nobody

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  • in reply to: Gradual gout attacks? #10329
    nobody
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    You can’t reliably tell people who have gout from healthy subjects and you don’t need to do unreliable dietary research on the effects of dairy to know that it has an effect since you can ascertain its main effect (purines, or rather the lack thereof) in the lab.
    But this is irrelevant to most allopurinol users anyway.

    As to the first vitamin C study, such a study was unlikely to find anything conclusive since it is obvious it can not reasonably be compared to allopurinol and uric acid numbers are often especially noisy in gouty individuals requiring many more subjects or measurements (especially if you’re not careful about when and how the blood is drawn).
    As to the other study, the important thing when it comes to oxidative stress is as usual allopurinol dosage. Considering how many people take an incorrect dose, studying things which make little difference like vitamin C seems borderline irresponsible.
    Full disclosure: I don’t take large amounts of vitamin C unless I have an infection (and even then, very rarely).

    Going to the bathroom often may be the best thing you can do to support allopurinol in the early phase of therapy. Obviously you shouldn’t go overboard with water but it doesn’t sound like you do. Assuming you don’t have some kind of kidney problem requiring you to limit fluid intake, 2 litres isn’t much unless you’re not counting other fluids or there’s a lot of water in your food.
    For what it’s worth, I drink a good bit more (mostly plain water since I don’t do sodas) because it feels good and my mouth feels dry otherwise yet my GP hasn’t recommended drinking less (except inasmuch as it might interfere with my sleep as you point out).
    After your gout symptoms are mostly gone, if drinking makes you pee quickly, that may be a sign you don’t need to drink that much.

    in reply to: Gradual gout attacks? #10323
    nobody
    Participant

    Dairy works. That’s one of the few things we know. We understand some of the mechanisms at least. I wouldn’t compare that to the matter of vitamin C. But rather than distinguishing between healthy people and people who have gout (a dicey proposition), I’d distinguish between people on medium/large doses of allopurinol (and similar) from most people. If you’re taking enough allo, diet will hardly matter except for avoiding triggers during the early phase of therapy.
    Since you seem concerned about that, the one thing that would most likely trigger you is dehydration. So anything that makes you leak a lot should be avoided. Anything that makes you pee or sweat a bit more than usual can probably be mitigated by drinking more water. As for the rest (such as a few tomatoes), that’s a matter of avoiding stuff that triggers your immune system and that’s a pretty personal matter which in some cases may include gluten and whatnot. If you don’t notice tomatoes doing anything, no worries.

    in reply to: Gradual gout attacks? #10321
    nobody
    Participant

    My GP even told me at one point colchicine was the same thing as allo! The relevant specialist is called a rheumatologist. I wish I could say they are always knowledgable about gout drugs… but still, trying a random rheuma is a much better bet than a regular doctor.
    The main point in seeing a rheuma in my opinion isn’t even to get the treatment right but to make sure another joint disease isn’t mistaken for gout. A single uric acid blood test (especially if the result isn’t that high) in the context of a single gout-like episode can’t establish a gout diagnosis. Ideally you want crystals to be detected in the symptomatic joints, either with DECT or joint fluid aspiration. A simple ultrasound could help tell what’s going on though some doctors favor MRIs. But none of this is strictly needed if there a pattern of repeated flares with the right features along with several uric acid tests. Even though gout is the most likely explanation for your symptoms considering your family history, you don’t want another problem to be missed. As you point out, doctors are often so arrogant that it makes them dangerous…

    It’s correct that allopurinol is unlikely to help with a flare but that’s not a reason to stop it since interrupting treatment could easily cause a second flare soon afterwards or simply cause the flare to last longer.
    You understood correctly that allopurinol is typically not effective as a prophylaxis in the short run, though it could in principle work early in the treatment if the dose was large enough and if the disease was caught early enough.
    Ibuprofen or Voltarene on the other hand can work nicely as prophylaxis if you tolerate large enough doses well but for some people these drugs are seriously problematic when taken for too long.

    You don’t need to wait 4 weeks after restarting allopurinol to get your uric acid checked unless the number of blood tests you’re allowed to get is limited somehow. The value after 2 or 3 weeks would be instructive enough and I would in any case recommend more tests a few weeks afterwards considering the results are sometimes randomly off (in my experience anyway).
    You don’t want to suffer pointlessly on an allopurinol dose which is too weak. 200mg works for some people but others need more. The sooner you your dose right, the sooner you’ll get better (if this is gout).

    If you do indeed have gout, you should get your brother to get his uric acid tested and to show his ankle to a rheumatologist next time it acts up. Gout is a disease best treated early!

    in reply to: Gradual gout attacks? #10319
    nobody
    Participant

    Yes, this isn’t unusual. But…
    I was very surprised by “resumed allopurinol”. That’s not a drug that should be stopped and resumed, unless there is a very good reason.
    If you’ve started allopurinol a few weeks ago, requiring anti-inflammatories constantly for a while wouldn’t be surprising and not allowing the inflammation to start by quitting them entierly might prevent the need to take large doses for a long period of time (and once it starts, you might find it is best to kill it completely instead of quitting anti-inflammatories when it becomes very mild). Colchicine is often used for this purpose even though it’s arguably not an anti-inflammatory as such because it has different side effects and an effective dose can in many cases be taken daily for quite a while. If you haven’t been told you can’t take colchicine, ask about it. Some people don’t need it but it can be useful when inflammation lasts a long time or keeps coming back.
    With all these drugs, dosage matters. So talk to your doctor(s) about using larger doses for a small amount of time and what side effects to watch for. In particular, allopurinol will only work if you take enough and, unlike anti-inflammatories, you won’t feel that the dose is too low. So how much uric acid is there in your blood?

    And what’s the basis for your gout diagnosis in the first place?

    in reply to: Zero purine protein? #10317
    nobody
    Participant

    Well, I have been considering guanine as irrelevant. That of course may be a mistake on my part so exercise due diligence.
    And as the Japanese paper says, even adenine isn’t all that important. Still, I do take it into account even though I give it a low weighting. In addition, it’s often found in similar amounts to guanine to which I give a zero weighting so I do concur that the foods very low in xanthine and hypoxanthine typically have a much smaller effect on uric acid than their total purine content would imply. But since some people eat much larger amounts of vegetables and legumes than the average, I’m not prepared to gloss over the difference between “much smaller” and zero. I think veggie types do matter, as does the difference between legumes and eggs/dairy.

    in reply to: On-going gout issues #10314
    nobody
    Participant

    How it works exactly depends on the progression of the disease and other individual factors.
    But basically, yes: if you take enough allopurinol for long enough, that should prevent all attacks. At this point, anti-inflammatories are not needed anymore. The problem is that in many cases “long enough” can be a very long time indeed… hence the need for anti-inflammatories which are not as good at preventing attacks but work as soon as you start taking them.
    Another valid approach is to take an anti-inflammatory such as Naproxen after the attack starts as you are doing. But if you wait for the attack to start before taking it, you may need to take a lot more to stop it than would have been needed to prevent it in the first place. Which approach is best depends on how frequent your attacks are among other factors.
    Although Naproxen works to prevent attacks, in many cases the side-effects (some of which you just mentioned) make it a poor choice. When you are taking an anti-inflammatory to prevent attacks, you might have additional options not only in terms of dosage and delayed-release pills but you might also for instance be able to use colchicine which is arguably not an anti-inflammatory as such even though it prevents inflammation and helps it come down. Whether any of the alternatives to Naproxen-type drugs would be easier or harder on your kidney, I can not say. So this is something to discuss with a doctor who understands your specific challenges.
    Whatever approach you end up taking (and they can be combined), the important thing is not to be discouraged if allopurinol (or any other drugs which reduces the amount of uric acid in your system) seems ineffective at first.
    The time necessary for allopurinol-type drugs to work is also what makes uric acid testing important. That helps in guessing what a reasonable dose might be for each individual without having to wait years for the effect of a dose on the apparent part of the disease to become conclusive.

    Finally, there are many medications which can bring about gout attacks. But I can not say if that is what happened in your case or not.

    in reply to: On-going gout issues #10312
    nobody
    Participant

    Hi! I’m not Keith but I would like to let you know three things:
    -allpurinol takes a very long time to work and does not stop a gout attack (that’s the job of anti-inflammatory drugs)
    -there’s a well-known alternative to allopurinol which has been used in combination with ramipril in at least one published study
    -medications for blood pressure can have an impact on uric acid (some help and some are harmful) so it is very important to have one doctor consider carefully (with input from specialists) the drugs you take for both gout and hypertension in order to try to make the drugs you take work together instead of one against another

    in reply to: Zero purine protein? #10311
    nobody
    Participant

    Yes, as far as purines and their effect on uric acid are concerned, eggs and milk are not only fine to consume in large amounts but possibly the lowest-purine nutritious foods out there.
    I’ve been using the same Japanese paper as a reference for hypoxanthine and so forth but really, it’s obvious why eggs and milk would be fine!

    That said… consuming too much eggs and milk would potentially be unhealthy for other reasons and could even increase your uric acid if you ate ridiculous amount. As Keith says, uric acid is more complicated than just purines. If you’re not well-informed about nutrition (and it doesn’t sound like you are!), do NOT follow fad diets and other strange diets advocated by unaccountable persons on the web and elsewhere. I wish the advice of professionals was much better but that is unfortunately not the case everywhere. Still, following the advice of responsible professionals is probably your best bet even though you might decide not to follow it 100%.

    I also checked the links in the first post and I must say I don’t understand how Keith concluded from Zollner that adenine doesn’t raise SUA (I realize that’s not exactly what Keith said, but that implicit conclusion is clearly the basis for the table which followed the mention of Zollner). We know it does in the lab. And if I found the right paper, it even mentions adenine being converted to UA, xanthine or hypoxanthine.

    in reply to: Uric acid deposits in feet. #10300
    nobody
    Participant

    Colchicine seems to work to prevent severe COVID as well so there seems to be some kind of connection. The worst effects of COVID are autoimmune after all, same as gout.
    I’d say anything that gets the immune system worked up (such as food you’re mildly allergic to or indeed a vaccine) could potentially trigger gout.

    in reply to: Uric acid deposits in feet. #10298
    nobody
    Participant

    A few random musings:
    It seems quite common for people to develop gout on aggressive low-carb diets. This is probably in part due to inadequate hydration and your doc is to be commended for addressing that.
    A low-carb diet is very different (and much safer, unless you’re epileptic or diabetic) from a no-carb or keto diet in terms of its effect on your metabolism.
    You can’t tell which diet is right by the flares, unless you stick to it for years (or at least more than 6 months).
    There are no supplements required for a vegetarian diet, unless you actually mean a vegan diet which I would generally not recommend to people who have a uric acid problem.
    An old-fashioned vegetarian diet on the other hand is often helpful (depending on the details) but simply replacing animal fats which vegetable fats is unlikely to help with uric acid. That said, if you pick the right fats (such as olive oil) that may help your cholesterol and generally be healthier. Some fish fat is also generally recommended (though that may increase uric acid).
    Allopurinol is trouble, especially when you start it. That’s not some kind of legend. But not taking this type of drug with a uric acid as high as yours is trouble as well… typically much worse trouble in the long run.
    What are you going to do in the Himalayas if you get a flare worse than anything you’ve experienced so far? Be sure to pack effective anti-inflammatory drugs you know you can tolerate! You might also ask your doctor about taking a daily colchicine pill starting a few days before your trip until you’re back somewhere where gout would be less inconvenient.

    in reply to: Uric acid deposits in feet. #10296
    nobody
    Participant

    Keto and beer probably make this worse but you normally don’t solve a 10.1 by changing your diet (though it would help). It makes sense to retest anyway because the first result could be a fluke.
    Out of curiosity, what has your doctor told you to do about your diet?
    I guess the lumps could actually be uric acid with such a high result. A drug such as allopurinol is probably going to be the only way to solve this before it gets worse.

    in reply to: Gout Patient Mobile App Survey #10293
    nobody
    Participant

    Japan seems more advanced in the treatment of gout and the best information regarding purines I’ve seen indeed came from Japan so I would be interested in knowing more about the recommendations there. But while targets can be useful when it comes to calories for instance because you could consume too few as well as too much, so far as I know there is no benefit to be gained by increasing one’s consumption of purines.
    The information I received from doctors (or dieticians) in a couple of European jurisdictions has been mostly useless, and sometimes simply wrong. They know enough to tell people to moderate their consumption of alcohol but that’s about it. They never dared to provide me information about purine contents of foods in writing (the documents I’ve received about better-understood nutritional topics were inaccurate and/or bizarre enough!).

    Since you’re interested, I think reminders would be the most useful feature of an app though things like symptoms and water consumption might also be worth tracking. If I don’t write that down, sometimes I forget the last time I took a pill. Fresh exercise ideas might also be useful for instance but that’s not specific to gout.

    in reply to: Gout Patient Mobile App Survey #10290
    nobody
    Participant

    I also filled in the survey. In my opinion, the only answer worth sharing is why I don’t track purines so here is mine:
    “There is no way to set targets, and no point since zero is best in most cases. So while knowing what to eat and not to eat is potentially useful, tracking isn’t. There is also very little useful information (we’d need numbers for hypoxanthine and so forth) about the purine content of various foods so it would be mostly guesswork anyway.”

    Your answer to that question sounds like denial, Keith. The climate change denialists who aren’t liars or insane have similar arguments for instance. Things are never going to be known as precisely as we’d like and things are always going to be more complicated. The issue is: is the knowledge we have actionable?
    And in this case, yes it is. We do know which purines have a large effect on uric acid, and we have a rough idea about which foods contain significant amounts of such purines. We also know which purines have a smaller effect and, though they are ubiquitous, we have a more precise idea about which foods contain especially large amounts of these.
    Purines are as you point out not the only thing that matters about diet and more precise knowledge would be welcome of course, for instance when it comes to species of mushrooms. But we can work with the knowledge we have.

    in reply to: Uric acid deposits in feet. #10282
    nobody
    Participant

    The most useful bit of information to make useful guesses about your case would be the amount of uric acid in your blood, something which is easily and routinely tested.
    Unless perhaps you have unusually severe gout, I doubt these lumps actually are uric acid. Likewise I very much doubt uric acid working its way anywhere is what’s causing your pain. Your troubles might or might not be caused by uric acid, but if they are it’s most likely by the way of inflammation.
    Inflammation can often be controlled with judicious use of anti-inflammatory drugs but the underlying cause should of course be treated as well.

    I’ve had lumps as well (typically painless). So far as I know they’re harmless. Perhaps something like that within the ankle could cause trouble for instance. But as far as one can tell without an MRI (which I’ve never had for the foot or ankle), inflammation is the problem.

    in reply to: Gout and CKD #10280
    nobody
    Participant

    If nothing else, there are people who get kidney stones from excessive uric acid in the blood. While that’s in principle not gout proper, gout seems to contribute to uric acid coming out of solution (quite dramatically in some experiments). Does that happen in the kidneys though? I don’t know. But whatever the case may be, there is a correlation and some people take gout drugs specifically to prevent stones while some of the people who take the same drugs for gout apparently see their kidney function improve marginally.
    Gout could also contribute to a number of diseases through inflammation, stress, lack of exercise and of course the side-effects of the drugs people take for gout.
    Maybe someone has demonstrated an actual mechanism leading from gout to CKD but I know next to nothing about the topic so all I can offer is these general musings…

    in reply to: Hello.. and finally a decent source of info.. #10277
    nobody
    Participant

    Starting allo with 300mg is… not what guidelines say you should do. It’s like driving without a seatbelt or something… probably fine in most cases but the guidelines aren’t making the procedure more complicated for nothing.

    That explanation about waiting for your UA level to reduce makes little sense to me. No matter. Waiting some does make sense anyway, for different reasons. And it’s probably not worth picking a fight with your doctor over the number of weeks.
    The drug will require a long time to do its work anyway.
    The pitfall would be to wait, wait, and wait again as the clock is reset by one attack after another. Don’t wait forever is all I’m saying. While that’s not ideal, you can start in the middle of an attack if you need to.

    Hoping you don’t suffer another attack is not a strategy so instead of trying to lower the odds, I think you should focus on how to deal with a serious attack, just in case.
    1mg colchicine (you must have meant 1000 micrograms) was never enough to deal with my attacks. And sure, most people can take that every day when they start allo or febuxostat. It works to prevent attacks, or at least to make them milder.
    But once an attack has settled in, anti-inflammatory drugs such as ibuprofen is what people typically take. Even if you can get such drugs without seeing a doctor first, I wouldn’t recommend it because this drug class is actually quite dangerous. Instead, I would dicuss with a doctor the following:
    -can I take an NSAID on top of colchicine and febuxostat, and if so for how long without a break?
    -should I be taking a coxib instead of a traditional NSAID and should I be taking a PPI as well in case I need to take that NSAID for longer than X days?
    and most importantly you should ask: if the attack turns out to be really bad, what’s the absolute maximum I can take during a single day? When you ask that last question, swear you won’t take that dose two days in a row!
    I don’t know your medical history and so forth and I’m not even a doctor so I’m not going to answer these questions. That’s just what I’d discuss with my doctor if I wanted to be prepared.

    in reply to: Hello.. and finally a decent source of info.. #10275
    nobody
    Participant

    Hi.

    We’re Keith’s guests. But whether Keith actually is some dude, a kind of collective or an alien from outerspace I do not know.

    You don’t need to wait to be gout free to start febuxostat. If you frequently have long periods with no gout symptoms, OK. But don’t keep waiting and waiting if your gout comes back several times.
    It makes sense not to start it immediately after having developped a reaction to allo anyway but 4 weeks seems excessive. Then again, if your symptoms are infrequent, there’s no rush.
    If you also get a reaction to febuxostat, there are other options still but they are a lot less straightforward than allo and febuxostat. So I would recommend giving febuxostat the best chance you can… which means starting with a much smaller dose than doctors typically recommend and increasing it progressively. Since you know you are prone to reactions, best give your body a chance to get used to the stuff instead of shocking it with 40mg or some other brutal dose.

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