ball rolling.

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