Although PV can be controlled with medication, this disease can have a great impact on people's lives. The disease symptoms and the side-effects of drug treatments can both cause problems.

Before the disease is controlled you might experience difficulty in:

• Getting information that you want.
• Coping with the high drug doses that you will need in the initial stages of treatment.
• Coping with frequent out-patient visits if your drugs have to be administered in hospital.
• Coping with the erosions themselves and the pain of the erosions.

You might also find you are misdiagnosed in the early stages because PV is a rare disease.

Once the disease is controlled you might encounter difficulty in:

• Coping with relapses and flare-ups.
• Living with pain and minor lesion activity.
• Itching and burning of skin erosions.
• Coping with the side effects of drug treatments, especially prednisolone and other immunosuppressive drugs (see ‘Side-effects of treatments’). This can range from feeling mildly ill a lot of the time to high levels of disability.
• Coping with other reported effects like muscle pain, insomnia, exhaustion or nausea.

Social impact on people's lives

Some people find that once PV is controlled, their lives are not changed too much.

Others find the disease impacts on their lives in many different ways, for example:

• Financial problems at a time of increased financial needs (for prescriptions, special dressings and creams, special liquidised food etc) (see ‘Other frequently asked questions Q12'). These problems can be caused by:
  • Having to stop work, sometimes permanently, or move into part-time work.
  • Difficulties in obtaining Incapacity Benefit and/or Disability Living Allowance.
• Slowing down, limiting what you do, keeping 'low-key' to conserve limited energy.
• Managing the social effects of PV's unpredictability (flare-ups and 'bad' days), for example having to cancel a prearranged social event at the last minute.
• The disfiguring effects of the disease: weight gain (from steroids); visible erosions on the skin which may leave discoloured marks that patients often think of as scars.

It can be a huge shock to be suddenly diagnosed with a chronic, unpredictable, life-threatening disease. People can feel very isolated and may need a lot of support from relatives, friends and Patient Support Groups (see‘ Where can I get more information?’). Many find it difficult to adjust to living with PV and accepting the probable limitations this will have on many aspects of life.

Coping with some of the on-going problems of pemphigus vulgaris.

Pain

Many patients find pain from erosions (particularly in the mouth) very difficult. They regularly take painkillers (analgesics) during the bad times. People often worry that strong painkillers may be addictive. Expert medical opinion is that analgesics (even prescription only analgesics) should not be addictive so long as you stop taking them as soon as the pain gets easier.

It may also help if you use an anaesthetic mouthwash, particularly prior to eating and toothbrushing.

Do tell your specialist if you are experiencing a lot of pain. Also, your dermatology nurse or your GP should be able to help with pain control.

Itching of skin lesions.

There doesn't seem to be an effective solution to itching of skin lesions in PV. People have tried all sorts of things. Have a look at the International Pemphigus Foundation's website to find out more.

What effect will pemphigus vulgaris have on caregivers?

All the problems that affect the person with PV can have a big effect on their partners, family members and friends.

It can be particularly hard at the start, when the disease is still uncontrolled and there is so much for everyone to deal with.

Being a caregiver comes with its own challenges. It can be hard to constantly supportive, especially if you are worried yourself. This can be particularly difficult if you are feeling that you must always appear strong and positive.

It can be very useful for caregivers to find out as much about the disease as possible. This also helps them understand the way the drug treatment may affect things like mood swings.

Both the Pemphigus Vulgaris Network and the International Pemphigus Foundation offer support to family and friends of people with PV (see ‘Where can I get more information?’).

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