nobody

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  • in reply to: Nutritional yeast flakes #5077
    nobody
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    Dairy and cheese naturally contain B12 but are obviously not vegan foods. I’m not aware of any safe vegan food naturally containing significant amounts of B12.
    For instance it seems the B12 in nutritional yeast (when present in signifiant amounts) is typically added during processing. If that is indeed the case, straightforward B12 supplements seem like a better choice anyway.

    in reply to: Febuxostat and Colchicine Dosing for Gout #5076
    nobody
    Participant

    I know very little about vitamin E.
    It’s not crazy to think that vitamin E might help but my doctors have recommended against this type of experimentation (vitamin C would also have been worth trying), reasoning that the aggressive supplementation likely required in order significantly impact on my UA would involve uncertain side effects, making this approach riskier than xanthine inhibitors (not to mention less reliable).
    Moderately improving my vitamin intake on the other hand (for instance by eating a bit more of the relevant foods) was naturally OK’d (but without any hope that it would have much impact on my UA).
    Your special condition might make the risk/reward of experimentation with large amounts of vitamin E more appealing though. Just make sure the risks are carefully assessed and the potential downsides monitored.

    in reply to: Allopurinol makes me drowsy. Should I take it at night? #5056
    nobody
    Participant

    Others know allopurinol much better than I do but since nobody else answered… if you have no particular health concern and you haven’t specifically been told not to take it at night, I don’t see why you couldn’t try.
    If you’ve been tired since you’ve started allopurinol, you should discuss that with your doctor and make sure your health is being thoroughly monitored. The drug could conceivably be affecting you in a dangerous way.

    in reply to: Nutritional yeast flakes #5055
    nobody
    Participant

    Plants are safe for you but yeast isn’t. It doesn’t mean you have to exclude yeast from your diet entierly but it means you have to be careful.
    The main thing you have to watch is the amount you eat. If you eat a very small amount for the vitamins, that’s one thing. But it’s dangerous to use a protein source, a substitute for cheese or something like that.
    Some (and possibly all) varieties of yeast have extremely high purine content (it’s nothing like the stuff you were worried about like chickpeas) and have been shown to markedly raise uric acid in humans. So you should assume yeast products to be dangerous unless proven otherwise or consumed in very small amounts. The same goes for any other product made out of single-cell organisms (such as spirulina).
    If the yeast is merely killed (which is what I assume “deactivated” means), that wouldn’t help. But yeast could in principle be processed in a way that gets rid of the dangerous part. B12 extracted from yeast is safe for instance.

    Now since you are taking allopurinol, you could in principle safely consume otherwise dangerous amounts of yeast. You’d simply have to take enough allopurinol.
    The trouble is figuring how much allopurinol would be needed. If you consumed more or less the same amount of yeast every day, it would be straighforward: get a blood test and increase your allopurinol dose if it shows an unsafe uric acid level.
    Which is to say that if you had already been taking yeast before your last blood test, the amount you were taking before the test is safe as long as you keep taking the same amount of allopurinol (or more). If you planned on eating a lot more yeast than you used to however, you might need to take more allopurinol.
    In my opinion though, you shouldn’t need a drug to make food safe. You never know what effects that would have on your body in the long run. Best eat something else.

    in reply to: Febuxostat and Colchicine Dosing for Gout #4958
    nobody
    Participant

    If pain is still a problem for you, again, ask your doctor about proper painkillers. Pain relief doesn’t have to be complicated.
    I’d be more concerned about the damage inflammation is doing than pain but sometimes, pain relief is indeed what you want. Clearly, you wouldn’t be using it to defer treatment.

    You have a (so far as I know) rare condition so I wouldn’t be reassured by numbers such as 0.1%. These numbers are often dodgy but in any case they are relevant to people who have no special health concerns.
    But yeah, I would assume the main risk for cochicine would be if you took it regularly for quite a long time.

    I’ve never been told to abstain from cheese or milk due to liver issues but it’s easy to eat too much cheese and common sense tells me it can’t be easy on the liver.

    I have no idea how long you can store cut pills. I’ve been cutting them one pill at a time just in case.

    I’ve been trying different febuxostat doses. For what it’s worth, I got SUA readings at 4.3-4.4 while on 20mg. But you should need more of the stuff to get there so depending on your subjective experience and test results, I’m not sure it’s best to keep taking only 20mg for so long (though four weeks is what was recommended in the document I quoted to you a few days ago).
    More relevant to your situation than my test results are studies. Here’s one: after 16 weeks, 46.5% of patients on 20mg had a SUA at or under 6 against 2.6% of the patients on placebo and 82.9% of the patients on 40mg.

    in reply to: Is 300mg Allopurinol Dose best for Gout? #4941
    nobody
    Participant

    Almost anything could potentially be triggering.
    Log your flareups into a notebook along with whatever you ate before. Then make yourself wait until the same food or food type shows up many times in your notebook before getting your imagination and logic on the case of any particular food.
    Such a joint trouble notebook, with dates and all, might contain information useful to a doctor if your symptoms don’t end up going go away. Or you could use it yourself to see if your flareups are getting less frequent over time.

    in reply to: Febuxostat and Colchicine Dosing for Gout #4940
    nobody
    Participant

    Stopping pain need not take 3 hours. Just take enough proper painkillers. But of course pain isn’t the issue…

    In my opinion, you should have tested colchicine earlier. Besides the issue of febuxostat and colchicine independently stressing the liver, possibly colchicine would interfere with your haemoglobin production. So I would have thought your blood specialist would be the one you’d talk to about colchicine rather than your rheuma.
    One option would be to do without colchicine until the effect of febuxostat alone on both your liver and haemoglobin is establised.
    If you’ve tolerated NSAIDs in the past and your liver function tests haven’t shown any signs of stress, I would think NSAIDs would be safe for you to take along with febuxostat. An advantage of NSAIDs over colchicine in my opinion is that you can wait until you get an attack to take NSAIDs while colchine works best if you take it ahead of time. So you needn’t take NSAIDs every day.

    I’ve already told you what my rheuma recommends w.r.t. colchicine. And you don’t want to take anywhere as much since you’ve never tried the drug, much less done a blood test while taking it. As with most drugs, small doses are best until you know for a fact your body can handle the stuff.
    Colchicine vs. NSAIDs didn’t come up with my rheuma because colchicine is obviously much safer for me (as well as for the thousands NSAIDs send to an early grave every year). Iron Stomach here seems to do fine on NSAIDs though and he’s not the only one. So really, your experience and blood tests ought to be what guide you in this matter.

    Now, about how long to take 20mg. I would say: until the results from your first blood test come back. If your liver and haemoglobin seem OK and no other red flag is raised, increase the dose. Obviously, that’s assuming you’re not experiencing serious side effects.
    I should stress the following though: testing normal or abnormal is irrelevant. If your liver function tests are elevated compared to your other tests for instance, they would likely become worse over time even if you didn’t increase the dose. Don’t wait until your test results actually get bad enough to raise a red flag to act on any information they provide. The same goes for haemoglobin.
    Also note that elevated ALT is expected. If it’s the only liver function test that’s outside your usual range and if it’s not ridiculously high, I wouldn’t worry about it. Febuxostat will affect the other tests as well if you take more than your liver can handle.
    I’m not sure what you mean with “I’ll see a dramatic drop afterwards”. The full effects of febuxostat on both uric acid and liver will take more than 2 weeks to become clear. I’m guessing the same goes for haemoglobin. But you don’t need to know the full effects to see where the values are going.

    If you’re going to try to cut these hard pills with a knife, the following may sound obvious but the force is going to make the fragments fly orthogonally to the blade. So use some obstacle or container to collect them or the dog will find the fragments before you do.
    With some cutting tools, you can safely cup the pill with one hand while the other is applying pressure.

    in reply to: Febuxostat and Colchicine Dosing for Gout #4920
    nobody
    Participant

    Congrats! You’ve found a doctor who seems to have a clue about febuxostat.
    You can’t cut Adenuric pills to 20mg precisly by yourself (or at least I wouldn’t know how to do it). Some pharmacists ought to be equipped for this but the service may be expensive and my rheuma said imprecise cuts are fine. You can cut to approximately 20mg without a pill cutter. Some (most?) pill cutters are actually worse than kitchen knives for this job. I use a tool not designed for cuting pills. You want a sharp, straight blade such as a razor blade and you want to be able to apply significant pressure.

    About 1mg colchicine daily being consensual… well, I simply mean that this is a dose which would get recommended to you by different folks in many places. Like there’s a consensus on the matter.
    The dosage to deal with acute attacks is another matter. I’ve been given different instructions, all different from the ones you’ve just been given.
    Regardless, I agree you should be getting better after 3 days on 2mg colchicine. In fact it would be mighty disappointing if you weren’t better a good bit sooner.

    The problem with not having a blood test done while on colchicine only is that you won’t be able to tell the effect of colchicine and febuxostat apart once you start the latter. Yes, both affect the liver. But then so do NSAIDs. And like I said, in my case NSAIDs are worse than colchicine. But you won’t know for sure which is worse in your case if you don’t get blood tests.
    It would be a good idea to try some colchicine pills before going on febuxostat to see what side effects you get and understand how they work. But to get an idea of what 1mg daily over a month (or more) would do to your liver, you’d need to be taking the stuff every day for at least 10 days before getting a blood test I would think.
    I forgot something else which may be dangerous liver-wise by the way: mushrooms. If gathering mushrooms is popular in your area, consider not eating that for a while. Professionally-grown mushrooms ought to be safer.

    Now about going on febuxostat without taking a prophylactic daily… like I mentionned, that’s what I did and I got away with it. But your uric acid problem is a good bit worse than mine. It seems like it’d be risky in your case. But your experience with allopurinol ought to be the best guide as to what you can expect. Just be aware that febuxostat is very roughly 10 times stronger than allpurinol by weight. So even 20 mg daily would be a more brutal ULT than your initial allopurinol dose.

    in reply to: Febuxostat and Colchicine Dosing for Gout #4912
    nobody
    Participant

    1mg daily is a pretty consensual colchicine dose actually.
    The controversy is about what dose to take when dealing with an acute attack. I think it’s obvious that it should be a good bit more than 1mg if you hadn’t been taking colchicine previously considering that the stuff is going to build up in the body if you take the same amount daily.

    I recommend you try colchicine before taking febuxostat if you’re going to use it because you don’t want to be testing two unfamiliar drugs at the same time.
    Ideally, you’d have a blood test on colchicine alone (or colchicine + NSAID if that’s what you’re planning to take) prior to starting febuxostat so as to avoid blaming the wrong drug for abnormal test results.

    About febuxostat, I’m going to go into paranoid mode since you seem to have had trouble with pharma before…

    The most important thing to understand in my opinion is that even in the UK, doctors are often subject to local profiteering biases. In the case of febuxostat, this can lead to improper dosing. Yes, I did recommend against starting with more than 40mg. But I did also recommend starting with less, didn’t I? In case you didn’t get it, I’ll lay it extra thick for you…
    I don’t think you should consider 40mg as a mere starting dose. I doubt you’ll have a use for 80mg except possibly as a way to make you sick. And if it turns out you get nasty side effects at 40mg, it wouldn’t mean febuxostat is not for you because it’s not a given you couldn’t acheive an adequate SUA with a lower dose, especially with dietary support. The way your system reacts to the stuff will of course trump all prior guesses…
    Here’s a quote you might find interesting: “The usual adult dose is once daily orally starting from 10mg. Thereafter, increase the dose gradually as needed while monitoring blood uric acid level. Usual maintenance dose is 40mg once daily. Dosage should be adjusted as needed according to the patient’s condition. The maximum dosage of febuxostat is 60mg once daily.” This was as you may have surmised not issued by the profiteers who saw fit to make ridiculously strong (and therefore expensive) pills and to make a show of marketing them at patients who got insufficient SUA reduction from inadequate allopurinol dosing (or for want of an uricosuric) rather than at the patients feubuxostat was designed for and who actually need to buy these pills.
    If you decide to cut the pills smaller than they were designed to be cut, precision is not critical.

    Other than that…
    Don’t be panicked by initial side effects, especially if you go straight to 40mg from zero. Your body will need to adjust and there are ways to mitigate this type of side effect. The one type of side effect I’m aware of which might warrant stopping the drug immediately is an allergic-type reaction such as a rash. I would also consider stopping the drug pending testing in the event of cardiac side effects.
    Don’t be disappointed if your SUA doesn’t drop immediately. You should get a large drop fairly quickly but it would probably keep dropping for several weeks without a dose increase.
    I would recommend you initially avoid alcohol as well as other non-essential drugs or anything else which might upset your liver such as fatty meals until you know for sure it’s coping well. That would mean no paracetamol/acetaminophen… if you have no alternative on hand, consider asking your doctor about painkillers which do not hurt the liver before an acute attack gets you, stressing the temporary nature of the situation. For what it’s worth, colchicine is easier than NSAIDs on my liver.

    If you’re going to have a baseline blood test, you could add bilirubin, TSH, CPK and blood urea (some of these may already be planned but unlike ALT and so forth, they are not routinely done here) which are known to be affected by febuxostat in some cases. Urine tests may also be affected but unless you have kidney concerns, it’s probably not worth the bother to baseline that.
    You might also want to initially monitor your blood pressure, cardiac rythm, frequency of bowel movements, appetite and weight. Febuxostat can (if indirectly) affect them all and simple changes might provide useful clues. Occasionally monitor your skin and eyes color as well. Possibly there’s something else you are equipped to monitor on your own.

    in reply to: Why colchicine with Allopurinol and Indomethacin? #4911
    nobody
    Participant

    Other situations in which you might want to take colchicine while you know you could experience an attack at any time:
    Say you’re planning a business trip and you realize that an attack right before or during that trip would be extremely inconvenient. Take colchicine a few days before and during the trip.
    Say you’re planning to do something which has triggered attacks before such as a bit of trekking. Take colchicine from the day before to the day after.
    You get the idea. Just because you don’t need a prophylactic every day doesn’t mean you never need it.

    You might also use colchicine if you are afflicted with a persistent attack which indo can’t seem to quell fully or a seemingly unending series of short attacks.

    in reply to: My Gout Attacks won’t Stop despite Allopurinol #4906
    nobody
    Participant

    Good news about your test reults. A 3-6.5 range would have been strange!
    Possibly the confusion was caused by mixing units. If your range has indeed been 3.8-4.5 mg/dl (as opposed to 380-450 umol/l for instance), you have been on your way to recovery for a while. But maybe your recovery would be quicker with stronger medication…

    I don’t know if Uloric is right for you. I take it myself so I’m not saying it’s a bad drug but it is dangerous. So is allopurinol but we know your body handles allopurinol and it might possibly do better with a larger allopurinol dose than with Uloric.
    One of the things which makes Uloric dangerous is that doctors often don’t know why or how it should be used. I guess it makes sense in your situation to follow your rheumatologist’s advice and switch to Uloric. But there’s no sense in being reckless about the switch.
    Firstly, when starting Uloric it is very important to get blood tests to monitor your liver function in particular. Second, you don’t need to start with 80mg which is a very strong dose. It would be safer to start with a lower dose for a couple of weeks, get a blood test and increase the dose if the test raises no red flag. People have started with doses as low as 10mg but I guess that would be impractical in your case. Lots of people start with 40mg (there are 40mg Uloric pills) but if you wanted to play it safe, you could try to cut the pill in half in order to take 20mg for your first few days on the drug. Just don’t start with 80mg.
    It’s also best not to start another drug at the same time as Uloric so it would make sense try colchicine first and see if it gives you a break from your serial attacks as well as what side effects you get (if any).

    I don’t know if a diet consisting of “veggies fruits yogurt milk” is safe and sustainable in your situation but at least you can get the proteins you need from yoghurt and milk if you consume large amounts and are able to digest them. Most people would benefit from adding other types of plants such as cereals to that diet however. That way, less dairy would be required.
    Your are probably going to be suffering from these joint problems for a while still so you need well-considered and sustainable solutions.

    in reply to: Will Malic Acid help my Gout? #4896
    nobody
    Participant

    There’s not enough data yet to know if malic acid is doing anything in your experiment because pain is not a reliable indication to what’s happening except in the long run (and even then, it’s not precise).
    In the meantime, your test result suggest your uric acid level is dangerously high. Possibly malic acid prevents crystallization but since we don’t know that it does, you are taking chances by volunteering to be a guinea pig.
    Since you are doing experiments, thanks for having posted your data! Maybe be it’ll help someone.

    in reply to: Febuxostat and Colchicine Dosing for Gout #4895
    nobody
    Participant

    My tablets are 1mg. I usually take halves as I prefer spreading the intake over time but have many times taken a whole tablet without issues (mostly as an emergency measure).
    I’ve taken different amounts. It depends on the situation. I have no fixed rule other than: no more than 1 mg every three hours.
    Now I’ve never kept taking that much past the second full tablet and I might split that second tablet depending on how the symptoms evolve. Part of the reason I start cutting my intake at that point that is significant side effects supposedly suggest the dose was excessive and I know I’ll get side effects later if I push it further. But over the course of a whole day, I’ve taken more than 2 mg.
    There might be other reasons to take less: if I had already been taking lower amounts as a prophylactic (the stuff can build up in the body), if I was already struggling with the side effects of a different drug, if I didn’t have easy access to a toilet and so forth.

    I generally avoid NSAIDs as I tolerate colchicine way better but I would take a moderate NSAID dose on top of colchicine if I had a really bad attack. If I took that NSAID however, I wouldn’t take so much colchicine.
    My doctors are concerned about drug interactions. Perhaps that’s only because they know I’m prone to serious side-effects. For instance when I started my current ULT I took neither colchicine nor NSAIDs for a while out of concerns about interactions and that is not what most patients do.
    While I’ve used low-dose NSAID along with prophylactic-dose colchicine, my serious attacks have been few and far between since I’ve been taking colchicine and I never tried to use an NSAID along with a large colchicine dose. The one time I was tempted to do that was the first (and only) time I took a large colchicine dose while on febuxostat and I was reluctant to mess with that experiment by adding in another source of side effects.
    I also never tried throwing alcohol into the mix. I don’t drink anyway but I’m just mentioning that as a warning since lots of people do and interactions aren’t only between pharmaceuticals.

    Has your hemoglobin been improving by the way?

    in reply to: My Gout Attacks won’t Stop despite Allopurinol #4864
    nobody
    Participant

    I’m going to be brief because the forum software threw away my reply (that’s what it does when a post is moved).

    You shouldn’t starve yourself. It won’t help your gout.
    In particular, you need proteins. If you’re avoiding meat you need to eat lots of dairy. That or a combination of bean-type and cereal-type plants.
    Even if you’re trying to lose weight, you should do it slowly and sustainably. A diet which would kill you within months if you stuck to is nowhere near sustainable.

    It would be best if you could get your uric acid test results in writing. You need to know what your typical level has been since you’ve been taking allopurinol. It would be odd if it really varied between 6.5 and 3.

    in reply to: My Gout Attacks won’t Stop despite Allopurinol #4840
    nobody
    Participant

    6.5 mg/dl is definitely too high.
    In addition to what DQ just said, in case there is a reason why more allopurinol might be dangerous for you, there are other drugs you could take either instead or on top of allopurinol.
    Going by what you said about your tophi, you might be one of the gout sufferers who would benefit from very aggressive medication. There is evidence that having very low amounts of uric acid in one’s blood benefits people who have sizable tophi. In any case, 6.5 would be too high even if you had no tophi. Possibly it was an anomalous test result but I wouldn’t count on that.
    So I would very much encourage you to broach the topic of more aggressive medication with your doctors. And don’t let them brush off your concerns!

    You could also try more dietary changes but I think getting more appropriate medication should be your priority right now.

    in reply to: Gout pain finally gone, but swelling persists #4833
    nobody
    Participant

    I’ve spent many years with SUA in Big’s range (something I wouldn’t recommend if you can avoid it!).
    Sure, “stretching joints can sometimes in itself cause a gout flare”. I experienced this myself. But from there to wait for 6 months without attacks to deal with limited range of motion? Really?
    The first problem with your recommendation is that Big isn’t on ULT and ain’t likely to get rid of their symptoms anytime soon. And I’ve been told leaving a joint in this condition too long might cause irreversible damage (then again I’ve been told my share BS over the years).
    Second, stretching is in my experience most dangerous in two cases:
    -if the relevant joint is still swollen and painful (even if the pain and swelling are way down)
    -if I do weight-bearing stretching
    I’ve spent quite a few years dealing with this and haven’t triggered a serious attack by gentle, non-weight-bearing stretching after the inflammation of the relevant joint was gone (or very nearly so). I don’t mean attack-free because other joints may be affected. And by “after”, I mean as quickly as a few days after I was left with mostly painless loss of range (and sometimes redness).
    But of course our bodies work differently so everyone has to carry out their own experiments to see what they can and can’t handle…

    in reply to: Gout for 30 years getting worse #4832
    nobody
    Participant

    Hi Colin,
    It would be reckless not to try to get the root cause of your problem under control. Just ask yourself this: how do you think you’d fare without ibuprofen? Maybe you’ll be able to take ibuprofen for the rest of your life. But it is a dangerous drug to take on a regular basis. Maybe you’ll have to cut down or even quit at some point down the road. And then what?
    We don’t know that you have gout but if you do, chances are you won’t be able to fix it by tweaking your diet. One problem is that the foods which trigger the pain are not always the foods that actually cause the problem. So you could make your problem more bearable while it keeps slowly damaging your body.
    I strongly recommend you see a doctor, do the testing they’ll put your through and get a solid diagnosis. You won’t have to take medication just because you have a diagnosis. The point is to stop wasting your time and to obtain solid information about the problem you have and the solutions. This thing is, finding a good doctor who understands the type of thing you’re going through may not be easy.

Viewing 17 posts - 562 through 578 (of 696 total)