Keith’s GoutPal Story 2020 Forums Please Help My Gout! Tophi or not tophi…

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  • #22093
    DRS
    Participant

    Hi there

    I saw a new doctor last week after my latest rheumy moved on.

    This was for what I thought was a swollen bursa on my elbow (2cmx2cmx2.5xm roughly) not rock hard, but spongy hard (if you get my meaning). It came up over 24 hours after what I thought was a little itchy bite on my elbow.

    The doctor insists that there is no way a Tophi can be drained or aspirated? I’m not convinced as I’ve seen quite a bit on the web AND the doctor has already given me a shot of medication which is known to interfere with something else I have to take, which a nurse had to give him hell for (even though he insisted there should be no problem) – not great and I can feel the adverse effects right now, I can tell you. T

    Can anyone shed some light on the tophi issue? I’m worried this guy doesn’t know his onions…

    Thanks


    Draining Gouty Tophi (photo courtesy Science Photo Library)
    #2738
    Al O’Purinol
    Participant

    Small Tophi

    Does the small tophi disappear with gout treatment over time? Or does it eventually get worse over time?

    #3934

    Tophi will disappear eventually, but only if the treatment you are taking keeps your uric acid level below 6mg/dL

    Uric acid testing is a vital part of any uric acid lowering therapy. If the dose of whatever uric acid lowering medication you take is insufficent, then you are wasting your time.

    #4118
    zip2play
    Participant

    I have been treating my gout without acute attacks for well over a decade keeping my uric acid low with allopurinol. I still have a few small tophi.

    Here's my take on it:

    When uric acid/urates come out of solution it causes an attack by the body (hence the murderous pain) and part of the heal;ing process is the body's “walling off” of the offending crystalline material. Once the bloodstream and lymph can no longer “see” the crystals, the inflammatory process abates. What you are left with is a deposit that is more or less visible to the bloodstream and thus some can be reabsorbed into circulation as serum uric acid levels remain low. But some is probably VERY WELL ISOLATED and will NEVER come in content with circulating fluids. Thus I expct a certain amount of tophaceous materia, once formed, will NEVER be dissolved.

    I think that most people with tophaceous gout have seen this.

    I had a really crazy tophi on my outside right thumb for years. It would periodically ache, not the screeching pain of gout, but a deep soreness of a wound. Slowly, over the course of a year this lump decided to migrate. It went down the last thumb segment month by month and then started moving under the nail. L:ittle by little this mountain formed and millimetered it's way under the nail making a 1/4 inch MOUNTAIN. It was achey and deforming as it went. I got sick of it and took a red hot paper clip and perforated the nail and I made a slowly oozing “volcano” that for about 2 weeks drained the slipperiest milky white fluid I have ever seen, more slippery than motor oil. I examined several drops as they dried on a microscope slide always into a mass of THOUSANDS of dendritic crystals. Almost the entire bulk of the original tophus exited through the volcan leaving only the teeniest little bump on the thumb joint, or none at all…I'm not quite sure.

    Some people, even with well controlled gout must have their tophi surgicvally removed if they want them gone.

    #22100
    Keith Taylor
    Participant

    Is this new guy also a rheumy? Normally, if you wanted a tophi draining, I’d recommend a rheumy over any other doctor. I have heard in the past of some rheumatologists that don’t understand gout, but I’m hoping they are a very rare breed.

    Without professional examination of your elbow, it’s impossible to know if draining is an option. It is certainly possible to get a large tophus on the elbow, cos I have one. But the spongy-hard stage that you describe was years ago. I do not believe I had a tophus at that stage, or maybe only a very small one. I think mine was bursitis caused by uric acid crystals affecting the bursa. When gouty swelling around the bursa disperses, then the bursa itself shrinks back to normal. Or at least it did in my case.

    Anyway, even if your elbow can be drained, the proper solution is to get uric acid under control. Otherwise, it will just keep flaring. Worse each time.

    It sounds like your doctor might not be very effective at advising you on the best uric acid lowering treatment. If you don’t have an option for a better doctor, then we’ll just have to educate this one. I can help you with a safe uric acid reduction plan, but what will you do about other health problems?

    #22108
    DRS
    Participant

    The bursitis is exactly what I said originally. According to this rheumy NO TOPHI CAN BE DRAINED. Yes, he’s a rheumy – I see other specialists otherwise so no worries there.

    I’m allergic to allopurinol – I’ve got a UA reduction plan (and I can move to febuxostat if needed), anything you’ve got to contribute would be great,thanks

    #22109
    Keith Taylor
    Participant

    How very strange. You know that tophi can be drained, I know that tophi can be drained, yet your rheumatologist says they can’t!

    In his defense, surgery in any form should always be a last resort, and the general advice is usually along the lines of “do not attempt draining or surgical removal of tophi unless they restrict mobility, or are likely to burst.” It is much safer to encourage tophi shrinking by lowering uric acid significantly below 5mg/dL.

    There is an interesting summary in “The last defence? Surgical aspects of gouty arthritis of hand and wrist”. Though that article is from Hong Kong Medical Journal, it does cite several studies by American and British rheumatologists.

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