By Lorelei Hunt, Patient and Public Involvement Representative on the ATHENA Shingles Study, Centre for Academic Primary Care, University of Bristol
Five years ago, when I felt unwell with a pain on one side of my body, I assumed I had a virus. Only after a week, when a rash appeared in the same place, did I think that I might have shingles. I was in good health and never thought shingles was something that I was at risk of. But I now know that anyone can get it.
After getting chicken pox, the virus lurks in your nervous system and can reappear as shingles without warning at any time and the risk of this increases with age. The painful, blistering rash was bad enough, but I didn’t know that shingles can have a nasty after-effect, causing a type of nerve pain called post-herpetic neuralgia (PHN for short).
This can affect shingles sufferers for months after the rash has cleared up and I was one of the unlucky ones who got it. Six months after first getting shingles, I was still suffering its after-effects. It really impacted my life – I couldn’t relax or concentrate properly. It felt like drops of boiling water splashing on me, or little pins sticking in my side. There was not much relief and it often seemed worse at night, interrupting my sleep. It was only gradually the sensation lessened and my life started to return to normal. So, when a friend told me about a group in Bristol looking at patient experiences of shingles, I went along to find out more.
I became the patient representative on a research study called ATHENA. ATHENA will test if using a low dose of a familiar and inexpensive drug called amitriptyline can help prevent PHN in people who get shingles. It seemed to work in a previous, small-scale study, but the NHS needs to test it properly to be sure that it works before offering it to everyone. Although not everyone who gets shingles develops PHN, for those who do, it is a painful and limiting condition. I was relatively fortunate. Some people are much more badly affected and for longer. If we can find a means to stop this happening, it must be a good thing.
We have one chance to do this trial – the funding will not be available again! There is lots more information on the ATHENA website explaining the process in more detail. So, if you are diagnosed with shingles and your GP surgery is part of the trial, please do consider joining the trial – we need 100s of you! With your help as volunteers, doctors will be able to know for sure, whether giving patients a low dose of amitriptyline as soon as they get shingles makes them less likely to get PHN. It might save them from the pain and disruption of PHN and possibly PHN will become a thing of the past.