There are two types of treatments for gout – treatments for the symptoms of attacks, and treatments that prevent attacks and reduce uric acid levels to prevent long-term problems.
Ivor was relieved to find out that gout could be managed. He was pleased he could continue playing football and squash.
Many people had no problems with the medication they took to treat attacks. Some wanted to try different medication because they had heard good reports from others with gout. Michael asked his doctor to prescribe naproxen and co-codamol after reading about them on an internet forum. Arthur found that the tablets he was taking made him feel sick and very tired. He asked his GP if he could try another type of medication that his friend with gout had been prescribed. He has no problems with the new medication.
Some people thought that they could manage their gout by just treating individual attacks. A few felt that it was ‘not worth’ taking long-term medication because they were not having attacks very often. Some GPs shared these views. Many people were unaware that they could get permanent joint damage if they did not take preventative treatment to reduce their uric acid levels.
Naresh felt that he had no choice about taking preventative medication because his doctor told him about the risks of long-term problems if he did not.
Ongoing preventative treatments
Some people spent several years treating individual attacks as and when they occurred before they started taking daily medication to prevent attacks and long-term joint damage. For some, this was because their GP did not suggest taking preventative medication until that point. Others had discussed preventative medication with their GP before, but had chosen not to take it when it was first discussed. Some people did not go back to see their doctor when they were having repeated attacks so it was a while before preventative medication was discussed.
Ian did not tell his first GP about all the attacks he was getting. He now wonders if he should have asked his GP for more information about treatments.
People who decided to take preventative treatments were usually happy with their decisions and relieved when their attacks became less frequent. Like Harry and Sue, a few people decided to start taking long-term medication when their attacks became more frequent. Harry had an allergic reaction and had to stop taking allopurinol. This is a rare side effect. He then had regular attacks for several years before he went to see a specialist. He wishes that he’d had ongoing treatment earlier to prevent long-term damage.
Dealing with attacks felt like a firefighting exercise for 38 years until Harry saw a specialist. He now takes febuxostat and no longer has attacks.
Sue started taking allopurinol when her attacks became more frequent. She had no problems with the medication and no longer has attacks.
When some people were first prescribed preventative treatments they did not know they would have to take the tablets for the rest of their lives. These medications help to reduce levels of uric acid and keep them at a low level. Some people were not given blood tests to check that they were taking a high enough dose of allopurinol for it to be effective. Others who were on relatively low doses of allopurinol did not know that the maximum dose was 900mg. They thought that it might not be possible to increase their dose much more if they needed it.
Peter was prescribed allopurinol straight away by his GP. At first he did not realise that he needed to take it every day for the rest of his life.
Some people stopped taking preventative medication because it did not have the effects that they were expecting. Not everyone was told that starting the medication could trigger an attack, or that it could take up to two years for attacks to stop.
A consultant rheumatologist explains why starting allopurinol can trigger attacks and why it can take up to two years for attacks to stop.
Jeff V found it frustrating that his attacks did not stop when he started taking allopurinol. He did not understand why this was happening.
If an attack happens when someone is taking allopurinol, they should continue to take it during and after the attack, but Arthur was given conflicting advice about what to do in this situation.
Arthur stopped taking allopurinol because he was expecting it to stop his attacks quickly. He recently found out that it can take some time before attacks stop.
Several people appreciated their GP being supportive of the decisions they made about ongoing preventative treatment. There are no known unwanted side effects in later life for people who take long-term allopurinol, but some people did not want to take ongoing medication because they were worried about long-term side effects or did not like the idea of taking daily medication (for more see ‘Thoughts about the future and long-term effects of gout‘).
Runibunar was reassured by his rheumatologist that the treatments he was taking were safe. He also has regular checks to monitor his kidney function.
Some people felt that daily medication was a better option than dealing with attacks or long-term joint damage. Vic initially misunderstood what he was told about allopurinol and thought that it caused major side effects. He then found out more information and, at a later date (after a bad attack), decided to try it. He wishes he had known more about allopurinol at the start because it could have saved him ten years of painful attacks.
Jonathan did not like the idea of taking medication for the rest of his life but is now used to it. He worried about having a reaction to the medication but had no problems.
A few people were less willing to take preventative medication because gout is not a life-threatening condition. Some were already taking tablets for other conditions and did not want to take any more. A few people were prescribed allopurinol but never took the tablets. Hazel is unable to take allopurinol tablets because she finds it very difficult to swallow pills. She has to crush or dissolve her colchicine tablets in water so that she can take them during attacks.
Jean takes several tablets a day for other conditions. She has wondered about stopping allopurinol because it would mean taking fewer tablets.
Like Carole, many people we spoke to had tried to identify foods that might be triggering their attacks. Some believed that they had been able to do this but many did not find any particular foods that made a difference. Although people often believed that diet was as effective at preventing attacks and long-term damage as medication, scientific evidence does not support this view.
Even if people believe that changing their diet has stopped attacks, uric acid levels can still be high enough to put them at risk of long-term joint damage. Most people need to take daily medication to reduce and maintain their uric acid at a low enough level to prevent attacks and long-term problems. It is not usually possible for people to reduce uric acid enough by diet alone, although many people wanted to try this to avoid medication (for more see ‘Long-term treatment to lower uric acid and prevent gout attacks and long-term problems‘).