Finding information on gout

People spent a lot of time looking for information when they were first diagnosed, but later tended to look only occasionally or if they had another attack. Information about the causes of gout and how to prevent attacks was particularly important. Some people wanted to know more about medications and possible side effects, and many looked for information about diet. Most people would like more research to be done about gout, and more information specifically about women and gout.

Some people wanted as much information as possible, while others preferred not to know too much. Jill thought that too much information could be overwhelming and it was best to know just the basics. Several people were pleased with the amount of information that their doctors gave them about gout. Sometimes GPs explained the causes of gout and treatment options, but other GPs did not. A few people were given booklets or print-outs of information. Others did not feel that their GP had given them enough information.
A few people wished they’d had more information earlier about treating gout. Many would have liked more information about diet from their GP. Eric felt that he was given less information by his doctor about gout than for other health conditions. Several people thought that leaflets about gout in GP surgeries would be useful. 

Some people were given different advice from different doctors about what medications they should take or how they should take them. Tony was given different advice by two GPs about when it was best to start taking allopurinol. If an attack happens when someone is already taking allopurinol, they should continue taking it during and after the attack, but Arthur was given conflicting advice about what to do in this situation.
Many people used the internet to find information. Some said it was difficult to find information before the internet was available and others asked friends to look on the internet for them. It was difficult for some people to know what information they could trust, particularly when many products were being advertised as herbal remedies for gout. Eddie’s doctor warned him to be careful about ordering any tablets or remedies for gout on the internet.

Some people found the internet useful for finding out how typical their experiences were. They appreciated knowing that they were not alone in having gout. Several were surprised to discover how common gout is. 
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Michael found out on a forum that he could buy a kit to monitor his own uric acid levels. A few people thought that the fact sheets on the UK Gout Society website were good. Pat found the Arthritis Research UK (ARUK) booklet on gout helpful and easy to understand. Janette found information from the Gout Association helpful. A number of people joined internet support forums or discussion groups for people with gout.
Many people found a lot of conflicting and confusing information about diet and complementary treatments on the internet. The evidence about diet and gout suggests that it is only excessive consumption of high purine foods (e.g. red meat, offal and shellfish) and alcohol (particularly beer) that should be avoided. These foods can be eaten in moderation and there is no evidence that it is necessary to avoid them entirely. A few people bought gout recipe books to give them ideas about how to eat fewer foods that were high in purines. (For more see ‘Diet and self-management for gout’).
People had often been given dietary advice by health professionals about other health conditions they had, but only a few people received specific advice about gout. Some found that the dietary advice for their other health conditions conflicted with information on gout. They found it difficult to work out what they could eat that would not cause problems. Several people believed that their doctors would not have time to discuss gout and diet with them or be able to give them any more information. A few thought that it would be helpful to discuss gout with a dietician.
A few people looked at medical guidelines and academic publications about the diagnosis and management of gout. Several looked for information in books or read articles in newspapers and magazines. Friends, colleagues or family members sometimes passed on information that they had come across. Relatives or friends with gout also passed on tips that they’d found helpful.

Some people were worried or frightened by information they came across about people who had severe gout affecting many joints. A few had seen images on the internet that scared them. Several people were worried when they found out about the long-term damage that gout can cause if uric acid levels stay high. Sue had not looked on the internet because she did not want to frighten herself. She, like others, preferred to rely on information from her doctor. Jonathan said that the information his rheumatologist gave him was ‘fantastic’.
A few people had seen stories on television or in newspapers in January 2013 about the first person in the UK to have a hand transplant. They were shocked and concerned to find out that he had stopped being able to use his own hand because it was badly damaged by gout. Other people had read about the comedian Mel Smith, who died in July 2013 and had become addicted to painkillers he was taking for gout. Both of these situations are very rare.

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Last reviewed December 2016
Last updated December 2016


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