Shingles – more than “just a rash”

Lorelei Hunt, November 2022

I had just come back from holiday when I felt unwell with what I thought was a virus. A week later, the characteristic rash appeared and my GP was able to quickly diagnose shingles.

Get shingles seen soon

I know now that it is important to contact your doctor surgery as soon as you think that you might have shingles as you can be given anti-viral medication that might help to reduce its impact. People make lots of assumptions about shingles – that only elderly or ill people get it, that mainly women (or mainly men) are affected. But if you have ever had chicken pox – and most people have – the virus lives in your nervous system and without warning, can reappear as shingles.

Pain after the rash

Having shingles is unpleasant. As well as feeling generally unwell, the main symptom is a painful, blistering rash on one side of your body – often on your trunk but possibly on your face and your head.  But many people are left with a painful and debilitating after-effect of shingles called post-herpetic neuralgia (or PHN for short), long after the rash has healed. PHN is a type of nerve pain that continues to affect people for months or even years. I had PHN for months, delaying my return to work and to enjoying normal life. But I know that some people are affected even more severely. So I was pleased to be able to provide a patient’s viewpoint to a Bristol-based research team setting up the ATHENA study.

This will test if PHN can be prevented by giving people a small dose of a drug called amitriptyline as soon as they are diagnosed with shingles.

We are asking people newly diagnosed with shingles to help, by joining the study. Being asked join a clinical trial can seem like a scary or even slightly risky thing to do. However, ATHENA is not using a new drug, but one called amitriptyline, which has been in use for decades. Researchers want to find out if it can prevent PHN; rather than using it to treat existing conditions, which is how it is used at present. There is lots more information on the study website, including explanations of how participants are careful screened and the support provided by trained researchers. And it’s fine to walk away if you decide it’s not for you.

The combined experience of everyone who takes part in the study will tell the researchers whether amitriptyline can be used to prevent PHN following shingles.

This could change how shingles is treated across the UK (and beyond) in the future. Please do think about participating if your GP surgery is part of the trial. This will help us to test once and for all, whether amitriptyline can prevent people from suffering the painful and unpleasant long-term after effects from shingles, and possibly save many people from suffering in this way in the future.

Anyone can get long-term pain from shingles

Lorelei Hunt, 8 September 2022

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.