September 24, 2014 at 10:15 pm #17213SpaderGuest
I had my first Gout attack at age 27. My thirties were hell. In my early forties I started developing huge tophi in all the usual places. Mainly my elbows(the biggest) my right finger is “frozen” in the extended position, minor one on the knee, and the one I need to have something about on my big toe. I also have nodules on various limbs under the skin. My problem is that I wear a size 15-16 shoe. I cannot wear a shoe on my left foot without squeezing it on and crushing the toe. I’ve tried various shoes to no avail. My question is, who the hell do I have remove it. My idiot doctor deftly avoided the question by saying that the massive dose of allopurinol will shrink it. Well it isn’t shrinking. WHAT TO DO?
Would you prefer this tophi surgery on your hand? Or medication therapy that removed John’s tophi without surgery? ?:?September 26, 2014 at 3:12 am #17255Keith TaylorParticipant
I’m not sure your doc is a complete idiot, but I haven’t met him, so I’ll reserve judgment. He’s not wrong to think that allopurinol can shrink tophi, but every case is different.
From your information so far, I think you have had around 20 years of gout (?). I wonder, how many years of visible tophi?
This can be a major factor, as the longer tophi exist, the more they get “locked in.” By that, I mean that fatty deposits and other crystals and dead cells can build up around tophi, so the mass becomes isolated from the blood stream. In such cases, simply lowering uric acid might not be enough. Unfortunately, you haven’t told me your uric acid level, or even your allopurinol dose, so I’m not certain that surgery is your only option.
You need to be aware of the risks of surgery. Like all cases of gout, treatment has to balance all your circumstances. Surgery might be the answer, but it is extreme, and it does carry risks. You really must consult a rheumatologist.
Please don’t be tempted by a podiatrist unless you have exceptional reasons to trust them. I have seen many podiatrists who have conducted unnecessary surgery after years of mistreating gout patients. Do they do this through ignorance, or for the surgery fees? I don’t know, but I wouldn’t put my life in the hands of someone who deliberately accepts unsafe uric acid levels for many years, then decides that surgery is the only option.
Sorry this has taken so long to respond to. I only get notified when people login and post. If you post without logging in first, you have to wait for me to remember to check. I try to check regularly, but unfortunately, I’ve missed it this time.
Please let me know your current allopurinol dose, your last few uric acid test results and and the length of time you have had visible tophi. I might be able to suggest other treatments with more facts. However, the golden rule is: if gout is not straightforward, see a rheumatologist. That’s your best option to get rid of gout pain permanently.September 4, 2016 at 1:15 am #22547Keith TaylorParticipant
Prompted by a current discussion in the new gout forum, I added a photo to the original post. The photograph of tophi surgery is in an archive from American Society for Surgery of the Hand. It includes a discussion of the risks of all surgery, and a particular risk of tophi surgery. Tophi surgery is unpredictable. Attempts to remove tophi might cause them to spread. This can lead to tendon damage that might be severe enough to require a tendon graft.
That’s not to say that tophi surgery is wrong. But, as that surgery archive explains: “medical management is the first line of treatment”
In the new gout forum, John describes his Krystexxa experience, with tophi shrunk due to medical gouyt treatment. Though that is not allopurinol specifically, we do discuss allopurinol and it’s capacity to shrink tophi.
If you have any concerns about tophi removal, or any other aspect of gout, please ask in the new gout forum.
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