nobody

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  • in reply to: Gout or not? Tricky Gout Diagnosis #3792
    nobody
    Participant


    Hello again,

    You need to eat. And you need to eat enough of everything your body needs. The longer you don’t eat right, the more dangerous it is.
    Not eating enough can raise your uric acid. It can also worse your symptoms.
    If you don’t know what to eat, there are dieticians. But any reasonable person you know could help, especially if they’re vegetarian or vegan.
    There are so many things you could eat… but basically you need to be eating a lot of three types of food if you’re not eating meat:
    -either milk/yogurt or lentils/chickpeas/beans
    -cereals (or things made from cereals like bread)
    -fuits and vegetables
    And when I say you need a lot of each type, I really mean a lot. A decent amount of yoghurt would be half a liter per day for instance (of course you don’t need to eat that much if you also eat other foods belonging to that type, be it lentils or cheese).
    If you’ve been starving yourself, starting with hummus and pita would be nice for example if you like eating that. Just don’t forget to eat a lot of fruits and vegetables as well. What to choose really depends on your culture and on what you like.
    And of course you need to make sure you’re drinking enough water!

    Yes, Milurit is normally taken for longer periods. I suppose you’ve been told to take it for 20 days as a kind of test. At this stage, more information is needed. It doesn’t mean you won’t be needing the drug afterwards. In fact you might possibly need a larger dose.

    Getting more tests is good in my opinion. Your old tests results are relevant too.

    Last but not least, do seek psychological help if you’re not eating or sleeping or simply if you feel like you need someone to talk to about your problems.
    Needing psychological help doesn’t mean you don’t have a real problem. It simply means your real problem is hard on you.

    in reply to: Review Foundation Diet Pages #3724
    nobody
    Participant

    Re: “I believe a Pro/PRAL scoring system will benefit Gout Foodies”

    I took a look at the USDA’s abridged list and, neglecting items with missing values, spices, processed foods and such the only <-4 PRAL foods containing >10% protein were (ordered by decreasing protein content):
    Beans, black, mature seeds, raw
    Beans, pink, mature seeds, raw
    Beans, adzuki, mature seeds, raw
    Peppers, sweet, green, freeze-dried
    Seeds, lotus seeds, dried
    Peppers, pasilla, dried
    Unsurprisingly, beans are the star food but I didn’t see peppers coming, much less lotus seeds.

    I then tried the naive protein*PRAL/kcal and got somewhat more intriguing results. Here’s the top of the list (the first item scoring a good bit higher than the others):
    Peppers, sweet, green, freeze-dried
    Beet greens, raw
    Spinach, raw
    Amaranth leaves, cooked, boiled, drained, without salt
    Cowpeas, leafy tips, raw
    Peppers, pasilla, dried
    There are many foods bearing names I don’t recognize like kanpyo a bit lower down that list. The best beans score fairly well but still under 60% as low as raw spinach.
    In sum, amusing exercise but not very useful. Maybe with a more sophisticated scoring system…

    A big problem with this approach is that it doesn’t take the protein mix into account. People shouldn’t be getting most of their protein from beans!
    I don’t think there’s a way around scoring how the whole diet is balanced (something which is as far as I can tell is often done very poorly, even by professional dieticians).

    in reply to: Is 8.2 uric acid level too high? #3700
    nobody
    Participant

    Hi Cindy,
    I know you asked Keith but if those were my tests, I would not increase the dose.
    But tests are not the only reason to increase a dose. If the flares are not improving, that would be one of the reasons warranting a dose increase. In my opinion, frequent but short (typically lasting less than a day) and mild flares moving from one location to another can be a sign of improvement and do not count as a reason to increase the dose.
    And in answer to your earlier question, I would wait at least two more months before lowering the dose. Again, the symptoms matter as well as the tests.

    in reply to: Gout Seeker Archive #3685
    nobody
    Participant

    Spinach is OK. Sure, it’s not ideal from the purine perspective but on the other hand it’s the kind of food that helps your kidneys deal with uric acid. And if you take an adequate dose of allopurinol or similar, purines aren’t going to matter much while the helpful effect of spinach will remain relevant.
    People who drink milk seem to have an easier time with gout than those who don’t.

    Until you know what’s going on in your body and are taking effective medication, I think you ought to be careful with stuff like protein supplements.
    If your supplement is plain whey without dodgy ingredients, it should be OK in moderation but excessive protein intake isn’t great for untreated gout or your kidneys.

    Good luck finding a long term solution!

    in reply to: Gout Seeker Archive #3683
    nobody
    Participant

    It seems premature to give up on your job but I have no idea how easy it would be for you to find something else, how much of a setback you might expect by losing whatever seniority you’ve got and so forth.
    Beating this thing might take time and might possibly involve being less physically active for a while but it’s way too early to tell. It doesn’t sound like your gout problem is as of yet very bad so let’s not assume you’ll be one of the ones who has a hard time beating it.
    If you had test results and an experienced doctor, you might have a clearer picture of the road ahead. The appropriate medical specialist for gout is called a rheumatologist but having a piece of paper with a job title is of course not the same thing as having skill or experience…

    in reply to: Allopurinol dosage and gout pain relief #3682
    nobody
    Participant

    I’m not aware of hard evidence (as opposed to conventional wisdom which is subject to biases) but it’s not so much a matter of getting this “wrong” as a matter of over-simplifying it.
    If xanthine inhibitors were all there is to SUA and if all deposits were equally exposed to blood flow throughout the dissolution phase, your reasoning would be sound. But the actual system is a lot more complicated. Generally, you’re most likely right but there’s room for doubt when it comes to particulars such as how quickly people ought to increase their dose and when they ought to stop increasing it. Clearly, the optimal approach isn’t going to be the same for everyone.
    It’s not necessarily that easy to prevent symptoms by the way. Your forum is replete with people who can not this drug or who are already taking the maximum dose of that drug.

    My non-expert opinion is that there’s little point in wasting the time of someone who has an SUA above 10 with small doses.
    You still need to make sure the body tolerates the drug of course but there are doctors who slavishly follow protocols devised by profiteers and who would therefore (in Europe and North America) make their patients ramp up allopurinol slowly but prescribe a much stronger initial febuxostat dose whatever the patient’s status and history ought to tell them about the balance of risks involved.
    It seems to me the main issue in cases where SUA is very high should be whether patients would benefit from a drug or at least dietary intervention that helps with UA excretion in addition to the xanthine inhibitor. If there are enough deposits to overwhelm the body’s UA excretion abilities, no xanthine inhibitor dose is going to be sufficient to prevent temporary hardship.

    My anecdotal experience has been that a moderate dose is sufficient to make my SUA fall like a stone and that there are no worthwhile benefits from getting very low (as opposed to merely satisfactory) SUA test results. But I’m of course not claiming that what I gleaned from my experience is generally applicable. I’ve never had obvious tophi for one thing.

    in reply to: Mini gout flare whilst on Allopurinol #3656
    nobody
    Participant

    My assumption would be that your old crystals have already been dissolving, but slowly. Too slowly.

    There’s no magic about 30 days. The ideal time between tests depends on what information is needed.
    If you were doing well and both you and your doctor were confident no adjustment was needed, you might be tested less often. But you’re not doing well.
    Blood tests are not the only source of information. When you say “for 2 months I haven’t been able to walk like a normal person”, that suggests something is not ideal.
    If I understand well, your allopurinol dose has not changed for 2 months. That is a long time.
    Maybe another doctor would have increased your dose without waiting for a test but if your doctor thinks more information is needed before acting, you need to get tested soon.
    Getting your SUA to 5 or below until the symptoms go away sounds like a reasonable target.

    I don’t think I’ve ever taken colchicine daily for more than 6 weeks. I doubt you’d be harmed by taking such a small dose a little longer but I really don’t know. Others have experienced side effects from prolonged use.
    There are alternatives to colchicine if your body needs a break but as I mentionned, the alternatives are harmful in their own way. It’s a matter of balancing risks and I think you need an experienced doctor to do the balancing.
    An alternative to taking colchicine every day is to take it as soon as you start feeling symptoms. But of course that’s not practical as long as you are suffering from constant symptoms.

    in reply to: Gout Seeker Archive #3653
    nobody
    Participant

    Hi,

    Gout is something which ought to be managed with a longer time horizon but until you get serious about that…

    Colchicine and indomethacin do not address the cause of gout but are effective to manage the symptoms if taken in sufficently large doses.
    Watch for side effects getting worse over time. Should that happen to you, you’ll be better off in the long run if you don’t ignore it.

    Outside of drugs, hydratation and blood flow matter. Also, best avoid cold. You ought to drink lots of water (within reason) and relax as much as possible. Support your foot to relieve your muscles if needed but make sure to keep moving your foot regularly. If at all possible, occasionally get your heart pumping with whatever exercise doesn’t hurt your foot or perhaps with hot showers. Some people bathe their foot in hot water which addresses several of the aforementioned concerns.

    Last but not least, people who have untreated gout, aren’t monitoring their liver and kidneys and take drugs such as indomethacin should be very careful with alcohol.

    in reply to: Mini gout flare whilst on Allopurinol #3652
    nobody
    Participant

    Hi,
    Curing gout is typically painful but it needn’t be that bad.
    I wonder if you might suffering needlessly because of the dosing of the drugs you take. More on that later.

    Diagnosis over a web forum is basically impossible and I can’t tell you what’s normal because everyone is different (you’re much younger than most gout sufferers, my SUA was never as high as yours used to be and so forth). But in answer to your questions:
    -connections between gout and both recent and old trauma (the trauma need not be major) are possible
    -it doesn’t seem uncommon to experience ongoing serious symptoms over several weeks when initiating ULT

    You haven’t explained all your circumstances or the rationale of your doctor for prescribing the doses you’re taking but assuming you do not have unusual conditions or drug intolerances…
    -this might be controversial but while guidlelines in many places would have you target a SUA below 6 with ULT, my opinion is that the target should be lower inasmuch as you are experiencing serious gout symptoms. On top of that, have you established how much your SUA typically varies? You aren’t testing it very often and for all you know it might be well above 6 most of the time. The lower your test results, the larger your safety margin against variations. And the maximum allopurinol dose is much higher than 300mg.
    -0.5mg of colchicine is a much lower dose than 90mg of etoricoxib. I don’t know how large you are but chances are your colchicine dose was insufficient which is why your symptoms didn’t abate completely or came back constantly. Trouble is, if you’ve used colchicine every day for 2 months, now might be the time to think about discontinuing it rather than increasing the dose. The longer you take colchicine, the more pernicious side effects you’ll get (though your dose might have been low enough to mitigate that). There are alternatives to colchicine but they have their own issues.
    In other words I think you might benefit from an appointment with an experienced rheumatologist who could review your medications.

    The following is only an anecdote but when I started pharmacological ULT for real, I was initially testing every 2-3 weeks and got a result well under 4 the second time.
    Not that I recommend you actually try to get your SUA that low. But 6 is probably still too high for your deposits to dissolve fast enough to spare you unnecessary misery (though that might depend on the temperature, your diet and the amount of water you’re drinking, how good your body is at excreting UA and so forth).

    in reply to: Gout or not? Tricky Gout Diagnosis #3645
    nobody
    Participant

    Hi,

    While 4.4 and 5.6 are equally close to 5, they are very different numbers when it comes to gout.
    I don’t think you can absolutely rule out gout based on blood tests. It’s possible you might be suffering from gout even if you test under 5.6 twice in a row. But I guess gout would be a good bit less likely if your results averaged 5.4 rather than 5.8.
    If your doctors aren’t sure what you’ve got, you might end up getting joint fluid tested as well as blood.

    The followin sounds bad: “i didn t eat for a week,can t sleep. i m very stressed.”
    And without losing sight of the importance of getting a good diagnosis, I also think more could have been done to help you with the symptoms.
    I think you should try to eat right even if you don’t feel like it. You can make gout worse by not eating enough for too long.
    You might also want to seek help specifically about the stress and insomnia even if these are only secondary symptoms because you’d have benefitted from sleeping more and being more relaxed regardless of what caused your distress.

    in reply to: Allopurinol Dose Change, Pain Location Change #3626
    nobody
    Participant

    Here are DQ’s latest results (so far as I know):
    mid-January: 555
    mid-March: 388
    mid-April: 336
    They were all done while allopurinol dosage was being increased and DQ is now taking even more than in mid-April.
    I’m a bit of a blood testing skeptic so I don’t think you can avoid the ifs and maybes. That said, DQ is arguably not getting tested often enough considering the pace of the dosage adjustment.

    Regarding drug vacations, couldn’t they be managed based on blood tests instead of ridiculously expensive DECT scans?

    in reply to: Gout Attack Severity and Duration with Epsom Salt #3622
    nobody
    Participant

    I’m replying here in order to leave the other thread unanswered.

    You asked: “It seems as if crystals in the whole area are dissolving? Can that be the case? Or do you think this may be a side affect of increasing my allopurinol to 400mgs?”

    I can’t know what’s going on in your body.
    One can imagine several processes which could cause something like that to happen. You could conceivably for instance temporarily get UA re-crystallization following the dissolution of a large deposit. But allopurinol side effects wouldn’t be at the top of my list, unless of course by “side effect” you mean dormant UA deposits being disturbed.
    I don’t see much point in overthinking this. If your symptoms are arthritis (I can’t tell based on a forum post) then time is on your side. You have lowered your blood UA and you knew this might temporarily trigger more frequent bout of arthritis. And in case you didn’t know, it might give you arthritis at the weirdest locations too. That is what curing gout feels like. Summon some patience, make sure your muscles aren’t tensed for long periods due to pain or posture (your salt baths ought to be good for this) and relax.
    As I mentionned earlier, in my thinking you can assess the effectiveness of a UA-lowering intervention by looking at the average duration of your symptoms. If most of your symtoms go away quicker than they used to, you are on the right track no matter how unusual the symptoms are.
    If on the other hand you think you might have something other than arthritis such as an infection (do you have a recent wound near the affected area?), consider seeing a doctor.

    in reply to: Gout Attack Severity and Duration with Epsom Salt #3492
    nobody
    Participant

    Yes, if your test results are temporarily elevated that implies they are expected to go down in the future… two ways of saying the same thing.
    Variations are to be expected but the average daily mass of dissolved crystals should diminish over time which is why you can expect your UA to trend downwards.

    I hope you’re experiencing pain from exercising injured and under-used muscles and tendons rather than arthritis.
    But exercise might cause more crystal deposits to dissolve… which isn’t what you want right now because your system is apparently already struggling with the UA from deposits dissolving on their own. If too many crystals dissolve at the same time, you risk a serious attack.
    Once you are mostly free of serious symptoms, you may want to speed up the dissolution of the remaining deposits with exercise. Until then, be careful.

    If you can’t take colchicine, what about oral methylprednisone or similar?
    I assume you are aware that the side effects of ibuprofen and naproxen add up.
    If this class of drug (NSAIDs) is the only thing you can take for symptoms, I guess that would warrant taking a bit more allopurinol initially than someone who is able to take any drug.

    I hope Keith will answer your questions because we do not always agree.

    in reply to: Gout Attack Severity and Duration with Epsom Salt #3484
    nobody
    Participant

    Diminishing returns: there are limits to how fast this ‘debulking’ can happen. It’s not only about how much UA you have in your blood.
    The main point of getting your UA lower than it needs to be is to make your flareups shorter and less severe.

    UA blood tests: you haven’t done enough tests to get a decent picture of what’s going on but to the extent you are ‘debulking’, all tests will be biased high. If you’re already taking more than you need to (obviously I can’t know whether that is indeed the case), your test results will trend down even if you do not increase the dose further.

    in reply to: Gout Attack Severity and Duration with Epsom Salt #3479
    nobody
    Participant

    What I meant was: if you stop getting long-lasting pain.
    I don’t know that you can tell how much solid UA is left based on symptoms. But my thinking is that the average pain duration is an indicator of where your blood UA is at relative to your needs. Even if blood tests were perfectly reliable, the amount of UA in your blood is only part of the story of crystallization.
    I understand increasing your dose is tempting but I’d make sure it serves a useful purpose before taking chances. At some point you’d experience diminishing returns anyway. I don’t know if that’s where you are already but I would certainly stop taking a larger dose than necessary once I felt safe from long-lasting pain. And the faster you’ve increased your dose, the quicker the dose required for you to feel safe ought to diminish.
    That said, I wouldn’t drop my dose as soon as pain subsides. Think weeks, not days.

    The strangeness involved in calling myself Nobody is deliberate. If you don’t like strangeness, you could use Tawrikt for instance.

    in reply to: Uric acid 6.6. Do I have gout? #3442
    nobody
    Participant

    6.6 is not very high but definitely high enough that gout can not be ruled out. Normal or abnormal doesn’t matter. A single borderline test isn’t definite anyway: if you were tested again, results might be a bit higher or a bit lower.
    Gout can not be diagnosed based on a forum post, sorry.

    In case your pain and swelling go away, consider getting tested again. In addition to uric acid monitoring, there are other blood tests such as ferritin which might give extra clues.

    in reply to: Gout Attack Severity and Duration with Epsom Salt #3441
    nobody
    Participant

    Even muscles can take a while to heal and de-atrophy.

    Low blood UA + blood flow ought to dissolve crystals.
    But be aware that as your crystals have evidently already been dissolving, your blood UA has only one way to go as you get rid of them: down. Unless you’re going back to alcohol or something, your equilibrium UA on your current dose ought to be a good bit lower than anything you’ve experienced so far.
    Even if you haven’t experienced side effects and your blood tests show no stress, the higher your dose, the more chances you’re taking. So don’t overdo it, especially if from now on you only get pain that goes away on its own within a few hours to a day.

Viewing 17 posts - 647 through 663 (of 696 total)