Just Started Allopurinol, Unclear on Follow-Ups

Stopping Gout Together Forums Help My Gout! The Gout Forum Just Started Allopurinol, Unclear on Follow-Ups

This topic contains 29 replies, has 3 voices, and was last updated by  nobody 2 days, 22 hours ago.

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  • #8800

    [email protected]
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    Ŧallars: Ŧ 22.42


    Hi all, new to the forum. I had my first attack in my big toe about six years ago (age 42-43), had an attack per year the next three years (managed with Colchicine), then nothing for two years. I all but forgot about my issue for that two years. Last year (January 2018, approaching age 48), I made some non-gout related choices to exercise, lose weight (by cutting carbs), and improve my overall health. After losing 25 lbs in four months I had a bad gout attack, first in two years, obviously related to an increase in protein and loss of weight.

    Since the attack I’ve been flaring almost weekly, probably stuck in that “Gout Hell” phase I’ve seen described here. When I had my bloodwork done last May my UA was 8.3 mg/dL. From that point on I cut meat, fish, and alcohol consumption by about 75%, I’m very disciplined with my diet, I eat high quality natural foods, good carbs, plenty of dairy for protein, and lots of veggies, and I hydrate well consuming at least two liters of water daily. I have continued to drop weight as well and I’m now down about 40 lbs, low-impact exercising regularly, and maintaining well. I had bloodwork done again in January 2019 and my UA came in at 8.0 mg/dL, so big dietary changes only resulted in a small decrease.

    It was a rough year, managed with Colchicine for flares, so I decided to start on Allopurinol after much internal debate. My General Practitioner gave me prescription for 100 mg daily, 90 pills to start, set for refills every three months. I’ve been on it for two weeks now with no noticeable side effects other than maybe some minor drowsiness. My questions are in regard to dosage and follow-ups: My GP was pretty unclear about whether to increase dosage after a period of time and how long to wait before having my blood tested again. I know 100 mg is considered to be a minimum dosage, and call me impatient at the prospect of waiting three months to track progress.

    What is the recommended time to give the drug an opportunity to have an effect before re-checking SUA levels? Also, are the effects of Allopurinol cumulative over time, or do SUA levels have a tendency to flatline with a particular dosage? And if so, is there a typical timeline for how long it takes to know it’s not going decrease UA further at a particular dosage?

    Thank you in advance for any input, I’m looking forward to having a place to help track progress!

  • #8801

    [email protected]
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    Ŧallars: Ŧ 22.42

    I’d also like to add that the flares over the past year have moved to other joints, my second toe in the same (right) foot and my right thumb joint.

    I’ve also been taking 1000 mg Vitamin C daily as it’s been shown to decrease SUA by an average of 10%. Helpful possibly, but not enough to lower levels significantly for someone with typical gout numbers.

  • #8802

    nobody
    Participant
    Ŧallars: Ŧ 530.53

    Getting your blood tested every 2-3 weeks at first and then every 6-8 weeks sounds like a reasonable schedule when you’re experimenting with allopurinol dosage. Guidelines will say stuff like “every few weeks”. How often really depends on individual factors but waiting 3 months for your first blood test after initiating allopurinol is clearly irresponsible.
    For one thing, you need to get your liver and kidney function tested. It doesn’t take 3 months to damage your liver and it’s not painful. You might not notice anything until it’s too late but a blood test should show anomalous values if your liver didn’t take well to allopurinol.
    You can in principle start with less than 100mg actually. Allo pills are often designed to be cut in half. I’m obviously not saying you should lower your dose, only commenting on the “minimum dosage”.

    It’s not recommended for a gout sufferer to lose weight so fast. Anecdotally, people often seem to get gout on low-carb diets.
    There’s way too much noise in test results to draw any conclusions about the effects of diet based on only two tests.
    I’m not sure you had “gout hell”. Your test results were a bit high for that. Attacks can become more frequent and spread to other joints after a while anyway. That’s one of the reasons gout shouldn’t be allowed to fester several years without treatment.

  • #8803

    [email protected]
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    Ŧallars: Ŧ 22.42

    Thank you for your response! I’m going to call my doctors office to follow up very soon. I’m not even sure if the doctor meant to wait three months, it’s more that I was concerned there was no follow-up plan in place as of yet. I’m also not convinced my GP is any kind of gout expert, so I wanted some opinions from people who have been through this.

    I have come to know now that the low carb thing is bad for a gout sufferer, it had just been so long since I had any symptom or problem that I pretty much forgot, and of course wham. I lost the initial 25 lbs in the first four-five months of last year, and 15 more in the eight months since. Pretty much at my target weight now, maybe another couple of pounds by summer just for good measure. The motivation to lose the weight was because I had hit an all time high over 2017, 10-20 lbs over my adult average, I’ve never been anywhere near morbidly obese but didn’t want to approach 50 years old being that heavy. Overall, still very glad I have taken the weight off.

    I’d like to add, just to keep my history clear for informational purposes, that I am in excellent health otherwise. Blood sugar, liver and kidney function, etc are all spot on, prior to starting the Allopurinol anyway. Gout aside I feel fantastic, and I’m in better shape than I’ve been in years.

    And I guess I’m not exactly clear on the definition of “Gout Hell”, I just feel like I was stuck at a volatile UA level or saturation point of some sort where I was flaring pretty much weekly, not full blown excruciating or debilitating attacks thankfully, but uncomfortable and worrisome nonetheless. Also thankfully, I respond to Colchicine well, and I only take it in response to a flare or attack, not regularly as a preventative.

    I’m also still looking for some thoughts on how long a certain dosage of Allopurinol might take to establish a new baseline SUA and/or how long to wait to decide if dosage needs to be increased.

  • #8804

    nobody
    Participant
    Ŧallars: Ŧ 530.53

    Like I said, you should re-evaluate the dose “every few weeks” until you found a dose that works. Sorry if that’s vague but it depends. If your doctor doesn’t have a reason to do it differently and since you seem healthy, maybe make the interval a month? I wouldn’t wait so long for the very first blood test and dose upgrade after starting allopurinol however.

    Getting frequent and less severe attacks (you still get the bad ones, just not as frequently as the minor ones) seems to be a common evolution of gout separate from the “gout hell” phenomenon which can be worse than what you described. Your test results don’t rule out either explanation (with so few tests, it’s hard to tell) but if I had to guess, I’d say this wasn’t “gout hell”.

  • #8805

    [email protected]
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    Ŧallars: Ŧ 22.42

    I made a follow-up appointment with my doctor right at the four week mark to schedule the bloodwork, which I will get done within a couple of days of the appointment, so I should have my first results by five weeks on the medication. Four weeks seems to be my doctors preference, and at this point works for available appointments compared to my work schedule anyway.

    Fingers crossed for positive results, thanks again for your help!

    Another question if I may: Is there any precedent for using higher doses to really lower UA and efficiently dissolve crystals more rapidly, and then lower to a maintenance dosage for long term prevention?

  • #8806

    nobody
    Participant
    Ŧallars: Ŧ 530.53

    Higher doses until symptoms go away is in the guidelines, except only for severe cases of gout. Assuming there is no sign of your system having any trouble with allopurinol, I think you’ve allowed it to fester long enough so that we might put you on the “higher dose” track regardless of severity even though there is no hard evidence for it making a difference in a case such as yours.
    The official “higher dose” SUA target is 5 but it’s fine if you make it drop a bit lower. You don’t want it much lower for years on end but for the time being lower than 5 is probably better than higher until you are symptom-free for at least 6 months. The real issue isn’t a concern about making your SUA drop too low but rather that a higher dose than necessary might trigger a reaction to allopurinol. It’s a potentially dangerous drug so I would err on the side of caution unless your gout symptoms are very serious or debilitating. See how you fare on a reasonable dose before considering very high doses.

    Something else: I remember one doctor recommending their patient to go straight from 100mg to 300mg because those are the pill sizes. This is stupid and reckless. Increase by 100mg steps at most. It would actually be safer to increase your dose by 50mg every 2-3 weeks (no need for a blood test each time if you only increase the dose by 50mg steps). The pill sizes are designed so that you can get most reasonable doses with a simple combination (for instance taking a 300mg pill with a 100mg gives you a 400mg dose).

  • #8807

    [email protected]
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    Ŧallars: Ŧ 22.42

    Your advice and wisdom are truly appreciated. I already had it my head that if needed I’d only go up 50mg if my levels don’t come down enough on 100mg, at least until I have a month to see how that worked. I’m secretly hoping 100mg will do the trick, but I’m if not I’m really hoping it’ll be less than 300mg. I hate taking medication of any sort, and I really want to minimize the stress on my liver and kidneys.

    Just to be clear, once levels have dropped and crystals have had time to dissolve, I’m looking to stay anywhere between 5-6 mg/dL? Is anything under 6 considered to be too low for crystal formation/accumulation?

  • #8808

    nobody
    Participant
    Ŧallars: Ŧ 530.53

    The maintenance target is 6. Now you might get away with a bit more. There are individual variations, environmental issues and so forth. In theory, crystals shouldn’t form under 7 but we need to allow for joints colder than regular body temperature as well daily/seasonal/random variations…

    I doubt less than 200mg would be enough in your case. But the blood tests will tell…
    Just don’t jump to conclusions on the basis of a single test. These need to be repeated and what matters most is the average.

  • #8811

    [email protected]
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    Ŧallars: Ŧ 22.42

    Fine tuning my questions and curiosity a bit… They say diet only accounts for 1/3 of SUA, they rest is produced by the body. I’ve been pretty good with my diet, not saintly, but good overall. If I am gauging my Allopurinol dosage under a purine conscious diet, how should one take wanting to get closer to a normal diet into account eventually?

    I do understand that I should never overdo it or go totally off the rails with my purine intake, but I have read that many people say they’ve returned to a normal lifestyle after getting their UA under control with Allopurinol. What’s the perception on diet in relation to dosage around here?

  • #8812

    nobody
    Participant
    Ŧallars: Ŧ 530.53

    Perceptions are all over the place. Really, I wouldn’t say most people are trying to be perceptive. Instead, they’re trying to justify the diet they want to have by any means necessary. And most people have very little dietary knowledge, including doctors. The scientific research is also scant and the published data inadequate. Diet is effectively a religious matter.
    I’ve seen enough people killing themselves slowly with alcohol, meat and sugar that I’m kind of past caring. I remember a long-dead relative’s notebook about how he was poisoning himself better than his face because simply quitting the stuff was unconceivable.
    So yeah, I’ve known people quite a few people who had (or are still having) a “normal” liefstyle on allopurinol. Certainly most people can control their UA while indulging. It simply takes a bit more allopurinol than would otherwise be necessary. The issue is, how does your liver like it? Side effects are more complicated than just the liver of course but be mindful that combining allopurinol and alcohol is going to have implications beyond UA over the years.

  • #8813

    [email protected]
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    Ŧallars: Ŧ 22.42

    Hm. I do eat very healthy, not much of a sweets eater, I don’t drink sweetened beverages at all, and I’m by no means a problem drinker. I enjoy a few drinks a week, and I’d like to not fear eating meat for dinner a couple of times a week. I’ve long since all but eradicated processed or artificial foods and refined sugars from my life, autonomous of my gout issue. Now that I’m taking my gout treatment more seriously, I’m also hyperaware of my meat and beer related purine intake. I was just curious how strict one needs to be when treating the problem with medication vs not.

    I know nutritional science is a lot of speculation, but I do consider myself to be more savvy than the average person on the subject. You could say I’m hyperaware of my nutritional intake in general as it’s a big part of what I do for a living. I guess I was hoping for a more scientific correlation between Allopurinol use and dietary SUA, but it’s likely that kind of information doesn’t exist. Wishful thinking I suppose.

  • #8814

    nobody
    Participant
    Ŧallars: Ŧ 530.53

    Yeah, I’m not aware of any real research on the issue. It doesn’t seem like a very productive research topic really since allopurinol can cure almost every gout patient who can tolerate it and its dosage has very little scientific basis to begin with.
    Purines aren’t a big factor compared to the uncertainty regarding how low you should try to get your UA. Alcohol as such (not the purines in alcoholic drinks) is more of a problem in my opinion, as are nutritional deficiencies which can, together with allopurinol and excessive purine intake, contribute to kidney problems in the long run.

    You can be much, much less strict with your diet after successful treatment. Again, the side effects of the drugs are the main concern, not gout attacks. In the initial phase of tratment, while you are still experiencing gout symptoms, I would recommend some caution but even at that stage, there’s little point in being very strict.
    As long as you tolerate allopurinol well, you can eat meat without fearing gout. No question. Heart disease, kidney disease and so forth are much more serious concerns. Meat is only a serious problem for gout if you aren’t getting treatment or if you can’t moderate your consumption.

    My turn to ask you a question since you care about your purine intake: where do you get informtion about the purines contained in your beer?
    I’m not trying to justify consuming beer since I haven’t had a beer in decades but there’s bound to be great differences between beers and I strongly suspect beer is generally nowhere as bad as it’s made out to be. I have some idea of how dangerous beer yeast is but I don’t think I’ve ever seen useful data about actual beer.

  • #8815

    [email protected]
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    Ŧallars: Ŧ 22.42

    Taking this all with a grain of salt, alcohol is known to inhibit excretion of uric acid, making it a generally unwise choice for a gout sufferer. Beer can be a double whammy because it also contains varying levels of purines. Lower malt beers, such as Pilsners, have significantly less purines and are generally lower in alcohol than ale styles. Numerically, any beer doesn’t seem that bad under analysis, but purines are measured by 100 g servings, making a pint of beer (especially ale style beers which are considered a “medium purine food” by 100 g serving) five “purine servings” in one glass, add up quickly.

    Some opinions also believe that Lager yeast (cold, bottom fermenting) has substantially less purines than Ale Yeast (warm, top fermenting). Lagers also tend to be lower in alcohol, 4-5% on average, where ales can go as high as 15% naturally, although 5-8% is a good average. Every beer variety in the world is either a Lager or an Ale, depending on the yeast strain. And again, some opinions even look at filtration because filtered beers contain less of the yeast lees (dead yeast particles) which physically contain more purines. Finding any information online is like finding a needle in a haystack, and of course every beer is different, and I’ve yet to find definitive purine information for specific beers.

    I’m a huge fan of the American Craft IPAs, strong, unfiltered Ales which are the only thing I can say for certain are triggers for flares. I’ve been able to enjoy a few Pilsners with no discernible effects on flares at all.

    Wine has virtually no purines, and is mostly known to be problematic only in relation to excretion, and of course wine is most commonly paired with food, and we all know the old saying, “red wine with red meat, white wine with fish…”. So wine itself isn’t a purine problem at all, but it makes the UA derived from that steak or shrimp you ate with it that much harder to pass. In theory, some wine consumed on an otherwise low purine diet shouldn’t be problematic in terms of dietary SUA.

    Again, all of this “in theory”.

  • #8816

    nobody
    Participant
    Ŧallars: Ŧ 530.53

    It’s not clear what information you have about purines or where it comes from but it seems you’re using some kind of high/medium purine list. These are notoriously bad.
    Beyond the obvious (even if the lists were based on good data, you’ve got to draw a line somewhere to make such lists while your body doesn’t care about the line between “high” and “medium”), purines too are merely a category and abstractions do not increase uric acid. Particular purines increase uric acid and different foods contain varying mixes of purines. So useful data about beer (or anything else) would tell you how much (a number, not “high” or some other word) hypoxanthine, xanthine and adenine there is in your beer.
    This is why beer filtration matters. Dead yeast particles are a problem not so much because of the gross amount of purines but because of the specific purines they contain. Generally, non-plant cells are a problem.

    Wine consumed with a low purine diet does increase UA. Whatever you eat, you’re producing uric acid. As you noted above, dietary purines are significant but are typically only a small part of the problem.
    Traditionally, gout sufferers were warned against white wine in particular which (sometimes? again, I’ve never seen useful data about this) contains diuretic compounds other than alcohol. You’d be surprised where you can find diuretic compounds (some Turkish pastries for instance).

  • #8817

    [email protected]
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    Ŧallars: Ŧ 22.42

    The couple of fairly relevant looking purine lists I have looked at do list by how much of each purine various foods contain and/or a number relative to the amount of uric acid the food produces. Not that I know exactly what the numbers mean, I only assumed these were good for watching for an overall intake balance or putting foods to scale. Case in point, common mammal muscle meats (beef, chicken, pork) seem to be pretty close in purine content, yet many gout diet guidelines espouse lean meats such as chicken as better options. Meanwhile, a meat like pork belly which is very high fat actually has less purines than lean chicken breast.

    I’ve also read that some people obsess over higher purine vegetables and legumes (spinach, asparagus, lentils, etc) and have claimed them to cause attacks, while other sources say to basically discount any plant derived purine intake. Common sense tells me one should probably worry about plant based purines in conjunction with the bigger offending animal based ones and/or alcohol intake. Cumulative effect would make sense to me.

    And just for the record, I assumed that clinical studies that have taken the time to analyze purine contents of foods for hyperuricemia/gout related studies have done the legwork of pre-distinguishing the bad purines for us. Of course we all know the old saying about the word “ass-u-me”.

    So if tracking purine content/intake isn’t a wise option, what guidelines would you suggest?

    I also just saw in another post you suggested “eating foods known to lower uric acid”. I’ve only seen clinical evidence for one thing consistently lowering uric acid in trials, Vitamin C. And that is only by a percentage too low to be of any real relief to someone with hyperuricemia.

  • #8818

    nobody
    Participant
    Ŧallars: Ŧ 530.53

    This stuff is quite complicated and there’s apparently not much motivation to research it. Basically, there are drugs that fix the problem so why bother?
    I’m sorry to say that the studies actually looking at purines numerically (which isn’t the norm) rarely differentiate properly between purines. Outside of lab-type reasearch I’ve never seen a dietary study that actually does this. Which isn’t to say that there are no such studies. I didn’t look very hard and I’m not an expert.
    I’ve seen fairly reasonable review articles, very focused clinical-type studies (here’s how these new food products or this specific diet we designed affects uric acid) as well as epidemiological-type studies reliant on self-reporting but nothing clinical about the broader dietary issues. Even the basic studies I found looking at fast human response to artifical intake of various compounds are quite old.

    It does make sense to track purines but on the one hand most lists aren’t very useful and on the other there are lots of non-purine factors so it doesn’t make sense to focus too much on purines.
    In the absence of adequate data, the basic rules I would propose for purines (even though they aren’t fully reliable) are:
    -limit consumption of the bodies of organisms other than land plants, anything made from such as well as mystery foods (if you aren’t using an effective allopurinol dose or equivalent, make that drastically limit)
    -try to look up the specific purine content (hypoxanthine and so forth) of the land plants you regularly eat in large amounts and look at alternatives in case it looks like they might be a problem
    -if you’re eating foods other than land plants, also take a look at some of the very worst foods such as sardines and avoid them as much as possible

    You are correct that chicken isn’t better than red meat in terms of purines. Indeed, if you discount organ meat, chicken is generally worse. But again, there are other concerns than purines such as cholesterol, hormones, allergenic compounds and heme iron.
    Maybe this is good time to stress purines would normally not trigger gout attacks (unless perhaps you grossly induldge). They are a major factor in causing gout in the long run but triggers are something else. This distinction is poorly understood, including by doctors. Diurectics, certain fats and allergenics for instance might trigger attacks.
    This is why some people might get attacks after eating fatty mammal meat but not chicken. From this they might incorrectly conclude that chicken doesn’t cause gout.
    To be clear, after successful treatment triggers won’t do anything.

    As to foods known to lower uric acid, dairy is the best known case. There are actually “natural” UA-lowering pills containing dairy extract for people who don’t want to consume actual dairy. For the same reasons chicken might be recommended over red meat, guidelines recommend consuming lots of low-fat dairy such as skimmed milk and yogurt made from such as opposed to cheese.
    There are a few uric acid-lowering compounds occuring naturally in other foods (more so in herbs). This is why cherries are traditionally recommended to gout sufferers for instance. I think many berries have the same stuff. As you say, vitamin C also has an effect so I guess kiwi fruits could be said to be an UA-lowering food.
    In some cases at least, alkalyzing urine also lowers uric acid. So one might argue many vegetables and even some fruits lower uric acid on that account.

  • #8819

    [email protected]
    Participant
    Ŧallars: Ŧ 22.42

    All great information! Thank you.

    It’s funny that cherries, maybe the oldest and definitely the most mentioned “gout remedy”, have virtually no clinical evidence to back them up. In fact the best information on cherries and gout I’ve seen surmises that they’re most useful as an anti-inflammatory from their anthocyanin content.

    I was also under the impression dairy was recommended more so for its use as a low purine protein replacement, not so much because it “lowers uric acid”. Helping to lower uric acid through substitution, not inherently. I think the low fat dairy recommendation comes from the summary assumption that most gout sufferers are generally, overweight, have high cholesterol, or have other conditions such as diabetes. If these aren’t the case and weight/other health factors aren’t an issue, I wouldn’t concern myself with “low fat”.

    Talking about fat, fats were much maligned during the second half of the Twentieth Century. People started getting fatter in conjunction with consuming mass produced, processed, preserved, and heavily sugar laden foods. Refined sugars were the culprit, but fat and its additional 5 calories per gram, got the blame. As someone who is in good shape and eats an excellent diet of natural, whole and nutritionally dense foods (now with my hyperuricemia taken into account too), I embrace good quality fats and incorporate them properly into my diet rather than avoiding them.

    A bit of nutritional advice to anyone who cares to listen: Avoid processed and modified fats as much as possible. Soya bean oil (which EVERYTHING preprepared is made with!), canola oil, “vegetable” and corn oils, and butter substitutes such as margarine and other substitute spreads, all terrible. These fats are so heavily processed with heat and chemicals that the body fails to recognize them as the vital macronutrient they should be, and instead treats them like toxins. The body is confused by them, and anything the body doesn’t know what to do with gets stored as, you guessed it… Fat! Body fat. Much the same as High Fructose Corn Syrup and many preservatives, which are also in almost everything “pre-made”, they confuse the body and get stored in fat cells.

  • #8820

    nobody
    Participant
    Ŧallars: Ŧ 530.53

    Yes, dairy provides protein but extracts containing (virtually) no protein also lower uric acid. It’s one of the best-established relationships in the field along with the effect of alcohol.
    As to cherries, have you checked Jacob et al. (see the footnotes of the British guidelines)? Possibly it’s a junk paper but some expert thought it was worth referencing. I haven’t read it myself. It’s not the only one claiming an effect on uric acid anyway.

    The fat metabolism does play a role in gouty inflammation… again, it’s not a cause of gout but modulates its expression. Keith has a page or two about this on Goutpal.
    There is also as you mention the fat-related comordities of gout. Though it obviously isn’t relevant for every individual, certain fats are maligned for a reason regardless of the popularity of some truther barguments.
    On top of that, there is weak evidence suggestive of fatty diets contributing to high uric acid. Carbs other than fructose (and of course sugar) seem to give better results in studies. Anectodally, many have come to this forum saying they developped gout after going on a low-carb diet. But this may of course be due to excessive protein intake or simply purines.

  • #8824

    [email protected]
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    Ŧallars: Ŧ 22.42

    I don’t love drinking milk, never a fan, but it looks like I’ll be forcing down a glass of organic skim milk a day. Haha! Thanks for that info, there is indeed plenty out there on the subject, oddly hidden in plain sight. I usually drink a big glass of water both before bed and first thing after waking in the morning. I probably sub one of those out with the milk.

    I’m a huge proponent of natural eating. Part of the problem with modern diet in my opinion is it’s existed for only a short span of human history… Refined sugars and oils, modified starches, chemical preservatives and artificial colors and flavors. Mother Nature never intended for us to rip the sugars or fats out of plants with heat and/or chemical processing while discarding the other nutrients, fibers, and roughage included. How we treat our foods and eat them has become totally counterintuitive to millions of years of evolutionary design.

    In regards to cooking fats, I’d recommend expeller or cold pressed safflower or grapeseed oils for higher temperatures (sautéing, searing, deep or pan frying). You want “neutral oils” for higher temperatures that don’t have compounds that will burn and turn carcinogenic with high heat. “Neutral oils” are also relatively flavorless, which is good for recipes where you don’t want added distinct flavors.

    For non- or gently cooked fats I’d stick to cold pressed extra virgin olive oil and other expeller pressed nut or seed oils like avocado, coconut, sesame, walnut, peanut, etc, accounting for their distinct flavors where you choose to use them.

    Cold pressed oils are the most natural and healthiest, with minimal heating. Expeller pressed is done at a higher temperature to extract more oil, but with no chemicals and still below what’s considered to be heat levels of toxicity, not too bad. Solvent pressed are the bad ones, oils extracted at even higher temperatures and with chemicals for the highest yields, and how a vast majority of your mass produced vegetable and seed oils are done. Not good for you at all!

    I’m also all for using animal fats, health permitting (calorically they’re the same, so it really just boils down to cholesterol intake). The body is far better designed to digest animal fats, which are very natural and we’ve been eating as a race for our entire history.

  • #8826

    [email protected]
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    Ŧallars: Ŧ 22.42

    Off topic, I know… haha.

    I have my first blood test scheduled tomorrow since starting 100mg/day Allopurinol four weeks ago, trying to be prepared with as many questions/observations pending results, and much of what I see online lends itself to the thinking that you find a dose that works, and stick with it forever.

    So does anyone have any history of varying Allopurinol dosages throughout their treatment? For example: Gauging an initial dosage of 300mg, but eventually lowering to 100 or 200 as a maintenance dosage? Or bringing it down with a higher dosage and then lowering to a maintenance dosage.

    Or the other way around, finding a dosage that worked, but eventually having to increase because that dosage stopped being as effective for one reason or another over time?

    I guess I’m curious if the effects of the drug tend to improve or decrease over time. In regards to SUA numbers, is there a tendency toward a long term positive cumulative effect, or toward building up a resistance negatively.

  • #8827

    nobody
    Participant
    Ŧallars: Ŧ 530.53

    This is going to be a frustratingly slow process so there’s no point in trying to ask all the questions right now.
    The only urgent questions relate to potentially serious side effects, especially if you noticed anything strange happening to your skin, lips and so forth. If the blood test comes back with strange values, that would of course also raise urgent questions.

    Like I said, changing one’s dose is in the guidelines so it’s certainly not unheard of! In your case, the motivation for doing something a bit more complicated than usual would be the amount of time you allowed your gout to fester without treatment.
    Most doctors are terrible at treating gout so imitating common practices isn’t a very good idea.

    Initially, the effect of allopurinol often seems to increase over time but that’s probably not due to an increased effectiveness of the drug but to negative feedbacks. There are many confounding factors so you may not observe this increase.
    There are also diminishing returns (or in other words a diminishing marginal effectiveness) with increasing doses but that’s a different issue.
    Over longer periods, changes in your body’s ability to eliminate both uric acid and allopurinol metabolites will affect your SUA even if your lifestyle and diet didn’t change. It would be very difficult to tell whether there is a small change in the effectiveness of drug itself. I’m not aware of any conclusive results and the default assumption should I think be that the effictiveness doesn’t change over time.

  • #8840

    [email protected]
    Participant
    Ŧallars: Ŧ 22.42

    I just got my first blood test results after being on 100mg Allopurinol for four weeks. My uric acid is down to 6.4 mg/dL from 8.0 in January and 8.3 last May.

    With a target level of <6.0 for gout patients, I’m guessing increase dosage to 150mg and check again in about four weeks?

    My other Comp Metab Panel numbers have remained consistent over the three tests and are in safe range. Overall, I am pleased with these initial results!

  • #8841

    nobody
    Participant
    Ŧallars: Ŧ 530.53

    In my opinion, in your situation there’s no need to check again after an increasing your dose to a mere 150mg. It would be ideal to check very often but lots of doctors would have you go straight to 200mg anyway. So I think increasing first to 150mg and then to 200mg after only two weeks and without waiting for another blood test also makes sense.
    And like I said above, I think it would be reasonable to target 5 rather than 6 in your case which is why I had already dismissed 150mg as a dose you would want to settle on. One always need to wait for several blood tests to confirm one’s guesses but 200mg looks like a more reasonable dose for you.
    That said, as long as you seem to tolerate well the drugs targetting symptoms, there’s no urgency to increase your dose so you could justify being very careful. The one important thing was not to delay further the test you’ve just done. Since everything seems to be going smoothly, I don’t think there could be a strong argument against the details of any dose increase schedule you or doctor(s) might fancy at this point.

  • #8842

    [email protected]
    Participant
    Ŧallars: Ŧ 22.42

    Hypothetically, if 100mg brought my UA down 1.6 mg/dL, and if adding 50mg brings it down half that again, it would put me around 5.6 mg/dL. Why would you advocate 200mg? Not so much questioning your judgement as looking for the reasoning behind it. Is an SUA of 5 really going to make that much of a difference vs maybe a 5.5?

    I definitely do want to remain at 150mg for the moment and have it checked again in four weeks or so. More out of curiosity and for accuracy than concern this time.

  • #8843

    nobody
    Participant
    Ŧallars: Ŧ 530.53

    Sure, you can afford to take your time.
    Each additional mg has less effect so your estimate is too optimistic. On the other hand, SUA values often keep dropping a bit even if you don’t increase the dose during the first month or two. So yeah, 150mg might perhaps bring you down to around 5.5. But be aware there is some noise in test results so the next one could potentially be a disappointment. Averages are the most informative numbers.
    As stated above, the main reason to aim at 5 (a pretty random target but you have to pick a number) would be the amount of time you left your gout to fester. This means you’ll probably be stuck with gout symptoms for quite a while and a lower SUA should theoretically both help keep these symptoms fairly mild and speed up the curing process a bit. The evidence for this is quite weak but that hasn’t stopped our host talking about taking the maximum dose without regard for SUA values. For what it’s worth my doctors don’t care much for targets either and figure that lower is better. At least there’s some support for using 5 as a target in the guidelines. In the end, you’ll have to observe the effect of the therapy on your symptoms over several months (keeping in mind the cognitive biases we are all subject to) and make an educated guess about what target might be right for you.

  • #8846

    Fire Titan
    Participant
    Ŧallars: Ŧ 4.99

    Hi.

    I am also a fellow gout sufferer …aargh
    1. 48 years old
    2. First attack in toe joint
    3. Could not walk for 5 days intitially(Atttack lasted 1 month)
    4. Took Indocid (Anti inflammatories 3 times a day for 2 weeks)
    5. This did not work so well so took predisnone for 1 week – immediate relief
    6. Then Dr put me on 100mg Allopurinol and 1 Colchicine tablet daily
    7. Been taking this medication for 10 days now and swelling seems to be going down and pain ok now.
    8. Skins is peeling on joint area and reddish/purplish
    9. Pad of index finger sore ? , leg bone above ankle sore , elbows sore ?
    Is this because the Allopurinol is getting rid of crystals elsewhere in my body that were not active soon , not sure
    10. Only drink water (3litres), coffee (1 a day) , tea sometimes & sparkling
    water
    11. Eating no meat, but some fish and chicken
    12. I have high iron, not haemachromotosis, but Dr said two years ago to give blood but ignored her, could high iron contribute to gout , I have heard yes
    13. Waiting for Blood place to call me to give blood
    14. My friend got gout attack but only took Allopurinol for a month and then stopped and he has not has an attack for years.
    12. Good web resources

    https://www.hss.edu/conditions_gout-risk-factors-diagnosis-treatment.asp
    https://www.medicines.org.uk/emc/files/pil.6006.pdf
    https://www.racgp.org.au/afp/2016/may/the-management-of-gout-much-has-changed/
    https://ard.bmj.com/content/annrheumdis/33/4/304.full.pdf
    http://www.healthtalk.org/peoples-experiences/bones-joints/gout/diet-and-self-management-gout

    https://journals.sagepub.com/doi/full/10.1177/2040622312462056
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1954685/

    13. So it’s been nearly 1 month now, swelling has gone down but not cokmpletely
    14. Aim to only take Allopurinol and Colchicine for 1 month, but according to the above resources , it takes 3 months for the number of crystals to halve
    and then from 3 months to 3 years to get rid of them completely
    So may need to take the meds for at least 3 months.

    14. So many factors to consider
    a) Diet
    b) High iron
    c) Fitness
    d) Body weight(fat)
    e) Genetics
    f) Specific gout triggers

    15. Effects of Allopurinal and Colchicine I have had
    a) Hot flushes
    b) Skin went oily for a few days after taking , acne
    c) More joints became achy (Finger,elbow,leg)
    d) Funny taste in mouth
    e) Upset stomach first few days not to bad
    f) Not feeling 100%
    g) Cough I had has not recovered (Wheezing like athma)

    So in conclusion it seems diet only reduces Uric Acid levels by 1mg
    Medication is the answer
    Just like others dont want to rely on medication all my life
    My friend has been taking Allopurinol for 30 years now , and he says he stopped it once, major attacks

    I cant afford to stop walking for a month !!!
    So just like you I would like to know long term side effects on kidney etc.

    Apparently studies show that after long term Allopurinol use , UA levels go back to what they were 1 to 2 weeks after stopping.

    The reason why people may not be getting attacks is that the uric acid “store” has been depleted and needs to build up again before the crystals start forming again (Curse you damn crystals !!)
    But those who do get attacks after stopping , maybe crystals still exist and get re-activated ?

    One of the articles analogies was quite good , UA crystals are like unlit matches in your joint , unlit no worries , then once it is triggered , wildfire and then the body sends white blood cells to fix it which causes inflammation and extreme pain
    So colchicine to dampen the matches and Allopurinol prevents new matches from getting created.
    But at the same time as the overall UA level is being reduced in the body , the body will try increase and then suck those crystals or dissolve them out of the joints, that’s how I understand it.
    So we need the meds to do that.

    The thing is what happens if you have naturally high UA like I have naturally high Iron levels !!
    How can you reduce without the meds besides diet and exercise.
    Maybe diet and exercise are not enough.

    Anyway hope this helps everybody and happy to chat.
    I really empathise with all on the forum.
    This was the most painful thing I have ever experienced in my life and completely debilitating , I had to work from home for nearly a monnth, but some people can’t do this and could lose their livelihood !!

    From the 4 friends I have spoke to which are on Allopurinol for a long time now , none of them have had an attack while on the meds , so very good , the issue is that not happy with taking daily meds forever !!

    Good tips
    a) Buy a water bootle and put it on your desk to regularly sip water
    I bought a insulated Kleen Kanteen one excellent on with a push in nozzle
    Dr said dehydration can cause gout
    b) Always take meds with food to prevent upset stomach
    c) Swimming is a good exercise for aerobic exercise if you cant walk
    But my foot was still a bit sore kicking the water !! so sensitive.
    d) Buy/wear sandals that dont touch your toe joint , I found that closed shoes make your gout area expand like a balloon

    Thanks for all your posts guys & gals the info is really valuable !!
    Cheers
    Firetitan

    • #8847

      nobody
      Participant
      Ŧallars: Ŧ 530.53

      Hi Fire Titan,

      You volunteered a lot of information but not your UA test results. It is NOT the case that simply taking allopurinol will eliminate crystals after a number of months. You must also take enough allopurinol… and how much is enough depends primarily on UA test results. 100mg a day is typically not enough. Maybe you understood this already but I wanted to make sure there was no misunderstanding.
      Likewise, dosage also affects the effectiveness of anti-inflammatories.
      Lots of people have had attacks on allopurinol. It seems you started very soon after you experienced your first clear gout symptoms so you are less at risk and a sufficient dose should cure you quicker than many others.

      About side effects, it really depends on the individual.
      You should AT LEAST get your your liver and kidney function markers tested. These are fine in most cases but not in every case! Allopurinol is a harmful drug to some people and a deadly drug to a few.
      But this is not all about blood tests. The side effects you feel also matter and the ones you listed are somewhat worrying in my opinion.
      I’d say the first thing to do is to determine which drug is causing this. AFTER getting a blood test, is it possible you could stop colchicine and take prednisone instead for a short while to see what that does to the side effects you’re experiencing? Ideally, you’d want to test allopurinol alone but that may not be practical depending on your ongoing inflammation.
      There are alternatives to allopurinol nowadays if it turns out you are suffereing from persistent side effects. So don’t keep taking a drug which slowly grinds you down.
      And if it turns out you aren’t getting serious side effects from either anti-inflammatories or colchicine, consider taking both to suppress gout symptoms (obviously you want to discuss drug combinations with your doctor before trying them). Some people have taken quite large amounts of both drugs which is obviously not ideal but as you’ve noticed gout can be debilitating so some people are motivated to do whatever it takes to suppress the symptoms.

      The effectiveness of changes in diet and lifestyle also vary a lot between individuals. I was able to lower my UA by more than 1mg.
      Fish and chicken are also meat, and no better than mammalian meat as far as UA is concerned. Avoiding mamallian meat might have an effect on your iron however but research this carefully before jumping to conclusions.

  • #8848

    Fire Titan
    Participant
    Ŧallars: Ŧ 4.99

    Hi Nobody

    Thanks for the rapid response.

    Yes I don’t have a copy of my uric acid levels, but the Dr said it was
    6 and normal was 5 , so only one above ?

    Yes the Dr said 100mg for the first month, then increase to 200mg for the next month , then to 300mg , so I understand the amount is quite important.

    Yes will get this tested after the first month of allopurinol and colchicine
    Yes I want to stop the Colchicine, so just waiting for the 1 month mark.
    New symptoms after taking both for 11 days
    a) It seems my inside leg bone by my ankle is sore when I press it, not sure I dont think I knocked it
    b) My index finger seems to have a bony raised portion that I did not notice before and yesterday my left index finger was sore when I was typing on the keyboard.I compared it to my right index finger and it was not so prominently raised.Not sure if this is the allopurinol somehow activating crystals in my index finger joint ?I hope not
    c) My inner elbow joints are sore, these were sore for 3 months before but I put that down to to many bicep, tricep curls at the gym ,maybe not maybe its the crystals, they seem to ache more now after the medicine
    d) I took 3 x 5 day courses of predisnone , one course when I had Tinnitus, the second course when I had a skin rash and the third course for this gout.
    So I dont think I want to take anymore.This was over a few month period.

    e) My inflammation is coming down a lot in my toe joint , peeling skin still a bit purplish red, and still sensitive when it touches my shoe and expands when I walk for a long time. But at least I can walk now.
    I still get sharp shooting pain sometimes, but its bearable.
    I’m not expecting this to go away fast maybe after a month of meds maybe?

    f) Not sure about the side effects if they are serious , you say they warrant further investigation ?

    g) Yes variability of UA level reduction must depend greatly on the individual, but from ,my short research it seems that it does not reduce by much or trying to maintain such a strict diet is very difficult.
    I don’t drink alcohol at all and do gym at least 3 times a week , but I think how the crystals formed was because my uncle has gout so genetic and I have been eating mainly meat and chicken for lunch and dinner with no vegetable days for a long time(years) so must have UA crystal formation because of this.
    Also I drink soft drink maybe one a day , lemon lime and bitters or sprite , no pepsi or coke.And one coffee.

    So my initial trigger for my first gout attack was

    Day 1 :- Drank two glasses of champagne (I never drink)
    Also ate a lot of “unknown” finger food at a school function

    Day 2 :- Ate a pizza

    Day 3:- Ate a 7 course chinese meal for my Moms Birthday !!
    Meat,Chicken,etc

    Day 4:- Gout Attack, could not walk excruciating pain !!

    Yes diet is key , but I dont think I could live without some chicken at least 🙂

    So I think my trigger was the alcohol, but it could of been the unknown finger food I ate, some kind of sea food.

    So a question I have is how long do you have to take Allopurinol and Colchicine together for ?
    I understand Colchicine is to prevent gout attacks and Allopurinol reduces the uric acid in your body.

    The other thing is what are serious side effects ? of the meds and as you say which med is causing it.

    I think the treatment length will depend on how many crystals you have and how your body responds to the meds.Not really keen to have a needle stuck in my toe joint to extract the synovial food , so they can estimate crystal number !!!

    What about having an MRI? will this show the number of crystals or are they too small

    I did have an X-ray but nothing comes up.

    One thing for sure, without medication I don’t think the crystals will go away by itself.
    If I eat like a monk for a long time maybe, but then what happens if your body has a natural tendency (genetic) to make high UA

    I read that some vegetarians still get gout !!!, so must be genetic then if they dont drink any alcohol and stay away from high fructose.

    So many questions, and your body is the guinea pig.

    Anyway thanks for the comments, just counting the days when my foot is normal again !!

    I did ask the Dr for another Uric Acid test after I dieted for 2 weeks after the attack , but my doctor said this too soon, so I could not find out whether the dieting had any effect on my UA levels.
    But I will ask after taking the meds for a month and see what they have dropped to, the thing is even if they have dropped which they are sure to , the crystals still exist and this is the source of the pain.

    • #8849

      nobody
      Participant
      Ŧallars: Ŧ 530.53

      Having joint symptoms where you never had any before (or only rarely) is expected when you are starting allopurionol.
      But the big toe typically gets better quicker than this. Sometimes it lasts longer, especially with insufficient treatment.
      2 weeks is not too soon to do a blood test but sometimes you’ve got to play along with your doctors when their ideas aren’t horribly wrong so waiting a little more for your blood test and allopurinol dose increase might make sense. But in the meantime perhaps you could see your doctor about a more effective treatment for your symptoms? Maybe you’re not taking enough colchicine. And if you didn’t get any side effects from Indocid, perhaps you could take it in addition to colchicine. The dose you took the first time wsa probably insufficient but, after being on colchicine for a while, you don’t need to take as much as would be necessary during the most acute phase of an attack and when there’s no colchicine in your system. Some doctors do not understand dosage (a gout attack isn’t a matter of life and death so they have more important things they need to know).
      How long you’d need to take colchicine and/or Indocid (or similar) would depend on your symptoms. Unlike allopurinol, you can try to quit such drugs as often as you want. Worst case, you’ll get nasty symptoms.
      And unlike allopurinol, these aren’t drugs you want to take every day for several months if you can avoid it (nevermind several years!).

      As to the non-joint side effects you mentionned, all the investigation they might require is quitting colchicine. Colchicine has unusually strong side effects. They might even go away on their own while you are still taking colchicine.
      But if they persist when you are taking allopurinol alone (or allopurinol together with a drug which has never given you such side effects), yes: I wouldn’t ignore them. Allopurinol is something you want to take for the long haul so you can’t accept the same side effects you’d accept for a drug you are only taking for a few weeks. It may be mere discomfort but it could also signal slow damage or simply a developing intolerance.

      The main problem with diet is that most of the information you’ll find by looking around is worthless and that the useful information you can find isn’t comprehensive. When people aren’t told what reduces UA in the first place, naturally they will fail to achieve results.
      Sticking to a diet tailored to lower UA isn’t very hard as long as you’re not an alcoholic. Giving up animal flesh is as easy as finding something else you like to eat. It might take some time (obviously you can’t simply yank something nutritious out of your diet without making other changes!) but it’s much easier than losing weight for instance (though losing weight is in some cases the main thing you’d need to do to lower UA!).
      I wouldn’t overly concern myself with diet in your situation. You’ve already started allopurinol which works much better than diet. Some things still matter because they complement allopurinol but you’ll most likely be fine if you simply eat a healthy diet (with veggies and stuff) and avoid alcohol as well as other diuretics.

      X-rays would only show something after years of pretty serious gout. MRIs are as I understand it not very specific (you wouldn’t ID crystals). Ultrasounds (is that the right word?) is another option which only shows the effects of crystals. Synovial fluid is very specific (it even discriminates between types of crystals) but hard to do correctly so can yield false negatives. I wouldn’t rely on any of these to guide treatment, only for diagnosis.
      What works best apparently is DECT scans but that’s fairly new and not many gout sufferers can get them. That’s the one thing (besides blood tests) which could guide treatment effectively.

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