Looking after your general health

It is important to have regular check-ups with your GP who can help you look after your general health and help manage any drug side-effects with appropriate therapies.

Sometimes different doctors and specialists may be involved with looking after you. It is best to check that they are in contact with each other, so that each doctor's treatment is working in harmony with the others. They should all know your current test results.

Although it is not always easy, it is a good idea to have a regular exercise routine (even if it is gentle). This should:

• help with muscle and joint pain and maintain muscle strength.
• help counteract the risk of osteoporosis.

Since PV often occurs in the 40’s and 50’s, many women can find they have to cope with PV and the menopause at the same time. They may therefore need extra help from their doctors in coping with increased menopausal symptoms.

Weight gain, diet and nutrition

Many people are very concerned with nutritional aspects including weight gain and diet.

Eating a healthy diet is really important for PV patients to reduce the unwanted effects of medication on general health.

Some of the side-effects of taking corticosteroids can be reduced by diet. Eating a diet rich in calcium, such as milk, cheese and yoghurt will help reduce the risk of osteoporosis (see ‘Side-effects of corticosteroids’ and‘ Frequently Asked Questions Q10’)

The main points to remember whilst taking corticosteroids are:

• Try to keep weight gain to a minimum by having a diet high in protein and low in carbohydrates and fat.
• Try to keep salt intake low.
• Try to eat foods that contain potassium such as fruit, spinach, potatoes and beans. This is because corticosteroids can reduce potassium levels.
• Take vitamin D and calcium supplements to help reduce the risk of osteoporosis (see ‘Side-effects of corticosteroids’). Your doctor will be able to help you work out the right amounts to take.
• Eat plenty of fruit, vegetables and beans because they can help reduce cholesterol levels.

For more information about diet and nutrition in PV go to: http://www.pemphigus.org/gusandnutrition.html

If pemphigus is active in the mouth it is particularly hard to have a good diet.

• In this situation many people find the best thing to do is liquidise food and, if necessary, have it through a straw.
• You could try using an anaesthetic mouthwash before eating to dull the pain.
• If your throat or mouth is particularly painful, try ice cream, sorbets or even sucking an ice cube. This can help dull the pain.
• If you know you are eating a very restricted diet, you may want to take a good vitamin supplement until things improve (remember to talk to your doctor and/or dietician before changing your diet).

Foods as triggers

It is thought that some foods can act as triggers for PV in some people. More information about this area is available at: ‘Does anything make pemphigus vulgaris worse?’ and http://www.pemphigus.org/articles/healthlifestyle/am_foodseat.html

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