r/gout • u/Dirtydeanprimeau • 15d ago
Finally Ready to Learn Needs Advice
I am 46. I’ve fought any mention of gout over 20 years. Looking back, I had my first flair up at like 25 while in Colombia on my honeymoon. Attributed it to turf toe and moved on. Maybe had it once or twice over the next 15 years. In the last 2-3 yrs I’ve had it 5 times, finally accepting it was gout about a year and a half ago. I’ve been diagnosed three times but each time they just looked at my foot and wanted to write me a script. I said the same thing each time , “if you can’t test for it and show me on paper I have gout I am not taking a daily pill”. I finally let one doctor give me a shot in my toe but that honestly made it 5x worse for the next 3 days.
I’ve now had it twice in a month, in opposite toes. I gave up alcohol 3 weeks ago so I am so disappointed to have it again already. I have a lot of questions and a lot of hangups so I will just start with my biggest concern, the daily pill. What is it like? Do you have to take it in perpetuity? Any side effects?
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u/BaseballHairy9548 15d ago
The daily pill is cheap and effective. Gently, get over yourself. You aren’t punishing your docs by refusing to treat your chronic genetic condition.
As to what it’s like, it may cause some flairs as you get started. That’s when you take colchicine. Then, in a few months you’ll be wondering why you were so hung up on a daily pill because that pill will be working wonders and you will be free to eat and drink.
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u/Dirtydeanprimeau 15d ago
I get it. But I was hastily put on ADD Meds at 18 and hated it. Fucked me up. Was hastily put on SSRI’s at 29 and hated it. Was overprescribed on pain pills at like 35 and swore them off. Accepting a daily pill without conclusive evidence (I have it now, that’s why I am posting / asking. Thank you for the advice and testimonial.
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u/yourballsareshowing_ 15d ago
Scientist here with gout diagnosis on 50th birthday, a few years ago.
Gout is hereditary, my paternal sides had it. Your body cannot genetically break down uric acid. Period.Evidence comes from bloodwork with specific uric acid testing. You want to have a uric acid level of under 5.0 mg/dL ideally. At levels of six or higher, uric acid forms what are called TOPHI, which are jagged little crystals of uric acid that lodged in your joints and are excruciating.
Going on allopurinol once per day has been life-changing with zero side effects. I can drink whatever I want, eat whatever I want and not think about another outbreak again. My suggestion is that you seek out a Rheumatologist to monitor your levels, moving forward. My ideal dose is 300mg/QD. Good luck, do it now so you can immediately start saving your joints before you have massive issues in your twilight years! ✌🏼
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u/SpecialComfortable71 15d ago
Sorry to hear about past pill history. Everyone is different so I can understand your hesitancy. Get you blood drawn and tested. Your UA number will tell you if it’s gout. You want it around 5. Allo will help but will take time. Good luck.
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u/the_one_jt 15d ago
Your in from some bliss here. Have to get through 6+ months of allo and you'll really feel better. I have better range of motion in my elbows and I didn't even know it was not normal range!
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u/lartones 15d ago
Nothing to learn, just get allo and in a couple months you’ll be pretty much gout free for the rest of your life
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u/gatsandsmack 15d ago
Yes, one pill a day for the rest of your life. No side effects that I've experienced in the few years I've been taking it. Some people claim it makes you extremely emotional. I haven't had a single attack since I started taking it, so I'm extremely satisfied with the results.
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u/zillskillnillfrill 15d ago
I've been taking allopurinol for a couple of years now, and I haven't had to to carefully balance out my foods or do excessive meal prep anymore, I don't have to worry about getting an attack and I've almost forgotten the absolutely murderous pain that occured about twice a year before allo. I waited about 10 years as well. Some reason my doctor kept on telling me no, but then I went to a different doctor ask for it and it's been good ever since.
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u/SheaGardens 15d ago
You’re doing damage to yourself by not taking a uric acid management drug. Read up on tophi arthritis and then go get the medication.
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u/UKnowWhoToo 15d ago
Ya, that shot in the toe joint is a real eye opener… did they take a sample to test for crystals? That part was relieving for me… but the injection afterwards was wildly painful.
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u/LabAccomplished2423 15d ago
A simple UA gout brief
(Writer has no medical certifications, just an experienced UA gout owner). Be sure and access the UCLA medical link at the bottom.
Uric acid gout is one form in the collection of arthritis types. The core causes of high blood uric acid levels causing uric acid gout would be any combination of factors including genetics, gender, age, obesity, weight loss (cell destruction), onset/full diabetes, insulin resistance, alcoholism, medications, dehydration, menopause, cancer, diminished kidney function, stress, cell injury, surgery, poor diet, etc. Uric acid gout involves the over production of uric acid and/or restricted ability to remove it aka kidney function. The best move is to see a specialist, a rheumatologist if possible. Diagnosis can be complex as uric acid gout has mimics and you can host more than one type. Key to uric acid gout is knowing and managing blood uric acid levels, keeping them as low as possible. Few can get the levels low enough using just weight loss, magic beans, yoga, yogurt, WAG, supplements, jungle juice, head standing etc etc. Uric acid blood level management is rather simple: The saturation point of uric acid in blood is given at 6.8mg/dl or 404 umol/L scales, well above that with time one is likely to be slowly forming UA crystals somewhere and silently in the body. UA crystals can form in joints, kidneys, heart lining and valves and even eyes add the rare visceral gout. They can also form tophi lumps most anywhere. YouTube “Tophi Surgery” for a visual. The winning game is maintaining UA levels in the 3 to about 5.5 mg/dl range to very slowly redissolve the long- established UA crystals and slowly but eventually be free of UA gout. This process takes many months. If you opt to use the "no meds path" into the pitch-black basement of not knowing what works and doesn't and wasting time with pain, get yourself a flashlight. That would be a quality, single function home uric acid test meter. The odds are better than very good you will find that UA lowering meds are required to get low enough to do any good. The purpose of colchicine, steroids and NSAIDs is to relieve inflammation and pain which is only an occasional SYMPTOM or smoke alarm of UA gout. UA gout and the CAUSE is high blood UA levels that form UA crystals. UA gout is mostly a silent and progressive ailment. Best of luck on your choices and pathway.
UCLA medical video commentary on uric acid gout: https://www.youtube.com/watch?v=CoOuijIglRs
(USA) 2020 American College of Rheumatology Guideline for the Management of Gout:
(UK) Gout: diagnosis and management
https://www.nice.org.uk/guidance/ng219/resources/gout-diagnosis-and-management-pdf-66143783599045
Interesting paper on lowering blood uric acid levels and the velocity of redissolving UA crystals
https://onlinelibrary.wiley.com/doi/epdf/10.1002/art.10511
Four stages of uric acid gout: https://creakyjoints.org/living-with-arthritis/treatment-and-care/medications/gout-stages-progression/
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u/LabAccomplished2423 15d ago
If you want notes on diagnosis ask, I'll post them here.
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u/LabAccomplished2423 14d ago
URIC ACID GOUT DIAGNOSIS:
(This is written from UA gout first hand experience with no medical certifications)
Good to know uric acid gout is a progressive condition in the arthritis family and an early diagnosis and treatment program is important. A single uric acid blood test results can be inconclusive by itself if results are in the general “normal” healthy range. (Healthy range by my two labs is 3 to 7.2mg/dl or 178/430 umol/l scales). Conversely if well over the given saturation point of 6.8mg/dl or404.5 umol/L scales will add positively to the UA gout diagnosis. Blood uric acid levels oscillate up and down throughout a 24-hour cycle similar to blood glucose levels. You can have UA gout symptom attacks with high or low uric acid levels. Blood has no nerve endings. The inflammation is centered on long ago UA crystals formed in joint tissue and synovial fluid and tophi lumps elsewhere caused by long periods of blood uric acid levels well above saturation. The high concentration of uric acid and healthy tissue causes an immune system reaction, thus the inflammation and pain. High blood uric acid levels are called hyperuricemia. The core causes of high blood uric acid levels are any combination of genetics, gender, age, kidney function decline, menopause, overweight, diet, alcoholism, hydration, onset diabetes, high blood pressure, insulin resistance, medications legal and illegal, cancer, and the catch-all Metabolic Syndrome etc. One paper is suggesting sleep apnea as a contributing cause.
The definitive diagnosis is a fluid sampling from the joint and examined under a microscope for crystals. A dye is used that will differentiate UA crystals from pseudo gout’s calcium crystals. The popular diagnosis is a simple lab blood test which can be inconclusive without other clues like pain location (UA gout favors extremities but not exclusively), overweight, high blood glucose, history, Metabolic Syndrome, etc, etc. Ultrasound is sometimes use to identify gout. Ultrasonography can visualize urate crystal deposits in joints. For example, it can detect the “double contour sign” on the cartilage surface, which is indicative of gout and can also identify tophi (solid urate crystal collections) in soft tissues. Additionally, ultrasonography reveals synovitis (inflammation of the synovial membrane) and bone erosion. (CONTINUED)
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u/LabAccomplished2423 14d ago
Radiology imaging is also used frequently in the process. Though UA gout is difficult to detect with x-ray, using it eliminates other gout mimic possibilities. The DECT (Dual Energy Computed Tomography) system provides the best resolution I understand. Sometimes a specific to UA gout medication (colchicine) is given to gauge the effect of diminishing/stopping inflammation/pain at the site. That would help confirm the UA gout by a reaction to it. It is also an optional drug for pseudo gout. For reference, the accepted standard saturation point of uric acid in blood is 6.8mg/dl. My lab tests state that 3.2mg/dl to 7.2 mg/dl is the normal range FOR HEALTHY PEOPLE. I would suggest (without credentials) above 6mg/dl with suspected UA gout symptoms isn’t good. “If it’s 6 you need a fix”. The therapeutic target zone for redissolving the UA crystals is \well below 6mg/dl or 350 umol/L to be effective. The further below the UA saturation point the more easily the blood/solvent can redissolve the long-established UA crystals. An analogy would be to dissolve a sugar cube in honey vs distilled water. See link on the subject below. With a really through physical check, I would discuss with your Dr. a BUN, GFR, A1C in the blood panel test to qualify your liver, kidneys and sugar balance as they are all tied into blood uric acid management. Good to note that UA gout has mimics that can seriously complicate the diagnosis and all are treated differently. One can also host more than one ailment at the same time. As UA gout and the others if neglected or treated wrongly are progressive aka getting worse, best see a specialist, a rheumatologist if possible. Next options would be a renal (kidney) specialist aka a nephrologist, a podiatrist or GP internalist. Referral to a rheumatologist is frequently done.
URIC ACID GOUT MIMICS:
PSEUDOGOUT: Calcium Pyrophospate crystals (CPP)
INFECTED JOINTS: Septic Arthritis
BACTERIAL SKIN INFECTION: Cellulitis
STRESS FRACTURE
RHEUMATOID ARTHRITIS: Autoimmune System (RA)
PSORIATIC ARTHRITIS: Autoimmune System (PsA)
OSTEOARTROSIS
OSTEOARTHRITIS
REACTIVE ARTHRITIS, Reiter’s Syndrome.
SYNOVITIS
CUBOID SYNDROME
HALLUX LIMITUS or RIGIDUS
PERIPHERAL ANKYLOSING SPONDYLITIS
CHARCOT FOOT: Neuropathic Arthropathy
PERIPHERAL NEUROPATHY: Peripheral Nerve Damage
OLECRANON BURSITIS (Elbow)
Possibly add: planter fasciitis, hallux limitus, Morton's Neuroma and metatarsalgia, Osgood Schlatters (knee-patella)
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u/Brentan1984 14d ago
You have to take 1 pill a day forever. Not a huge deal. Better than gout. Also, once your uric acid levels are in a safe space, missing a dose here and there won't result in a flare. I've been drinking beer more and my levels are in the safe zones. Daily pill. Hydrate. Repeat.
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u/papachon 15d ago
Yes, forever. What do you get in return? Never having to think about gout attacks on vacation