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Written by: Jacob Woodring July 7th, 2024 (edited on 12-7-2025)
My Tophi Gout Experience: What I Wish I Knew Sooner
Tophi gout is something many people hear about, but few truly understand until they’re living with it. My journey started when I was just 13 years old in the year 2000, long before information about pediatric gout was widely available. What began as a “simple ankle twist” turned into a 25-year battle that reshaped my body, my health, and my entire outlook on life.
If you’re dealing with gout, strange bumps, or long-lasting flare-ups, I hope my experience helps you understand what’s happening inside your body and how to get proper care before things progress.
Tophi Gout Beginnings (2000–2002)
Back in 2000, gout diets were extremely vague. Every article said the same thing:
- Avoid red meat
- Avoid fried foods
- Avoid alcohol
- Avoid organ meats
None of that helped me because I was 13 years old. I didn’t drink. I rarely ate red meat. And there was practically no information about pediatric gout in the early 2000s.
My first tophi deposit likely appeared when I was 16 years old in 2002. It looked like a hard white-yellow bump on my ear. I assumed it was acne—until I touched it and felt how solid it was. When I squeezed it, a small, pebble-like chalky substance came out. I had no idea that was uric acid.
There simply wasn’t information online about tophi, unless you were a specialized rheumatologist doing deep research. So I ignored it.
The First Visible Signs of Tophi (2004)
By age 18, small bumps formed on my knuckles. Again, I didn’t know the word tophi. Most doctors didn’t explore it, and pediatric gout specialists were nearly nonexistent.
A major lesson I learned the hard way:
⚠️ Never squeeze or pop tophi on your own.
Tophi build up over years—not overnight—and breaking the skin can cause infections or permanent damage.
A New Rheumatologist and a Life-Changing Discovery (2006–2007)
In 2006, my family moved from Modesto to Stockton, California, and I finally saw a real rheumatologist. She was shocked that no one had aggressively treated my gout for six years.
Around that time, I had a small bump forming in my left wrist. Over the next year, it grew into a golf-ball-sized mass. My rheumatologist ordered surgery but warned me it could be:
- A benign cyst
- Or something malignant
She never mentioned tophi.
The surgery was supposed to last one hour. It took four.
The surgeon discovered a massive tophi deposit that had eaten into my tendon. My hand was curled inward before the surgery, and I couldn’t straighten it.
That surgery opened my eyes—and started my deep research into tophi.
Living With Tophi After the Surgery (2007–present)
After 2007, the tophi continued to appear:
- Knees
- Wrists
- Knuckles
- Elbows
- Ears
- Lower legs
I made many mistakes, including popping them myself, which led to multiple infections. I cannot stress this enough:
Do NOT manually drain your tophi. Always involve a doctor.
If you’re curious about my early diagnosis story, I wrote more about it here:
https://thefamousjacob.com/pediatric-gout/ “Warning About Pediatric Gout – Do Better Medical Field”
What Is Tophi Gout?
Tophi are hardened clumps of uric acid crystals that build up under the skin after long periods of uncontrolled gout. They can be:
- Hard like rocks
- Soft and squishy
- Chalky when broken
- Invisible on the surface yet deep inside joints
Most people don’t develop tophi right away. They form after a year or more of poorly controlled gout, although for me it started earlier due to pediatric onset.
Tophi can show up in places you wouldn’t expect:
- Spine
- Feet
- Organs (rare but documented)
Studies from China show spinal gout and organ involvement. The images are graphic, so be prepared if you read those medical reports.
Treatment Options for Tophi Gout
1. Allopurinol
Great for lowering uric acid, but not always enough for removing tophaceous bumps.
2. Krystexxa (pegloticase)
This IV infusion can literally dissolve tophi.
It is expensive, but:
- Insurance may cover
- The drug manufacturer offers assistance
- Doctors can advocate for approval
This is currently the most effective treatment for severe tophaceous gout.
3. Newer Biologic Options
A few alternatives to Krystexxa exist, but they are newer and less studied.
4. Tophi Removal Surgery
Only recommended when:
- The tophus limits mobility
- It risks damaging joints
- It’s infected
Surgery carries a high infection risk and should be the last option.
My Best Tips for Anyone Living With Tophi
Tip 1: Never assume a bump is “just” tophi.
Always have your doctor check it. Sometimes what looks harmless is not.
Tip 2: Find a rheumatologist who fights for you.
This includes:
- Regular lab tests
- Med adjustments
- Steroid injections when needed
- Taking your pain seriously
If they dismiss your symptoms, move on.
Tip 3: Support your kidneys and liver.
These organs remove uric acid.
If they’re struggling, your body will produce more uric acid and it’s a never ending cycle.
Tip 4: Don’t pop tophi. Ever.
I have permanent knee damage from infections caused by DIY popping.
Tip 5: Don’t let your gout ruin your confidence or relationships.
You deserve to exist, love, date, and feel comfortable in your own body.
Good partners won’t care if you have bumps.
Tip 6: Ask your doctor about Krystexxa.
If they refuse to explore it, or don’t know about it, find one who does.
Final Thoughts
If you’re dealing with tophaceous gout or think you may be developing tophi, you are not alone. I hope my 25-year journey gives you clarity, hope, and guidance as you navigate your own health.
If you have questions, drop them in the comments below.
I update this site with new gout information, personal experiences, and helpful tips.
And if you want more detail, here’s a video I made explaining my tophi journey:
WHAT IS TOPHI GOUT — MY EXPERIENCE & HOW TO TREAT IT https://www.youtube.com/watch?v=yjIRSjdSzJI
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