Shingles Support Society.

This document contains:
Shingles - Q and As
Post herpetic neuralgia (PHN) - Q and As
Display materials for doctors
Trials of new treatments in the USA
Help the Shingles Support Society
Notes for patients from Dr Bowsher
Notes for doctors from Dr Bowsher
Links to pain organisations

Shingles

1 - Is shingles common?
About 250,000 people in the UK get shingles every year. About 100,000 people of these are affected by post herpetic neuralgia (PHN).

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

3 - Who will get shingles?
Anyone who has had chickenpox can develop shingles – and most people have chickenpox in childhood: it is one of the common childhood illnesses and is usually trivial. (Chickenpox in adults can be more distressing; but it is generally no more serious than in children.)

Shingles is more likely to occur in older people and by the age of 85, around 60% of us will have had shingles.

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

4 - How do people get shingles?
When you recover from 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 comes out as shingles.

5 - Is shingles infectious (catching)?
People do not catch shingles from each other. A person with shingles cannot give another person shingles, nor can you catch shingles from someone with chickenpox. In fact, it has been found that when people who have had chickenpox encounter the disease again, it increases their immunity and means they are less likely to develop shingles.

Chickenpox is infectious - people can give it to someone who has not already had it. Someone with shingles may give another person chickenpox if that person has never had chickenpox before. This is because it is the same virus. Once people have had chickenpox, they do not usually get it again.

6 - What does shingles look like?
Most often people get shingles on one side of the trunk or torso, front and back, in the area covered by the affected nerve. Occasionally it occurs elsewhere on the body or 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.
• Blisters come up, filled with fluid. These then burst and weep and turn into sores. They may not come up all at once, but form and slowly heal over a period of 2 to 5 weeks. The skin then crusts over and heals up, apart from a little sensitivity or 'nerve ache' which soon disappears. This may signal the end of the shingles for many people.

7 - Can you get shingles in the eyes?
Rarely, shingles can occur inside the eye. This must be treated with antiviral medication, as if untreated the eye may be damaged. It can be confused with herpes simplex virus and herpes keratitis (infection of the eye).

8 - Can shingles be treated?
Your doctor may prescribe a course of Famvir, Valtrex or Zovirax (aciclovir) tablets. These do not work for everybody, but if treatment is started within 72 hours, it may reduce the severity of the episode. This is why 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.

9 - What can I do to help my shingles?
Keep the sores clean, but do not used scented soaps or bath oils and do not over wash as this will delay healing. You can sooth the rash with ice cubes 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 or a soothing lotion (such as calamine) applied to the rash. Wear loose fitting, comfortable clothes preferably in a natural fibre such as cotton. You may find vitamins help, especially those related to skin and nerve healing like vitamins A, E and B-complex. Most vitamins depend on a good supply of other vitamins to function efficiently, so do make sure your diet contains plenty of fresh fruit, vegetables and cereals. Remember - the sores will clear up, so try not to worry. Ultrasound is sometimes effective in the acute stage, particularly for the head and face.
Our 19 page information pack contains two pages of self-help tips from other people who've had shingles. To get this pack, send an SAE with a small donation to the Shingles Support Society, 41 North Road, London N7 9DP.

POST HERPETIC NEURALGIA (PHN)

1 - Is PHN common?
About 100,000 people of the 250,000 people with shingles each year are affected by post herpetic neuralgia (PHN).

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 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. Not only does the function of the damaged nerve become abnormal, as is shown by the loss of ordinary sensation, but changes seem also to be induced in the spinal cord or central nervous system as well. We know this because, unfortunately, cutting the affected nerve does not cure the pain of PHN. As you get older, your chance of developing PHN increases.

4 - 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"

5 - How can PHN be treated?
Ordinary painkillers have little effect on PHN, however Tramadol (a strong, prescription-only, painkiller) has been shown to help.

A recent trial found that controlled-release morphine 91 mg or methadone 15mg "effectively relieved pain" and did not cause fuzziness unlike the tricyclic antidepressants.

Other prescription items that your doctor could consider are listed: these all take a while (3 or 4 weeks) for the full effect to be noticed, so do not give up too soon. Because the antidepressant drugs are much cheaper than the anti-epileptic drugs, your doctor may want you to try these first. Axsain cream (also on prescription) is an alternative for people who don’t like pills. See Dr Bowsher’s Notes for Patients for more details.

5.1 - Antidepressant drugs: If your doctor has prescribed one of the tricyclic drugs to combat PHN, you may find it causes drowsiness and/or a sensation of ‘dry mouth.’ You should start off at a very low dose and gradually build it up. ‘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 (which was developed to control epilepsy) has been shown to be an effective way to block PHN and has been licensed by the Medicines Control Agency for treating PHN and other neuropathic pains. (In the US it is now used more for controlling pain than epilepsy!) Start with a low dose, and increase to about 400mg three times a day. It does not interfere with other medication you may be taking and has remarkably few side effects even with dosage as high as 800mg three times a day.

5.3 - Axsain cream (made from chilli peppers or ‘capsaicin’) has been proven to be effective at stopping the pain. You rub it on, or 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, or numbing, cream about 15 minutes before applying Axsain. This is ‘lignocaine BP’ which can be bought, without prescription, as a 2% gel or a 5% ointment. If your chemist doesn’t have it in stock, s/he should be able to get it in for you and it is cheap, probably less that £1.50. Lignocaine 10% spray can be bought under the brand names Xylocaine or Stud for around £5.50.

6 - 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. These 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. Send an SAE with a small donation to the Shingles Support Society, 41 North Road, London N7 9DP.

7 - Could a TENS machine help?
TENS machines give tiny buzzing sensations and prevent the nerves from sending their false messages to the brain. You should be able to try a TENS unit before you buy it to see if you are one of the people who benefits from it - or make sure the company has a money-back guarantee. Some people have found that ultra-sound has relieved their pain.

8 - 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 an SAE with a small donation to the Shingles Support Society.

9 - Could I be referred to a Pain Clinic?
Your doctor could refer you to a pain clinic: either NHS or private. The Pain Society, 21 Portland Place, London W1B 1PY (info@painsociety.org) will send details of your nearest clinic and a 10 page booklet on the treatments they use.

10 - Are there other organisations that can help?
The British Holistic Medical Association can sell you a tape and booklet by James Hawkins on 'Coping with Persistent Pain' from the BHMA at 59 Lansdown Place, Hove, E. Sussex BN3 1FL (Email: bhma@bhma.org; tel. 01273 725951) £9.20. (This includes post and packaging.)

11 - Links
www.herpes.org.uk/shingles Dr Bowsher’s pages on drug treatment (one page for patients, four pages for doctors)
www.neuropathy-trust.org Neuropathy Trust
www.liv.ac.uk/pri The Pain Research Institute
www.painconcern.org.uk Pain Concern, a self-help charity

Trials of new treatments in the USA
HOPE Research Institute in Phoenix, Arizona USA has two clinical studies for PHN. If you are near there and would like more information on the trials, call Hope’s research clinic at 1-602-288-HOPE(4673). To qualify to take part you would have to fit in to this category: Study #2 is a medication for PHN – for people 55 years or older who have had persistent pain for at least 3 months.

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 or postage stamps, cheques or postal orders (made out to SSS) will help to ensure our work continues. Perhaps you would consider making a legacy. Thank you!

Marian Nicholson, Director

Legacies
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 to everyone who needs it.