nobody

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  • in reply to: Increas gout attacks after moderna vaines #10523
    nobody
    Participant


    Hi again,

    I don’t know what crystenza is so I can’t comment.

    I haven’t seen a study in which someone tested at 4.3 without tophi shrinking. But it takes time. And while I have seen studies in which people who tested lower got slightly faster results, I’m not sure that warrants taking chances with higher doses in your case. Still, it’s something which you might want to discuss with your doctors.
    I’ve never had DECT or obvious tophi but I still had to use canes over a year after starting a similar drug. And I wouldn’t be surprised if your uric acid problem was slower to resolve than mine.
    As you point out, without repeating the DECT it might be difficult to tell how the process is progressing. Even the visible tophi are more complex than lumps of uric acid. And bone deformations among other problems can not only look like tophi but appear in locations previously affected by gout as a result of the damage done by gout in the past.

    While swelling at the toe joint is typical of gout (and something I would expect in your situation), plantar symptoms (if that’s what you call “bottom soles”) could well be a different problem, perhaps only indirectly linked to gout (for instance by the way of mechanical stress).
    I would recommend getting examined by a doctor anytime you experience symptoms that feel different or which affect a location previously unaffected by gout.
    I assume you are taking colchicine and/or something like indo for your bouts of painful swelling.

    With regard to diet, perhaps I should stress that you should support your kidneys’ work at this time with adequate water consumption as well as by eating enough vegetables and fruits (in part because they contain minerals which may affect the acidity of your urine). Obviously, this recommendation might not apply if you have severe kidney disease or some other problem such as diabetes which might require you to follow an unusual diet.

    I haven’t heard anything from Keith lately (here’s hoping he’s OK!) and I’m unfortunately not aware of any change with regard to the registration situation.

    in reply to: Hi my Uric acid level has never been over 5 but i have Gout #10519
    nobody
    Participant

    Well, I don’t understand when each value was measured exactly. It matters a great deal whether you were testing at or below 5.0 mg/dl before taking febuxostat or not.
    If you previously had substantially more uric acid in your blood and considering you experienced repeated gout-like symptoms, it is likely there is solid uric acid in your body. That is what causes gout symptoms, not the uric acid in your blood at any given time. So you could in principle experience gout symptoms with even lower amounts of uric acid in your blood.
    I assume you’re talking about a diet but there are many different diets that people are on so I can’t possibly guess how it could impact your symptoms. But you should know that it is not uncommon for a diet to have no material impact even though the dieter believes otherwise.

    in reply to: Hi my Uric acid level has never been over 5 but i have Gout #10517
    nobody
    Participant

    Hi,
    How did you come up with these numbers and were you already on febuxostat when you came up with them? If so, how long have you been on febuxostat? It often takes a long time for such drugs to cure gout.

    in reply to: Increas gout attacks after moderna vaines #10515
    nobody
    Participant

    @Keith, we still didn’t get a reply about registering so that people won’t be forced to log in through some kind of social media account! As you can see, that can be a problem.

    AP makes purines less important because it inhibits the purines which are typically responsible for the bulk of the body’s production of uric acid. AP does not however affect directly the uric acid you produced through the years and which accumulated in your body which is why many are troubled by gout symptoms for a while after starting AP. Purines still matter because (at reasonable doses anyway) the inhibition isn’t complete. And most of the other ways in which diet affect uric acid are not affected by AP so you might still need to watch the minerals and the amount of protein you eat for instance. This might help your body getting rid of the old uric acid faster.
    Because I don’t think most people actually need tables and because I’m not aware of a fact-based document which explains what foods one should eat or avoid in a manner that anyone might understand, I’m reluctant to point people to food tables when they don’t seem to have understood how to interpret them. I certainly wouldn’t want you to obsess about the wrong things based on a table which is never going to be comprehensive anyway. I understand Keith stopped distributing some of the available technical information for similar reasons. That said, if you insist I could point you to a japanese paper featuring unusually pertinent measurements of the purine contents of some of the foods you seem to enjoy (and of some common foods).
    I’m not sure what “nutrition density” is referring to exactly but, like I said, the amount you eat is as important as the purine content per volume or weight. And people would normally eat a smaller amount of a nutritionally dense food. So while regularly eating a food which isn’t very nutritive but has many purines makes little sense, eating a small amount of a nutritive food which has more purines than you’d like could be more beneficial than harmful.

    The sex thing might be temporary, perhaps because your body is exhausted by its reaction to the unstability of the old uric acid. But you should talk about this to your doctors. If they think it is a matter of concern because it could be a sign of a worse problem or something, there are alternatives to allopurinol (one of which is quite common) you could try instead. But if your doctors aren’t concerned I think you should consider waiting until you are feeling well again (no inflamation and so forth) to see if things don’t go back on track at that point.
    And if you changed your diet around the same time, it might also have to do with that rather than AP.

    in reply to: Increas gout attacks after moderna vaines #10513
    nobody
    Participant

    There are a number of issues in there, so brevity is going to be impossible.
    But yes, you can have roe as long as you take AP. Less briefly and according to the little information I’ve seen on the topic, ikura/sujiko and kazunoko seem OK wheras some others such as tobiko (which I understand is often used in sushi) are problematic.
    Among fishes, monkfish (excepting its liver) is known to be less troublesome, purine-wise. But really, most large fishes aren’t that bad. And the amount you eat is more important than the species (you need to take the water content into account so dried anchovies could be especially bad for instance).
    Taking enough AP means you don’t have to worry about purines. The trouble is that if you wanted to eat an obscene about, and use alcohol on top you might have to take a good bit more AP than if you were being reasonable.
    I don’t know what calculations you are or were using but there’s plenty of terrible information about purines out there. Chicken and salmon are no better than most meats for instance (most chicken parts would be worse than tobiko even if they’re white, not accounting for the fact that people typically eat a larger amount of chicken).
    Perhaps if you were to specify what “nutritional values” you are talking about, I might explain how you could use them.

    Your symptoms aren’t the result of the pork ribs. If the ribs had anything to do with your predicament, they were only a trigger. The cause is of course years of high uric acid and no diet will take away the extensive deposits identified by DECT. People often blame all manner of symptoms on what they last ate but that’s often simply superstition.
    Some people need to take care of triggers in their diet but purine numbers won’t tell you what happens to trigger you (unless you go really crazy with purines, which might be a trigger of sorts). There are many non-dietary triggers such as dehydration or (potentially) vaccines.
    Some people also have an iron problem in which case the iron content of certain meats might be have on effect on gout but that is again a separate matter from purines.

    I didn’t describe “mild/moderate short term pain”. What you seem to be describing is the period between actual attacks, which can sometimes last years at the early stages of the disease.
    Starting AP often triggers gout, which is why people are often put on colchicine or ibuprofen-type anti-inflammatories when starting AP. Unfortunately, if you had loads of solid UA, that initial phase of the treatment is probably going to last longer than people are normally given such drugs for which is why it would make sense to take more AP (and avoid alcohol) in order to shorten this phase.
    There’s no call to panic but you have to understand that lowering the amount of uric acid in your blood makes the solid uric acid unstable. That wasn’t much of an issue for me but if you rarely (if ever) had serious gout symptoms, this could be highly unpleasant. Many experience such unpleasantness as part of the treatment if they had negelected excessive uric acid for many years. If you stick with AP (and make sure you are taking enough), this will be transitory and can in any case be managed with the usual anti-inflammatory techniques.

    in reply to: Increas gout attacks after moderna vaines #10511
    nobody
    Participant

    There are two ways to look at it: either the treatment phase is over simply when you stop having symptoms (inflamation and so forth) or when there is no more solid uric acid in your body. The problem with the first approach is that it is only knowlable in retrospect but, outside of clinical trials (and even then, what kind of deposits can DECT reliably detect?), no one is going to know when there is no more uric uric acid in their bodies either. In many (most?) cases, that’s not going to be clinically significant either so I would normally go with: the treatment phase is over when you stop having symptoms.
    At that point, eating badly on a hot day might possibly give you very mild inflammation for instance but things like vaccines won’t be a real concern anymore as long as you keep the average amount of uric acid in your blood from staying too high for too long. How high is too high and how long is too long will depend on individual factors such as how chronic your gout was or how aggressive your immune system is (which varies with age) but in some cases that can be a very long time indeed if the relevant studies can be taken at face value.
    For instance I haven’t used crutches for more than 3 years and I can’t recall getting any gout-like symptoms from either Moderna dose. Because I used to experience chronic inflammation, my behavior very much changed in some respects at the end of the treatment phase.

    Please sleep quietly. There is of course no rush.

    in reply to: Increas gout attacks after moderna vaines #10509
    nobody
    Participant

    I understood your intent with regard to the mRNA vaccines.
    But, as with your pork ribs test, testing at 4.5 during treatment implies a very different risk profile than testing at 4.5 after treatment. Most people taking a drug like allopurinol and testing at 4.5 would have completed the treatment and could probably eat a few pork ribs or get vaccinated without issues.
    On the other hand people such as yourself who evidently still have plenty of UA in solid form around their joints are still very much at risk. Indeed the amount of UA in your blood could quickly rise to a very high level if many/large UA crystals started dissolving. That’s because allopurinol reduces the amount of UA produced by your metabolism (often quite drastically) but has no direct effect on old deposits/crystals.
    Someone in your situation would therefore do well to take colchicine or some other immuno-suppressing drug before eating something like prok ribs. But how would such drugs affect mRNA vaccination? I have no idea. The whole point of these vaccines is to trigger your immune system. Hopefully colchicine is specific enough that taking it wouldn’t reduce the efficacy of mRNA vaccines but I have no idea if that’s actually the case and I suspect most doctors would be clueless as well.

    The problem with ice if the amount of UA in your blood is low (or even only a bit high) is that it could easily prevent UA from dissolving. If the inflammation is due to a dissolving deposit, my main concern would be that ice could not only make it worse but also prolong the attack.

    Regarding the login process, I agree you shouldn’t be required to login with your name and I did ask Keith about that a few days ago.

    in reply to: Increas gout attacks after moderna vaines #10507
    nobody
    Participant

    Hi Edward!
    As far as Moderna is concderned, I would have been surprised to get gouty side-effects from it since I assume my uric acid problem is sorted out (certainly I wasn’t experiencing recognizable gout-like symptoms in the months leading up to the shots) but I’m not surprised to hear that it seems to have been a gout trigger for you since anything that irritates the immune system could trigger gout. These mRNA vaccines are such a novelty that they might well have significant yet unknown effects on conditions such as gout.
    I wasn’t lucky enough to get a DECT but am not surprised by the results of yours considering the history of symptoms and uric acid test results you described.
    It looks like you’re doing the right thing and getting your uric acid under control. Because your gout was untreated for so long, you could perhaps discuss taking slightly more allopurinol with your doctors if they think your body is tolerating it well. That shouldn’t be necessary and isn’t risk-free but could speed up your treatment and therefore reduce the risk of serious side effects from the drugs such as indometacin you take to deal with symptoms. In any case, you’ll need to be patient because all these deposits (and there may be more that the DECT didn’t detect) will probably take a long time to be completely eliminated.
    So the one thing you could perhaps work on at this stage is taking better care of your symptoms (prevention as well as treatment) while they are still serious. But since you’ve had much experience with them by this point, perhaps you don’t need any more advice. It would be the same advice I would give to most gout sufferers anyway and so is available in many other forum threads and explained more thoroughly in many of this website’s pages (outside of the forum).

    in reply to: meta: logging in, joining #10504
    nobody
    Participant

    My cynical view about “improvement prorities” AKA wishlists is that they usually amount to a way to keep “thinking about improvements” AKA procrastinating. But maybe I only see it that way because I’m terrible at being productive.
    It’s a different deal when there’s a problem that actually prevents a service from delivering. That kind of work tends to get done. And my point was: how would someone who wanted to post here for the first time proceed?
    The https://goutpal.net/about-goutpals-gout-network/log-in-and-registration-help/ page states: “Sorry. Registration is not allowed in this site.” So how do new people join, if not through a “social login”?

    There may not be a problem with the emails generally, only with the dead end I got into by trying to login as a wordpress user rather than by using the convienient form I was ignoring, perhaps because it wasn’t available some years ago. That dead end was Imunify360 by the way.

    in reply to: “Grape Tomatoes”? #10501
    nobody
    Participant

    The normal uric acid range is not to be used to control gout. If you still have symptoms after years on allopurinol, chances are your uric acid remains too high because the dose you’re taking is too low. So do get ahold of your numbers!
    There are affordable devices which measure the amount of oxygen in your blood. Because that’s a vital part of our metabolism, getting oxygen typically happens automatically and most people would have enough most of the time without needing to exercise or anything like that. Exercise might help getting fresh blood where it’s needed however.
    You should make sure you’re getting enough protein. People would not normally get nearly enough from vegetables (unless they think of legumes as vegetables). If you used to eat too much protein, eating less might have helped but actually depriving your body of the amount of protein it needs is extremely unhealthy in the long run!

    in reply to: Recurring gout #10498
    nobody
    Participant

    I’m not sure what exactly you mean by “naturally”. Whatever you had in mind, anything as effective as allopurinol could also be harmful, and the downsides of allopurinol happen to be better-understood.
    Once your gout is cured, you should have plenty of time to experiment with ways to quit allopurinol (or a similarly effective alternative) while keeping your uric acid under control. Failure at that stage would be much less harmful than failure now.
    So I would recommend focusing on the precautions people should ideally take when it comes to allopurinol and similar treatments: making sure you indeed have gout, making sure you don’t have known conditions or genes that would potentially make allopurinol very dangerous to you and planning the careful monitoring of the effects of slow dose increases (starting with a very small dose).
    We know who (that is, people who have East Asian ancestry) should get what genetic test before trying allopurinol for instance. But what do we know about the dangers of berberine to this or that group or even about the common metabolic diseases that a seemingly healthy diet might trigger in a small number of people?

    There would be lots of other things you could try but would they amount to distractions at this point?
    If you’re willing and able to decisively address the cause of gout, doing that ASAP is what would best protect you in the long run against worse attacks, the lasting damage they might do, the indirect effects of impaired mobility (there’s a reason doctors recommend regular exercise!) and the side effects of anti-inflammatory treatments which are merely dealing with the symptoms.

    in reply to: Recurring gout #10496
    nobody
    Participant

    The normal range for uric acid is irrelevant to gout. 0.49 is unfortunately way too high but that reading could be a fluke. Do you have older numbers that would confirm that value is usual in your case?

    Taking colchicine at the first sign of an attack may be too late (depending on how your attacks work and on how good you are at noticing and recognizing the early signs). Colchicine works relatively slowly and builds in your system so to speak. Recurring attacks are in my mind a sign of ongoing inflammation to begin with which suggests you can’t rely on feeling that an attack is over anyway. So you could perhaps try to take colchicine every day for a while, and taking more on top in case of an attack. But you should run this plan by a doctor before taking way more colchicine than you’re used to. I don’t know your medical situation and I don’t even know how much colchicine there is in “1 or 2”.
    Colchicine dosage in controversial and it works differently for different people. My point isn’t to recommend a particular dose but to suggest experimenting within the bounds of what’s safe for you. My rheumatologist told me I could take more colchicine than I ever did but it is a dangerous drug and not everyone should take as much as I did when experimenting.

    The effect of such a juice will be different in different cases but I don’t think it would do much provided you already had a decent diet.
    In any case that’s not going to fix 0.49 mmol/L if that’s a typical value for you. The only quick fix for that is a drug such as allopurinol. In some cases it is the only practical solution. Dramatic lifestyle and dietary changes can sometimes do wonders but if you already have a decent lifestyle and diet, there may not be that much room for improvement. Certainly supplementing a bad diet with basic foods or vitamins is unlikely to make a big difference.

    Finally, you shouldn’t be getting any attacks Alan! I don’t eat corpses myself but that’s not going to fix gout in most cases. Attacks are a sign your usual diet is wrong or that your gout can’t be fixed with diet.
    Note that if you fundamentally changed your diet recently, that’s a different matter because it can take a very long time for the attacks to go away once you’ve allowed your gout to fester.

    in reply to: Recurring gout #10493
    nobody
    Participant

    Hi,
    Obviously I can’t tell if what you have in the ankle is indeed gout. And assuming it is, I don’t know if what you’ve been eating or drinking was a major factor. So if we pile assumption on top of assumption… it’s what your diet and lifestyle over the years that matters most, not what you just consumed.
    People often overthink triggers and whatnot because they want a convenient explanation for their troubles and a quick fix but gout is a slow disease. The way to beat it is to consistently maintain the amount of uric acid in the blood at a safe level. And the longer you’ve allowed gout to fester, the longer it’ll take to go away. Once it’s fully developped, you’ll keep getting symptoms for a quite a while even if you did everything right. People often get confused and fail to treat their gout because they’re not rewarded for doing the right thing but it simply takes patience.
    So the first step is to measure that uric acid… do you know how high yours is?

    That said, since you said “red meat”, I suspect you might have the wrong information about purines or indeed about what affects one’s uric acid more generally. You could research this for yourself or sak for some help in this regard but really, what you should focus on first is your uric acid numbers (procuring the past ones as well as a plan to monitor this number more closely in the future).

    Yeah, the cold is not your friend (and neither is heat if it brings about mild dehydration).
    You might also want to try a different way to take colchicine in order to put an end to this string of attacks. Other drugs might also help but I think it’s the safest one to deal with recurring low-level symptoms. But again, this would at best be a kind of bandaid. You really need to focus on the underlying problem!

    in reply to: Gout attack length of time. #10491
    nobody
    Participant

    Hi, Paul. Gout may not be as complex as you think. I recommend approaching your diary and theories scientifically (as opposed to a confirmation bias). Things which affect us seem to require an explanation but often times, they’re just random. That’s why people have developped all manner of superstitions about diseases, the weather or war over the ages.
    One of the few things we know for a fact about gout is that getting the amount of UA in the blood low enough for long enough gets rid of most (if not all) the symptoms. This value isn’t used because it’s particularly reliable or stable measurement (quite the contrary!) or because it causes gout directly but because it’s a practical and cheap measurement. So you shouldn’t guess that number but get it measured regularly until your gout is cured.
    If you have gout and the amount of uric acid in your blood is too high (even if it’s only too high every other time it’s measured), no amount of obsessing about trigger foods or orthoic devices will save you from a world of pain in the long run.
    Don’t get me wrong: custom soles do seem to be helpful for some plantar problems which you can develop irrespective of gout. But they aren’t a cure for gout!

    Losing weight on a low-purine diet isn’t especially challenging. Perhaps I could help if you told me what you find difficult to balance.

    Finally, if you do take diclofenac on a regular basis I would recommend monitoring the most common side effects (for instance by getting a gastroscopy as well as by getting your bloodwork doneregularly ) as well as any less common side effects you might have experienced in the past.

    in reply to: Gout attack recurrent #10485
    nobody
    Participant

    Earlier I asked: “How do we know Don has gout?”. Now I have to ask: how do we know he doesn’t? What tests has this podiatrist done to rule out gout?
    Flares aren’t directly caused by eating beef and drinking but by an excessive amount of uric acid in the blood. If you have enough (as many do), you’ll get flares even if you never drink or eat beef.
    And you had one uric acid test come back with a very concerning value which implies you might be at risk of developing gout even if you current foot problem has a different cause…
    So I would recommend that you see a rheumatologist if possible and regularly monitor the amount of uric acid in your blood in any case. I think you should also try to determine why you have so much uric acid in your body because, while that is most likely not a sign of an emergency, that potentially has serious implications besides gout.

    in reply to: Low red blood cells/ low Haemoglobin #10483
    nobody
    Participant

    Hi,

    I’ve sent an email to someone who also had (if I recall correctly) a problem with haemoglobin. Perhaps they’ll be able to help you.
    In any case, you can stop allo for a while and see what that does to your blood. If it turns out allopurinol was the issue, there are alternatives, some of which might or might not have the same effect (you might have to experiment on yourself to find out).
    But if your doctor think your haemoglobin problem isn’t too serious and might be explained by iron deficiency, perhaps try to fix that before stopping allopurinol.

    If you’re going to stop taking allopurinol, consider taking heme iron (or whatever that’s called) supplements instead of eating meat. But you might as well eat meat if you’d be eating fish or chicken otherwise! It sounds like you were using the wrong information about diet, in which case discipline won’t help…
    If you eat enough iron in the first place, dairy would normally not be an issue but of course everyone is different. If you have lactose intolerance for instance, you might want to try switching to dairy products containing very little lactose.

    in reply to: Fish/Omega 3 supplements #10479
    nobody
    Participant

    The pure oil shuold be fine but I don’t expect fish oil supplements to contain pure oil since people might also want to get vitamins and such from them. Still, if it’s mostly oil and small amounts at that, the purine content should be minimal so it shouldn’t be a significant problem gout-wise (just make sure it’s indeed oil you’re consuming and not some mystery compound).
    I’d be more concerned about quality and cost. It used to be that bad fish oil was commonplace (at least if you didn’t leave anywhere near the fish) and the supplement industry is generally untrustworthy. Prices can also be crazy. On the other hand, you should be able to get decent quality vegetable omega3 pretty cheap. I’m aware the composition is different but you could easily put enough linseed oil in salads and such that you’ll metabolize a sufficient amount of the compounds which are more easily obtained from fish oil supplements. You only need to be willing to approach it from a food/cooking perspective rather than a supplement perspective and you’ll end up consuming way more omega3 than you’d get from fish oil.
    That’s the main reason I don’t consume fish or fish oil.

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