Shingles Support Society

We give information on shingles and post-herpetic neuralgia (PHN for short), what they are and how to treat them. Please click through to see
Shingles – Questions and Answers
Post herpetic neuralgia (PHN) – Questions and Answers
Information on the vaccine to prevent shingles (Zostavax)
Notes for patients from Dr Mike Serpell – as a PDF file
Guidelines for doctors from Dr Mike Serpell – as a PDF file 
Help the Shingles Support Society to continue to help people
Links to pain organisations
About the new shingles vaccine, Zostavax
NEWS: Get involved in research/see European pain event
Answer questions about how you manage pain

These shingles pages were reviewed on 11th October 2016.

Send a donation (at least £2.50 please) for the full 19 page information pack: Shingles Support Society, 41 North Road, London N7 9DP or phone the office between 10 am and 8 pm with a credit or debit card. You can order this pack on-line.

This printed pack includes the treatment guidelines  for post herpetic neuralgia (PHN) by pain expert Dr Mike Serpell which are summarised on this web page, two pages of self-help advice from other sufferers, a contact list of names/addresses of other people who’d like to share experiences of shingles, and information on TENS (transcutaneous electric nerve stimulation) machines, and more…

People who are blind or partially sighted can receive this information on a cassette: send a donation (at least £2.50 please) or phone 020 7607 9661 to order this with a credit or debit card.

A new vaccine programme is being rolled out for people in their 70s.  Read more below.

Shingles

1 – What is shingles?
Shingles (herpes varicella-zoster) is a reappearance of chickenpox. This is often many years after the original chickenpox infection.

2 – What does shingles look like?

Shingles is a blistery skin rash. Most often, shingles appears on one side of the trunk or torso, front and back, in the area served by one main nerve (known as a dermatome). Occasionally it occurs elsewhere on the body or on the face.

Red patches are usually the first sign of the rash appearing, and possibly:

  • Itching, tingling or burning under the skin.
  • Pain often occurs around the area of nerve distribution, usually on one side of the trunk or torso, sometimes elsewhere on the body.
  • Some people may feel very tired or may develop a slight temperature.
  • Fluid filled blisters appear. These then burst, weep and turn into sores. They may not come up all at once, but can form and slowly heal over a period of 2 to 5 weeks. The skin then crusts over and heals, leaving a little sensitivity or ‘nerve ache’ which soon disappears. This signals the end of the shingles for many people.

3 – Who can get shingles? 
Anyone who has had chickenpox can develop shingles.  Most people have chickenpox in childhood: it is one of the common childhood illnesses and is usually trivial. (Chickenpox in adults can be more serious; the symptoms may be more pronounced.)

Shingles can happen at any age, but is more likely to occur in older people

People who have not had chickenpox cannot get shingles. (Some people with shingles claim that they have never had chickenpox. This means that their original case of chickenpox was mild and not diagnosed at the time – or they have simply forgotten because it was such a long time ago.)

4 – Is shingles common?

By the age of 85, around 60% of us will have had shingles at least once.  About 224,000 people in the UK get shingles every year.  About 60,000 people of these are affected by post herpetic neuralgia (PHN) – that’s just over a quarter.

5 – How do people get shingles?
After a chickenpox infection, the virus retreats to a ‘junction box’ in the nerves beside the spine. It remains there in a dormant state for the rest of your life. Something ‘triggers’ the virus to reactivate (perhaps when you are run down or unwell, but no one really knows why) and it reappears as shingles.

There is a new vaccine to prevent shingles.

6 – Is shingles infectious (catching)?

People do not catch shingles – it happens to people who have previously been infected with chickenpox.

Shingles is infectious for people who have not had chickenpox – but they have to touch the rash to catch the virus.  They will then develop chickenpox.  People who have had chickenpox already are not at risk.

When people who have had chickenpox encounter people with the disease again, it increases their immunity and means they are less likely to develop shingles.

WORK or SCHOOL:  A person can only catch chickenpox by touching the shingles sores, so when shingles is covered by clothing/bandage, there is no risk of infection to others.

7 – Can shingles be treated?
A doctor may prescribe Zovirax (aciclovir), Valtrex or Famvir tablets. If treatment is started within 72 hours, this usually reduces the severity of the episode.  It is important to visit the doctor as soon as you become aware of the first symptoms of shingles so that treatment can be started immediately.

Even without treatment, shingles will heal.  It is not possible to tell how ill a person is going to be, or for how long they will feel unwell.

8 – What can I do to help myself to recover?
Keep the sores clean, but do not use scented soaps or bath oils and do not rub too hard as this will delay healing.

Some people find it soothing to apply wrapped ice cubes to the skin. They should be well wrapped in a flannel or tea-towel and placed in a plastic bag (to avoid dripping). A pack of frozen peas wrapped in a towel is an alternative.

You can also try a soothing lotion (such as calamine).

Wear loose fitting, comfortable clothes preferably in a natural fibre such as cotton.

People who are ill often lose their appetite but it is important to eat nutritious food to keep your strength up and help your body to recover.  Soups and protein drinks may be easier to consume if solid food does not appeal.

9 – Can you get shingles in the eye?
Rarely, shingles can occur inside the eye. This must be treated with antiviral medication, as if untreated the eye may be damaged.

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POST HERPETIC NEURALGIA (PHN)

1 – What is PHN like?
PHN can be felt as “itching”, “irritation,” “burning,” “tingling,” “supersensitivity,” “numbness” or “soreness” but to simplify our text we will always call it “pain”.

2 – When does PHN happen?
It may begin as the acute symptoms of shingles subside and can last a few weeks, months or occasionally years. It can even appear several weeks or even months after the shingles has gone.

3 – Why does PHN happen?
PHN happens when the chickenpox virus damages a nerve during the shingles outbreak. The function of the damaged nerve becomes abnormal. This is shown by the loss of ordinary sensation, but changes also seem to occur in the spinal cord or central nervous system. The possibility of developing PHN after shingles increases as people get older.

4 – Is PHN common?
About 60,000 people of the people who get shingles each year are then affected by post herpetic neuralgia (PHN). This is about one in four of the total number of people who get shingles.

5 – How can PHN be treated?
Ordinary painkillers have little effect on PHN so if you find that the pain is intense, you may want to ask your doctor for a prescription for a stronger painkiller while you are waiting for the treatments shown below to take effect.

One recent trial found that controlled-release morphine 91 mg or methadone 15 mg “effectively relieved pain” and did not cause fuzziness, (unlike the tricyclic antidepressants mentioned in 5.1 below).

Other treatments that your doctor could prescribe are listed below: these all take some time (3 or 4 weeks) for the full effect to be noticed, so do not give up too soon. Axsain chilli pepper cream and Versatis plasters (also on prescription) are alternatives for people with an intolerance to some tablets. See ‘Introduction to medical treatments’ by Dr Serpell, in the full pack for more details about these.

5.1 – Amitriptyline (or nortriptyline) is often used to treat PHN.  It works by building a pain block. Such drugs were first sold as antidepressants, but pain relief is now their main use. You may notice drowsiness and/or a sensation of ‘dry mouth.’ Start at a very low dose of 10 mg and gradually increase weekly to a therapeutic dose of 30 mg or 75 mg.

‘Dry mouth’ can be alleviated by sips of water or fruit juice, or by sucking a sweet or mint. (NB you can buy sugar-free or diabetic sweets if you are controlling your weight.) These side effects will wear off when you’re used to the treatment. As Mrs S. reported: “… it did ease the dreadful pain. I had one or two side effects when taking the pills but I could cope with them – to ease the pain was the main thing and amitriptyline did that.”

5.2 – Anti-epileptic drugs: Gabapentin has been shown to be an effective way to block PHN. Start with a low dose, and increase to about 400 mg three times a day. It does not interfere with other medication and has few side effects even with dosage as high as 800 mg three times a day.

Pregabalin is in the same class of drug as gabapentin and is also effective in relieving pain and improving sleep for people with PHN.  75 mg taken every 12 hours is a reasonable starting dose for the average adult.  It may be increased up to 300mg twice a day if you need it.

5.3 – Axsain cream (made from chilli peppers or ‘capsaicin’) may help as a pain block treatment.  It is rubbed in, near the place where the nerves are itching/painful, that is, in the same dermatome region. If the pain is near your eye or under your hair, you can rub the cream on your cheek well away from your eyelid, or on your forehead. Use a small (pea sized) amount 3 or 4 times a day for about 3 weeks. It stops the pain for seven out of ten people.

Since Axsain cream can ‘burn,’ some people rub in an anaesthetic (numbing) cream about 15 minutes before applying Axsain.  This is ‘lidocaine BP’ which can be bought without prescription as a 2% gel or a 5% ointment. If your chemist doesn’t have it in stock, it can be ordered and costs around £10.00. Lidocaine 10% spray can be bought under the brand name Xylocaine for around £10. Your doctor can prescribe it.

5.4 – Versatis plasters are large ‘patches’ which can be prescribed for PHN.  These are made with a special gel allowing the active ingredient, lidocaine, to seep into the skin. They are worn for 12 hours (day or night as preferred) on or near the painful area.  The skin is uncovered the other 12 hours so that it can breathe. Versatis plasters are particularly useful for people who don’t want to take too many tablets.

6 – What about strong painkillers?

If your PHN is particularly intense, and if the treatments above are not helping enough, then stronger painkillers may be prescribed by your doctor for a short time.

6.1 Tramadol

Tramadol is a weak opioid and one study has suggested it can help PHN but only alongside the other therapies shown.

6.2 Strong opioids

There is evidence that use of strong opioids in PHN is beneficial in relieving pain and is well tolerated.  One study has suggested strong opioids produced comparable pain relief and improvement in sleep compared to drugs such as amitriptyline but there is an increased risk of side-effects.

7 – What can I do to help myself?
The Shingles Support Society’s 19 page information pack includes 2 pages of “Readers’ Tips” – suggestions from others who are living with PHN. There are alternative ways of dealing with pain. Some of these have not been proved scientifically, so we cannot endorse them, but there are studies showing that many people find them helpful. For instance, if your pain is eased when you press your hand against it, then a firm bandage pressed on the area might be helpful.

Send a donation (at least £2.50 please) for the full 19 page information pack: Shingles Support Society, 41 North Road, London N7 9DP or phone the office 10 am to 8 pm with a credit or debit card.

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8 – Could a TENS machine help?
TENS machines transmit very low voltage electrical impulses to a small area.  This is felt as a buzzing sensation and it can prevent the nerves from sending pain messages to the brain. Many people find this helpful.  You may be able to try this at a Pain Clinic.  You can buy a TENS.  Some suppliers allow you to send it back if it does not help for a refund, minus postage costs.  Check with the supplier first.

9 – Should I have an operation to sever the nerve?

This is occasionally suggested but is not guaranteed to help.  In many cases, cutting the affected nerve does not cure the pain of PHN. In a similar way, amputees, who have many severed nerves, may still ‘feel’ pain that seems to come from a limb that is no longer there.

10 – Can I contact others with the same problem?
The Shingles Support Society’s 19 page information pack includes a list of patients like you with PHN who would like to hear from other people. Often communicating with someone else who knows what it feels like can be helpful and reassuring. Please let us know if you would like to be added to the list. Send a small donation to the Shingles Support Society, 41 North Road, London N7 9DP or phone the office 10 am to 8 pm with a credit or debit card.

11 – Could I be referred to a Pain Clinic?
Your doctor could refer you to a pain clinic: either NHS or private. If you send your postcode to British Pain Society, Churchill House, 35 Red Lion Square, London WC1R – or info@britishpainsociety.org – it can send you details of your nearest NHS clinic and a copy of the booklet  ‘Understanding & Managing Long-term Pain’.

12 – Are there other organisations that can help? Links are:
Pain Support has a forum where you can post items to ‘talk’ to other pain sufferers.
Pain Concern is a self-help charity with a lot of helpful articles and radio programme audio files.
The British Holistic Medical Association has a free audio file by James Hawkins that you can listen to called ‘Coping with Persistent Pain’.

13 – Vaccine to prevent shingles
Since September 2013 there has been a shingles vaccination programme for older people. It is being introduced in phases. The shingles vaccine (Zostavax®) is available for those who are 70, 71, 72, 78 or 79 years old on the 1st September, 2015.
The NHS has issued a new press release about this vaccine, encouraging more people of the above ages to take advantage of it.  Ask your GP about if is you have not been offered it.
Private clinics and hospitals can vaccinate people over 60 years old, but you should expect to pay around £150 (or more).
In London’s UCL Clinical Research Centre, Dr Neil Patel will give this vaccine free to anyone over 70 years old.  However to get this, you will need to take part in his research project – it involves 5 visits to his clinic. Email: neil.patel@ucl.ac.uk or phone him on 07968 279613 to get more information.
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Get involved in research
Dr Neil Patel, at London’s UCL School of Medicine wants healthy Caucasian volunteers, 65 years and over, to take part in a study. At his clinic, you would give a blood sample, a small skin sample (size of a pencil top) and have a tiny injection under the skin. Three days later, you will go back and they will take blood to test your immunity to chickenpox/shingles. You would then take losmapimod (a heart medication) for four days and repeat the procedure. Before this, you will be asked health-related questions, give a blook sample and have an ECG (heart check).
You will get a payment of £50 to compensate for time and travel.
Email: neil.patel@ucl.ac.uk or phone him on 07968 279613 to get more information.

Answer this questionnaire
Dr Paul Chazot (paul.chazot@durham.ac.uk) would like to find out what helps and hinders people from managing their pain. His team has devised a short electronic questionnaire for those with long term pain. There are only a few questions and only takes a couple of minutes to do. This is all collected anonymously so you do not have to submit any personal details about yourself.

The questionnaire can be found at: https://www.dur.ac.uk/wolfson.institute/sig/pain/coping/

If you would like more information before you go to the questionnaire, see a recording of their recent public engagement event which is focused on strategies to cope with long-term at: https://www.youtube.com/watch?v=YazQ4jNLR30

European pain event – Brussels May 2016
Our director, Marian Nicholson, was very involved in the two-day conference on Societal Impact of Pain. On day one, the meeting took place in the EU parliament building, where she explained to camera why getting the right treatment – and fast was so important to the patient and to society.  You can also watch a compilation (called ‘the trailer’) of other participants taken over the two days.  And Shingles Support Society features in the SIP booklet.

There is now real interest at European level in getting to grips with chronic pain and what that means for the individual and for society as a whole.  See a comment by a leading MEP here.


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Help the Shingles Support Society
The Shingles Support Society is a sub-group of the Herpes Viruses Association (HVA) a registered charity, offering support to patients. It was set up in response to a bequest received to help people with shingles and PHN. As a voluntary organisation, we depend to a great extent on your donations to enable us to continue to serve the community – we rely on your generosity.

Please would you make a donation? Any amount will help, no matter how small. Cash, cheques or postal orders (made out to SSS) will help to ensure our work continues. Or phone the office from 10 am till 8 pm with a credit or debit card.

Text HVUK22 pound sign and amount
Text HVUK22 pound sign and amount

You can also text HVUK22£10 (or any amount) and text to 70070.  Thank you!

Or use the MyDonate button, the donate page or why not subscribe for more information?

Perhaps you would consider making a legacy. Thank you!

Marian Nicholson, Director

Bequests
We know that many people leave money to charities in their wills. We would really appreciate it if you would consider this kind of donation. If you already have a will, you can leave something to the Shingles Support Society in a codicil, that is an addition to your existing will. This is easier (and cheaper) than getting a whole new will.

We were left money by Mr Stone, whose son informed us: “My father found the information that you supplied made such a difference to his quality of life in his final years that he wants others to benefit as well.”

Mrs Scott’s church arranged a special collection for us in her memory and donated it to our charity. We were very touched.

Mr Goldman asked the Rotary Club he was very involved with to send the money raised when he died to us: “The Shingles Support Society is my favourite charity” he told them.

As a registered charity (no. 291657) we submit details annually to the Charity Commission so that it can ensure that we are fulfilling our constitutional ‘statement of aims’. You can be sure that your legacy would go to help spread information about treatments for PHN and the new vaccine to everyone who needs it.


Health care information about shingles you can trust. The Information Standard. Certified Member.
This page was written under the Information Standard rules. It was issued on 29/10/2015 and will be reviewed no later than 29/10/2018. Full references for the statements made can be sent on request.

The Information Standard states: The HVA shall hold responsibility for the accuracy of the information they publish and neither the Scheme Operator nor the Scheme Owner shall have any responsibility whatsoever for costs, losses or direct or indirect damages or costs arising from inaccuracy of information or omissions in information published on the website on behalf of the HVA. Disclaimer: note that the blog and other personal experience stories are excluded from the scope of IS certification.

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