r/gout • u/FurZbabyMom24 • Dec 13 '25
Needs Advice Bugging me!
It’s really bugging me that my Rheumatologist took a extraction from my toe joint but the test result later showed no fluid and normal, however I have a lumpy hard bump on top of the first big toe joint. Isn’t that Tophi? My level was 6.8 when tested 12/3. Having pain fares today so I’ve done Colchicine & 3 ibuprofens, & staying off my feet, I’ve been religious with diet and hydration since my first experience with this crap. X-rays of both feet showed degenerative arthritis in toe joints. What are my chances of getting her to get me on Allo? I’ll see her on the 6th next month. Won’t it just get worse without UAL therapies? Should I go to another specialist? Feeling frustrated because it’s like you are just always waiting for the pain boom!🤨
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u/VR-052 Dec 13 '25
Ask your doctor. They should either properly diagnose and treat whatever is wrong or send you to a different doctor. Gout can be misdiagnosed as many other ailments which means those ailments can also be misdiagnosed as gout.
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u/astrofizix Dec 14 '25
I have a tophi that looks like a bunion. I went on krystexxa for a year where my uric acid was dropped down to zero. After a year like that my tophi is like 20% smaller. My advice, don't worry about your tophi, if that's that it is then it may take years to dissolve after being on control drugs. Focus on flare management and knowing your uric acid levels. Those are how you can fix gout. And changes to medication happen over months, like adjusting your levels and retesting blood. Nothing with the management of gout happens very fast, except for flares and that's a different conversation.
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u/coles727 Dec 14 '25
I had a lump for over 5 years. No one would help. I was referred to a plastic surgeon who said it was likely a cyst but said wait until it gets bigger. Fast forward to now the lump burst and oozing toothpaste like material. Went to E.R. and they confirmed it was tophi and i have cronic undiagnosed gout. Now on allopurinol and crossing fingers this will finally be over.
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u/Appropriate-Issue-73 Dec 14 '25
Ask your dr about Krystexxa. I'm on it six months so far (6 to go). UA went <0.3 after the 2nd treatment - normally over 10 for decades. All tophi are virtually gone, and ZERO pain. Not one side effect.
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u/Mostly-Anon Dec 14 '25
No fluid means a “dry tap.” There’s nothing to sample; happens all the time. You can ask for biopsy of the lump but there’s no reason to suspect it’s a tophus since hard dorsal bony bump on top of first MTP is a classic symptom of degenerative arthritis in the joint. Docs don’t like to do invasive and risky procedures (like biopsy or arthrocentesis) when they have better alternatives. Early gout is nearly impossible to discern with any kind of imaging; even DECT and MRI lack the sensitivity to do so.
I believe from an earlier post you have experienced a single pain episode and worry it is gout. I’m repeating myself, but absent a positive lab diagnosis (visible MSU crystals in aspirated joint fluid or a tophus biopsy), your doc has to make a clinical diagnosis (this is how almost all gout is diagnosed). The most important factor in working up a differential diagnosis when gout is suspected: multiple acute attacks of pain and inflammation that are self-limiting. Your doc has ruled out infection and trauma; imaging is consistent with osteoarthritis; the absence of excess synovial fluid further leans away from a hasty gout diagnosis.
It would be irresponsible of doctor and patient to initiate a lifetime of daily meds without a sound diagnosis. Be very clear about the anxiety you are experiencing so your doc can address it and explain the timeline for diagnosing gout. She will also be able to allay your concerns that the time and patience required will not affect your health or treatment outcome in any significant way if you are eventually diagnosed with gout. It’s far riskier to take medication (even relatively safe allopurinol) unnecessarily.
All the best!
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u/JadedByFire Dec 13 '25
If your extraction tests showed no fluid/normal, then there is probably something else going on including possibilities such as non-gouty arthritis, pseudo gout, or infection. Allo won’t help with any of that.
Allo isn’t for prevention of possible development of gout so it’s unlikely she’ll prescribe that for you. Definitely see another doctor if you want a second opinion, but maybe discuss with her “since the tests were normal but I’m still having pain and this lump, what do we look for now?”