Terrors Of Tophi
November 13, 2012 in Gout Symptoms And Causes Forum
They frequently form under the skin after prolonged uric acid over 6.8mg/dL. As uric acid crystals form, our white blood cells attack the invading crystals, so tophi are a mass of crystals and dead cells. Over time, these become harder, and can reduce mobility or burst through the skin, risking infection.
Tophi will slowly shrink when uric acid is below the crystallization point. They shrink faster when uric acid is lower. Modern uricase treatments, such as Krystexxa (pegloticase) shrink tophi fastest. Often, gout patients have to resort to surgery, though I have seen one video where this is simply because the doctor had no idea what uric acid levels should be.
Here are some tophi discussions from the old forum:
Toe Tophi Prevents Wearing Shoes
From Gerry in Queensland:
I have suffered periodically with gout in my feet for several years – maybe every 6 months but it usually lasted only a few days. About 9 months ago it started again but seemed different so I did not recognise it as gout. My middle toe on my left foot had a white lump which I now know was a sure sign, but I put it down to bad fitting shoes.
After a while the lump burst and crystals formed on top. My doctor told me it was gout and put me on Lengout (Australian brand of colchicine) but I was unable to continue taking this as it gave me bad diarrhoea. I am now on Probenecid to lower the uric acid and a recent blood test put the uric acid level at 0.32 mmo1/L
I have had the tophi scraped off several times which was rather painful process, and as I have been unable to wear shoes (too painful) for over 7 months, my toe keeps getting infected.
My main aim in life is for the wounded toe to repair and once again be able to put on shoes.
0.32 mmol is just over 5mg/dL. This is OK as a long-term target, but where tophi are present, you should aim much lower if you want to shrink tophi faster.
Is Surgery For For Tophi Removal Necessary?
Over the course of the least year a tophus has appeared on my left big toe on the cross joint beneath the toe nail. I now have pretty much zero movement in it in terms of bending the toe. I've achieved this after six years of being a gout sufferer.
I've been on 300mg allopurinol now for the last three months an the lump seems to still be gradually increasing in size (very slowly).
About six months ago I consulted a consultant surgeon in London who told me that the it was best to leave it be and that movement in the joint had gone permanently and that he would operate if it became painful to remove the tophi by sawing away the joint either side of the tophi and then re attaching the toe.
My question is whether the allopurinol is likely to melt the tophi away in time, or whether it's best just to go for the op and get it done with asap. I get a little pain at present but I'm wondering if this is likely to increase? Or, is there any other alternative I should check out before going for an operation.
The dose of allopurinol is not important. Uric acid blood test results are the key. Get tested, and chances are that increasing allopurinol to maximum dose will shrink the tophi without surgery. Remember, surgery often makes gout worse, and has health risks, so best to use it only if low uric acid is not shrinking tophi fast enough.
Infection Risk From Burst Tophi
My husband is only in his 30s and has had chronic gout for about 6 or 7 years. His attacks have increased. He gets them almost bi-weekly.
We have changed his diet to try to reduce his uric acid level. He has been taking allpurinol and colchicine. His regular doctor currently prescibed prednisone. After all this time we have finally gotten the regular doctor to refer him to a rheumatologist. However, his appointment is not until December.
During the course of about a year or two he developed a large nodule on his big toe. About seven months ago, he poked a hole in it with a needle. Why he did this, I have no clue. This sore has never healed. From the hole came a whitish, thick fluid. His doctor told him to "not do that again." The hole formed a scab over it. However, two days ago the scab burst open. The nodule or tophi (I saw it called that on your site) has begun to bleed and leak the white fluid again. It is seriously swollen and causing my husband much pain. Yesterday, he soaked it most of the day in either peroxide or alcohol.
Should my husband see a doctor about this? We feel like the regular doctor is no help. He has visited the emergency room so many times with flare ups that they know him by name. However, the tophi has never been bleeding and oozing like it is now. We are unsure about what course of action we need to take, but do not know who to seek medical help from. No one around here takes his gout seriously enough to help.
My response was:
Your husband should seek emergency treatment for the tophi – there is a serious risk of infection.
I hope the rheumatologist can finally get your husband on treatment that works. Perhaps you could write to him to ask if there is anything that can be done before December.
Obligatory Horrendous Tophi Photograph
Jeff B (who claims to live in Misery) wrote:
What are the circumstances that would require tophi removal, and is it advantageous to get the little buggers removed? If these things are little mines of urate crystals, then why not have them surgically removed from the situation?
I have developed what can only be described as a ball of tophi at the end of my right big toe. It looks like a half marble sized ball that is hard and painful to the touch. This is also remarkably close to the joint that has given me 99% of my attacks over the last few months. Remove the gout mine, and remove part of the problem?
It seems logical in my mind. Understand that I am an athlete, so going under the knife is not my first preference.
To which the ever-reliable zip2play responded:
You are right.
But the reason they aren't removed until they get grossly big and interfere with a joint is that all surgery carries the risk of infection/allergic reaction to anesthetics/death.
The upside of surgery is that gout seems to be deposited JUST UNDER the skin. The body seems pretty successful at getting a lot of this cement OUT of the joints. My only tophus, a little one on my little finger, is about 1/8 inch up from the joint (that never caused any pain.)
Please share your tophi experiences or as questions about tophi that are not answered in the tophi guidelines.
Find more (see gouty search hints).