Should I see a gout specialist?

Most people with gout don’t see a gout specialist. That puts their health, even their life at risk.

That might sound like hype, but there is plentiful data to show that it’s true. The vast majority of people with gout are not getting treated correctly. In consequence, they are getting much sicker than they need to.

Most doctors think gout is easy to treat. How do they do?

The challenge with gout is that most general doctors think it’s straightforward to treat, so they don’t refer you to a specialist. Are they correct? Look at these facts:

• In one study, over half of people on allopurinol for gout didn’t have gout.
• Of 115,000 people with gout in the UK, 62% were not on any urate-lowering medication to prevent future attacks and protect their bodies from harm.
• In the same study, even those who did get urate-lowering medication waited years for it – 73% were on no urate-lowering medication a year after diagnosis.
• Most people are inadequately treated – in a US study, only 20% of people ever reached their target uric acid level. In another, 97% of people were on an allopurinol dose lower than the average effective dose.
• Most people are not monitored adequately – in a US study, 60% of people on allopurinol never had their uric acid measured, yet treatment is supposed to be targeted at getting your uric acid level into an acceptable range.
• People with kidney disease need lower doses of allopurinol and colchicine or risk further kidney damage. In a US study, 1 in 4 were getting too high of a dose of allopurinol. In another, 1 in 3 were getting too much colchicine.
• One in three people on colchicine don’t get the 6-monthly blood tests to ensure their kidneys and bone marrow aren’t harmed.

That’s a pretty sorry catalogue of poor medical care, right? It’s not without reason that gout has been called the worst-treated chronic disease.

We can’t blame everything on the doctors

Clearly, it’s a challenge to get good medical care. Even if you do, it turns out that people are mostly terrible at taking their medication correctly. In studies, up to three-quarters of people don’t take their correct allopurinol dose. One in five don’t take their prescribed allopurinol at all!

How much does it matter?

It turns out that it matters a great deal. Let’s look at the consequences of inadequate treatment for your gout:

• You might not have gout! An elevated uric acid level on its own isn’t gout, and other conditions can cause gout-like joint pain. You need a proper diagnosis by finding uric acid crystals in joint fluid.
• If you’re not adequately treated with urate-lowering medication, uric acid builds up in your body, leading to more attacks, joint and kidney damage, tophi, and possibly heart attacks.
• If you receive too high doses of medication, you could end up with kidney or bone marrow damage.
• If you’re not monitored with occasional blood tests, you can’t know if you’re taking the correct medication dose or if you’re being harmed by it.
• Here’s the killer, literally – in a US study of half a million people, those with sub-optimal treatment for their gout had a 25% higher death rate.

That’s right. Not getting the best gout treatment puts your life at risk.

What can you do?

If you’re not already seeing a gout specialist, usually a rheumatologist, ask to be referred to one. People cared for by a specialist are 69% more likely to take the correct medication; they have fewer gout attacks and fewer complications than those looked after solely by their family doctor.

Despite this, less than 5% of people with gout attacks see a rheumatologist, and less than 60% of people with advanced gout and complications do so.

These statistics show that blindly trusting your doctor with your gout care puts you at risk. Educating yourself about gout and its treatment is vital so you can talk knowledgeably with your doctor and get the best care. Then, if you aren’t seeing a gout specialist, get referred to one.

What’s your experience?

Do you have a great doctor, or do you find it a challenge to get the best care for your gout?

Share your experiences in the comment box below.