Tophaceous gout – from toes to tophi. The possible long term outcome of treatment failure





This page about tophaceous gout was last reviewed, or updated, on 5 September  2014. 

Tophi (plural) gout has fascinated and repelled throughout history. But there wasn't a treatment for it until 1951 when the urosuric drug probenecid was introduced.

Other words used to describe it, are tophaceous  (singular) and tophus (singular).

WHAT IS THIS SORT OF GOUT? 

Tophi are the accumulation of the MSU crystals which themselves (sometimes, not always) form when the concentration of uric acid in serum (blood) increases. The basic process is: serum uric acid increases. i.e. the mg/dL(mmol/µmol)  figure rises –  MSU (monosodium urate) crystals begin to form –  MSU crystals grow into tophi. They appear to the naked eye as knobbly shaped chalky-like lumps. 

A first appearance in the ears is quite common.

Gout attacks very frequently begin in one of the big toes. But gout tophi usually appear after several years of gout attacks, so you have plenty of time to deal with gout before they appear. About a third of gout sufferers will have a tophus within five years of a first attack. After ten years about half, and after 20 years about three quarters. So they don't invariably appear in long term gout sufferers, but are more than a possibility if gout is not controlled.

Overall about 25% of gout sufferers have tophi to some degree. As you can see from the above numbers, they are likely to appear in the elderly. The elderly may have a real problem with dealing with tophus or tophi, if drugs such as allopurinol, febuxostat and the uricosuric drugs cannot be used.

Tophi can grow in two ways. They can grow from the original location thus causing joint and nearby bone damage. And they may appear in new body locations and in cartilage, tissues and tendons. And of course they are the reason for the unsightly skin bulging deformities, which along with the swollen purple-red toe, are gout's most vivid images. Note that tophi grow  into bones as well as on them.

It seems that tophi are more likely to appear in the colder parts of the body, those areas furthest from the heart, which are also areas where blood circulation is slower. Hence one of their favourite spots are the toes. And their appearance in places like the ear's ridges.

What level should your uric acid fall to?  The basic treatment for tophi is to get uric acid levels down to 6 mg/dL and hope that they will begin to dissolve. Studies have shown that this often happens at the 6 mg/dL, or below, level. But the 6.0 mg/dL level may not be low enough for tophi patients. 5.0 mg/dL may well be a better target, and you might have to go lower. You will come to know yours' when you notice your tophi are shrinking.

DANGERS OF TOPHI GOUT

So take note of what might happen eventually – you get to the stage of gout's development called chronic tophaceous gout.

Many people give up on gout treatment when drug medications and natural remedies do not appear to be working for them. Or they give up because of difficulties dealing with the drugs. And because many treat gout casually thinking something like "well, I only get one or two attacks a year and I can live with that."

Tophi may not be benign.  You must assume they won't be. 

* They can grow, for example, in a joint and in the bone to destroy the joint. This leads to less mobility – the use of feet, elbows, hands, knees – and perhaps joint pain unrelated to gout attack pain. You could end up getting an artificial joint.

* They can become ulcerated and septic. If they become septic this condition can lead to sepsis (septicemia) – a bacterial infection in the blood – which is serious and life threatening, and must be dealt with immediately. Doctors will check that the tophus affected area is not septic.

* They can exude pus and burst. The result of bursting is their chalky-crystal mass appearing out of and onto the skin.

*  A presentation about erectile dysfunction and gout at the European League against Rheumatism conference in Paris June 2014, explained an American study on this subject. It found that a significantly greater proportion of patients with tophaceous gout had erectile dysfunction (ED) compared to those without tophi. (In this study gout patients were more likely to have ED than those without gout). Read our gout and sex page here.

SURGERY 

If drugs don't work there is another way of dealing with tophaceous gout, especially when tophi cause the problems noted above… surgery to remove them. Surgery for tophus or tophi removal may not be available in your country. If this is relevant to you find out if it is.

NATURAL GOUT REMEDIES AND TOPHI

It is highly unlikely that any of the natural gout remedies can deal with tophaceous gout, nor the various gout diets. I have never read an account of this occurring. But some can be of assistance. Diets such as a low purine diet and the Zone diet can help because they can reduce uric acid levels. Drinking lots of water is always <i>de rigueur</i> (because it dilutes uric acid). Alkaline water and other alkalizing agents help too (because they make water more soluble or alkalize the urine).

Always discuss using natural remedies with your doctor, and if you consider using them in combination with uric acid lowering drug medications that can be used in tophi reduction such as allopurinol and febuxostat.

GOUT MEDICATIONS AND TOPHI GOUT 

The good news is that pharmaceutical companies now have drug medications which can deal better with tophi than ever before. 

One, febuxostat, is approved in countries that are members of the European Union and the U.S. and in many Asian countries. (EU brand name Adenuric, US brand name Uloric). There are plans to make febuxostat available in all major world markets over the next few years. Find out if, or when, it has been approved in your own country if you live elsewhere. 

Another, Krystexxa (pegloticase) was approved by the U.S. FDA in September 2010. And by the European Medicines Agency in January 2013 for adults with chronic tophaceous gout in the E.U. 

Read about the effectiveness of drug medications, including new ones, in tophaceous gout treatment. Click on the links below:

You can read about Febuxostat and Allopurinol and tophi here.

The new gout drug Pegloticase (Krystexxa) was approved in mid September 2010 in the US. and in the E.U. in January 2013. It offers hope in tophaceous gout treatment. You can read more about pegloticase and tophi here

Lesinurad and tophi In August 2014 AstraZeneca PLC, the developers of lesinurad through its subsidiary Ardea Biosciences, announced results of lesinurad’s  phase three trials. These included trials on tophi patients. where lesinurad was tested in combination with febuxostat. Results were good enough for the company to say it would proceed with applications for marketing approval from health authorities, probably the U.S. and E.U. Read more on our new gout drugs page.

TOPHI GOUT AND GOUT KNOWLEDGE 

It's important to be aware of this. Gout sufferers who are at the tophi gout stage need to be even better informed about gout.

A 2013 study (1), and an editorial article about it, (2) reported that intercritical gout (the period between gout attacks) and tophaceous gout  were treated according to treatment guidelines by less than 20% of 838 primary care physicians (GP's). This study was conducted in the United States, but if you live elsewhere you would be wise to assume a similar result in your country.

(1) Harrold LR, Mazor KM, Negron A, Ogarek J, Firneno C, Yood RA. Abstract. Primary care providers' knowledge, beliefs and treatment practices for gout: results of a physician questionnaire. Rheumatology (Oxford). 2013 Sep;52(9):1623-9. 

(2) Nicola Dalbeth, Management of Gout in primary care: challenges and potential solutions. Rheumatology (Oxford). 2013, on behalf of the British Society for Rheumatology. 


Related page - You may also enjoy

Read about a new gout drug that may become the most successful at clearing up tophi.



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