Written by: Jacob Woodring 7-26-2024
Let’s start with my journey with tophi gout
Tophi gout beginnings in the year 2000
My journey started in 2000 when a simple twist of the ankle turned into a rough 25-year battle with gout. There was not much known about pediatric gout in the rheumatology field back in 2000. Little did I know that tophi gout was going to be the hardest part of my journey.
The “diet” back in 2000 for gout was super vague. Internet articles talked about not eating red meat, organ meats, fried foods and stop drinking alcohol. That advice didn’t help me because I was a child. I was not drinking alcohol at the age of 13. Not to mention I barely ate fried foods, and my parents weren’t rich enough to feed me red meat on the daily.
When did I develop my first tophi deposit? It was probably at the age of 16 and the year was 2002. I saw this weird yellow white bump on my ear. Being 16 years old, I naturally had acne and I thought that was it. Then I touched it and it felt hard. Most acne pimples are soft to the touch, this felt like a rock inside of it. I squeezed it out, not knowing any consequences, and it looked like a small pebble popped out that was white.
I didn’t think anything of it. Unless you were a rheumatologist that dug deep into their research about tophi gout, information was slim pickings.
Tophi gout in 2004
By the time I was 18 in the year 2004, I had small tophi deposits on my knuckles. I thought it was weird, but the word tophi never entered my mind. Here’s a major tip; never pop tophi deposits on your own without a doctor. I never knew that tophi develop over years and years.
Come 2006 and my parents and I moved from Modesto California to Stockton California. I was finally able to see an actual rheumatologist. The doctor was baffled at the fact that no other doctor tried to treat my gout aggressively. The problem was that there was no rheumatologist that treated teenagers between 2000 to 2004. The closest rheumatologist that would handle a teenager’s case was based in Oakland California, that was an hour plus drive.
Tophi gout in 2006
In 2006, I showed my new rheumatologist a small bump that was developing in my left wrist. She had an idea of what it could be, but she wanted to keep an eye on it. After a year, the small bump turned into a golf ball sized lump. She requested surgery and before I went in, she was brutally honest with me. It could either be a benign cyst or it could be malignant. She never mentioned tophi.
The surgery was only supposed to last an hour but ended up lasting four. It was indeed a tophi deposit. The surgeon had to scrape into my tendon to get it out. Prior to the surgery my left hand had this huge lump in it and my fingers were curled in. I could not straighten out my hand at all. The rheumatologist gave me a shot in the area to relieve the pain, but that was only temporary.
Needless to say, after that experience in 2007 I became an expert about tophi. The years following my surgery were not kind on my body. I developed tophi in my knees, wrists, knuckles, elbows, ears and on my lower legs. Many of them I have popped on my own and unfortunately almost all of them either had small or big infections. I do not recommend popping your tophi without your rheumatologist being in the room.
I have more information on how I was diagnosed with gout at an early age in this article I wrote: Warning About Pediatric Gout – Do Better Medical Field – thefamousjacob.com
What is tophi gout?
So, if you got this far you might want to know exactly what tophi is. To put it bluntly, it’s uric acid that has clumped together. Some say that it looks like rocks under your skin, and I would have to agree.
Tophi can be soft, and some tophi can be hard. Doctors and researchers have found that tophi just don’t show up day one of having your first gout attack. Tophi usually develops after one year or more after having uncontrolled gout attacks. That is why it is highly important to find a good rheumatologist who will be extra thorough with you in your gout journey.
Did you know that tophi can also in your back, top of your feet and even in your organs? There was an interesting article I found that talked about gout attacks in your back. The researchers studied a group of men in China and found that there were tophi deposits in their spinal cord and some various organs. If you would like to check it out, here’s the link and beware, they have pictures that might not be too kind on the eyes. Spinal gout: A review with case illustration – PMC (nih.gov)
Medicine used for tophi gout
If you look up how to dissolve tophi, you will get a myriad of different responses. You might find homeopathic ways that mentions a crazy named root from Africa or Asia that may cost you an arm and a leg to pay for it. Another is cherries or lemon juice. If you go to the pill route, most will say Allopurinol, but if you already have uncontrolled gout then it might not be that effective in reducing tophi. Allopurinol is extremely effective in blocking the overproduction of uric acid and expelling it through urination though.
There is a drug called Krystexxa that is an IV infusion which is known to dissolve tophi deposits. The cost is very expensive, but most doctors and nurses will work with you to find the best way to pay for it, either through insurance or through the company who makes Krystexxa itself. There is one other drug similar to Krystexxa, but it’s fairly new.
There is a last-ditch option and that is by surgically removing a tophi deposit. Most surgeons and rheumatologist would not recommend this only if the tophi deposit has limited your mobility. The chance of infection is incredibly high, and it can be expensive.
Tips for your tophi gout
Before I leave you, let me give you some much needed tips about tophi.
Tip 1. Do not think that a tophi deposit is just a tophi deposit. Go to your regular doctor and your rheumatologist and let them know of this new bump you found. Last thing you want to do is assume it’s a tophi deposit, but it could be something more sinister.
Tip 2. Get yourself a rheumatologist that will go above and beyond for you. Once a month lab test orders to make sure your uric acid levels are where they should be. The doctor might upgrade or downgrade your medication. If your rheumatologist is reluctant to give you a steroid shot during a long gout attack, find a new one.
Tip 3. Work on improving your liver and kidneys. Without going into too much details, your liver is your first organ that will fight for you when it comes to purines turning into uric acid. The kidneys will break down those purines and uric acid even further before filtering everything out through urination. If you have a fatty liver, work on clearing that up. Refer back to tip 2 and find a doctor that will be aggressive on helping you out with your liver and kidneys.
Tip 4. Do not pop the tophi deposits. Go to your doctors and whatever they recommend, you follow. I have a busted up left knee because I thought I could pop two large tophi deposits and there would be no infections. I was wrong. Seek professional help before popping a tophi deposit.
Tip 5. Don’t let tophi ruin your relationship with your body. Good partners do not care if you have a tophi deposit. Do not let tophi stop you from being visible in the world and finding a partner who will love you like crazy. I get it, feeling your arm that may be full of bumps from your tophi may not be sexy, but your partner probably doesn’t care or even notice. You can be your worst enemy and don’t give tophi that power!
Tip 6. Try very hard to seek out Krystexxa or a drug similar that will turn the tophi into a water-soluble solution. Finding a doctor that can actually prescribe this might be tricky. Not all doctors’ offices have an attached IV station. If a doctor refuses to even look into Krystexxa and you have one or more tophi deposits, leave them and find a new doctor. Trust me.
If you happen to have any questions, please let me know by filling out the comment section below. Make sure to bookmark my website so you can check in with any new information about gout. Here you will find information about gout news, gout health in general and my overall experience with gout, especially tophi gout.
You can check out a really good YouTube video that I made here:
WHAT IS TOPHI GOUT — MY EXPERIENCE & HOW TO TREAT IT (youtube.com)
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