nobody

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  • in reply to: Febuxostat and Colchicine Dosing for Gout #4241
    nobody
    Participant


    The issue isn’t whether colchicine technically has any anti-inflammatory effect (as opposed to a pro-anti-inflammatory effect?) but whether 1mg/day does indeed “stop/slow inflammation spreading”. In my experience, it does not do so in a timely fashion.
    In any event, it’s obvisouly not going to have the same effect as ibuprofen-type drugs.

    in reply to: Febuxostat and Colchicine Dosing for Gout #4210
    nobody
    Participant

    This was more of an overconfident-after-a-while-on-ULT attack… assuming it was gout (got no tests done seeing it struck during the week-end). Haven’t been through something this nasty in years.
    I did more “hardcore” ULT than you. But you know how the time it takes for the old crystals to clear seems proportional to the time you’ve had high UA or gout? Well, in light of that I should have been more careful.

    Correction: with your hemoglobin so low that it’s got one less digit than mine, I messed up my unit conversion above. Febuxostat (which I’m still taking) might have caused my hemoglobin to fall by about 1 (something like 6%), not 0.1 (which is nothing).

    in reply to: Febuxostat and Colchicine Dosing for Gout #4205
    nobody
    Participant

    Having been blindsided by a flareup in the big toe, I was simply in pain. Like I said, no biggie.
    Not much of a smartphpone user myself. I use mine like a dumbphone with a better keyboard and I rarely allow the thing to disturb me. I guess that makes me a weirdo.

    Good to know your hemoglobin stopped falling. Looks like it really was allopurinol.
    For what it’s worth, my hemoglobin dropped a bit after a while on febuxostat (about 1 g/dl, more than the usual variations but a good bit less than the drop I got from minor abdominal surgery for instance) but it might have been an odd coincidence. I don’t get that tested often. But in the data I’ve got, I didn’t notice any effect from colchicine on my hemoglobin.

    When using it after a serious attack has started, 0.5mg cochicine doesn’t do much (if anything) for me. I guess two such pills a day would be helpful to prevent the attack from coming back or lasting weeks though.
    Whether small doses would work better for you, I can’t say. Small doses might also work well in combination with naproxen. You’ll have to try.
    And I don’t know the impact colchicine would have on someone with your blood problem. But as far as the general population is concerned, 1mg/day colchicine is very far from the maximum dose. It’s nothing like 80mg/day febuxostat.

    in reply to: Febuxostat and Colchicine Dosing for Gout #4200
    nobody
    Participant

    Right now I’m not doing too well. No biggie but I’m wasting more time online than usual.
    Is your hemoglobin situation improving?

    Cochicine is kind of a puzzling drug to begin with. And the dosing recommendations are all over the place. You’ll have to experiment and weigh the risks for each situation.
    As with any unfamiliar drug, go easy at first and watch for interactions with other drugs you’re using or unusual conditions you’re suffering from.

    Maybe because I’m large, I haven’t had a good experience taking 0.5mg/day. I’d rather go 1mg or alternate between 0.5mg and 1mg.
    To attempt to speed up the resolution of a serious situation without NSAIDs, the MINIMUM dose I’d use is 2mg. No more than 1mg every three hours though, as per the doctor’s instructions. I would then progressively lower the dose over the following days (unless perhaps the symptoms actually got worse but that’s a situation I have yet to encounter).

    in reply to: Home test kit UA variations #4179
    nobody
    Participant

    Hi,
    I don’t know if all doctors would say the same thing in your country but this “more than 4 attacks a year” thing isn’t a good way to decide if allopurinol would be helpful. Testing your uric acid on the other hand, now that would be the first step in making a decision about allopurinol.
    About your home testing: you won’t get the full effect of the food you eat within 90 minutes. In my opinion, changes throughout the day shouldn’t be your guide and you should try to measure the effect of any changes over several days minimum. Exercise for instance might cause an immediate increase in the amount of uric acid in your blood but that doesn’t mean moderate exercise would increase the amount of uric acid in your system in the long run. But my opinion is irrevelant: whatever works for you in the long run is good.

    in reply to: My Story about gout and stopping allopurinol #4174
    nobody
    Participant

    re “How will I know when all the old desposits have been elminated?”:
    It’s guesswork. The timeframe we’re talking about is about 6 to 24 months. You need to make sure the symptoms are gone for good and, because you’ll probably get less frequent symptoms before they go away completely, you’ll only be able to tell in retrospect when they finally stopped. It’s probably best to keep taking the drug at least a few months after the symptoms have stopped completely anyway because you don’t feel every deposit.

    If everything is fine, you don’t need to have a blood test every month. But 6 months is a long time. At some point you may want to try to lower your dose for instance and at that point, you should get tested both before and a few weeks after you change the dose.

    in reply to: Gout or not? Tricky Gout Diagnosis #4128
    nobody
    Participant

    You are asking difficult questions about stress and genetics.
    What we know is this: if you have gout, it is because there is too much uric acid in your body. We don’t know why exactly. And solving the problem usually takes several months (and sometimes more).
    Taking Milurit for several months should lower your uric acid long enough for the pain to stop. But since you are only taking 100mg Milurit daily, you also need to be careful about what you are eating. You doctor told you to avoid some fishes, meat soup and organ meats like liver so chicken breast is allowed. You are right to eat only small portions of meat.
    Future blood tests will tell you if you are taking enough Milurit and being careful enough about what you eat. If the blood tests show uric acid at 5 or less several times but the pain does not stop, the cause may be something other than gout.

    You also need to understand this: not eating meat and taking Milurit does not stop gout pain immediately. Gout pain may stop and start again many times and it may be very difficult to understand why.
    So for several weeks or months, you may also need to use an anti-inflammatory drug such as Aflamil to stop the pain.

    If you see another doctor in Luxembourg, bring the results of all your blood tests along with the precise dates when you started and stopped Miluric.

    in reply to: Gout or not? Tricky Gout Diagnosis #4124
    nobody
    Participant

    Hi again Rich,
    I don’t think we can replace a doctor. If you’re not satisfied with your current doctor, you should try to find another one.
    If you indeed have gout, I don’t think taking a small dose of Milurit for 20 days will be sufficient. But since the amount of uric acid in your blood is fairly low, I guess it makes sense to learn what you can achieve by dieting. Only your doctor can tell you what their plan is but the more you learn from blood tests, the better equipped you will be to make decisions in the future.
    If you want a faster cure, perhaps you could ask your doctor if you could safely take 200mg Milurit for 3-6 months.

    in reply to: My Story about gout and stopping allopurinol #4123
    nobody
    Participant

    Since you’ve gotten no answer yet, here’s my opinion:
    You’ve already tried a drug which would likely be sufficient to cure your gout. You’ve so far as I know experienced no severe side effects (were routine liver and kidney function tests carried out as is generally recommended?). So why don’t you stick to that drug until your gout is cured?
    Maybe you won’t have to take that drug for life. But you very likely are in for a world of pain if you don’t take such a drug until you are cured. What you may not realize is that for years uric acid has formed solid deposits in your body. They are not detected by blood tests but they are what causes gout and other problems. You will need get rid of them and that takes time.
    Losing weight, eating well and so forth is great. But curing gout that way is at best a slow process. You may not even know if you’re making progress because the deposits will cause frequent gout pain and erratic blood tests. It would be much easier for you to start from a clean slate after having eliminated your deposits. Then you’ll be able to quit the drug and evaluate the effect of diets and such on the amount of uric acid in your blood while remaining free from gout for a while.

    in reply to: Hemoglobin, allopurinol, and febuxostat (Adenuric) #4114
    nobody
    Participant

    I don’t know whether any effectiveness is lost by cutting the pill but I doubt the effect (if any) is significant. Not that it would matter as we can’t predict precisely how effective a specific dose of the drug would be to begin with. You’ll have to judge the effectiveness of the treatment based on blood tests and/or symptoms anyway.
    Just stick to a consistent pill-cutting routine.

    in reply to: Hemoglobin, allopurinol, and febuxostat (Adenuric) #4056
    nobody
    Participant

    As far as I can tell, the liver effects of febuxostat are actually quite common. Is there anyone reading this who has taken febuxostat without getting a markedly depressed AST/ALT ratio?
    The issue is, are the effects bad enough to warrant discontinuing the drug? Usually that is not the case. But the more you take, the worse the effects are likely to be. Hence pill cutting.
    Note that you can cut the Adenuric half-pills with a sharp knife. It’s not very practical (the fragments are likely to fly away from the pressure required to cut the pill) but it works. And you need no tools or preparation to break the pills neatly in half.
    Also note that some pill cutters do not work well with Adenuric pills.

    About the excretion test, my rheuma says you need weeks without meds to get a clean result.
    But then DQ was planning to stay off the meds for a few weeks anyway. If my hemoglobin was at 55, I would probably want to see the value recover a bit before trying another drug which is known to cause anemia.

    in reply to: Hemoglobin, allopurinol, and febuxostat (Adenuric) #4027
    nobody
    Participant

    Of course you can experiment with doses but I’m pretty sure 80mg would be way too strong. These are dangerous drugs and some of the side effects seem dose-dependent. Don’t risk it.
    Instead, I would rather experiment by starting with less than 40mg (pill-cutting tool required) and seeing what that does.

    The value of a doctor isn’t that they are a storehouse of information which happens to be obviously revelant to your case but that they know about lots of stuff which is irrelevant to most of their patients but which might just be important to you… stuff it would never occur to you to research.

    About the time it takes for allopurinol to be washed out of your system, that may not be the right question because we don’t know what’s messing with your hemoglobin.
    My understanding is that allopurinol proper is eliminated quickly but that it’s turned into some other molecule which has a long half-life in the body. Best look it up instead of relying on my recollections!
    But that molecule might not be the issue either. It could be some more indirect effect that’s merssing with your hemoglobin level… and who knows how much inertia might be involved? If it’s low UA which is inhibiting hemoglobin production, that should recover quickly but if for instance some alteration to your bone marrow is involved, your hemoglobin could possibly keep dropping for a long time. Like I said, I’m clueless about this.
    If testing in 2 weeks seems too short, what about 3? 4 seems kind of complacent if you’re not taking any xanthine inhibitor in the meantime.

    in reply to: Hemoglobin, allopurinol, and febuxostat (Adenuric) #4012
    nobody
    Participant

    I assume that if there are no 40mg pills on offer, it’s because the UK uses Adenuric rather than Uloric. The 80mg Adenuric pills are designed to be easily cut in half.
    That would not be quite satisfactory because someone in your situation might for instance want to try 50mg and you’d have a hard time cutting Adenuric pills to such a dose.

    As to your crystals, I don’t think it’s merely wishful thinking to hope that you might not get an attack right away. What matters is that the stuff that’s been cleaned out of your system isn’t going to build back immediately. So you are now less at risk of a really bad attack than you were earlier.
    Lowering your allopurinol dose seems reasonable to me (else I wouldn’t have suggested it) but especially if you’re going to get tested again in 2 weeks, you’re going to get clearer data if you go cold turkey. The allopurinol you already took is going to remain somewhat effective for a few days to begin with.

    in reply to: Hemoglobin, allopurinol, and febuxostat (Adenuric) #4009
    nobody
    Participant

    Whatever you do, do NOT take 80mg Uloric. That’s pointlessly strong and might make your hemoglobin situation much worse.
    40mg would likely be more than enough and it would be safer to start even lower.

    re: “I may have not tested twice but they have been literally in parallel of each other.”
    Anything with progressive onset might be in parallel. That’s the problem with not testing twice at the same dose. It would be a strange coincidence if it was unrelated to allopurinol but coincidences occasionally happen.
    Sure, anemia is a known side-effect of allopurinol. The thing is, it’s also a known side-effect of Uloric. So is anemia caused by the drugs or by something which both drugs do?
    Now if the problem is indeed serious and if there’s little hope of regular anemia treatments working (they’re not only for iron) or of getting a better diagnosis with further testing, I guess trying Uloric makes sense.

    As to your coin toss, it should come down to what you fear most: gout or this hemoglobin thing.
    In my experience uric acid can climb back very quickly indeed if you still have crystals (and my guess is that you do). But I’m pretty sure you’re not going to end up dead because you’ve not taken xanthine inhibitors for one month whereas I’ve got no idea how serious this hemoglobin thing might end up being.

    in reply to: Hemoglobin, allopurinol, and febuxostat (Adenuric) #4007
    nobody
    Participant

    I don’t think you know for a fact that your haemoglobin levels “have been dropping almost with every increase of allopurinol” because so far as I know you didn’t test twice at the same allopurinol dose.
    Could the problem be dose-independent or possibly unrelated to allopurinol?

    I’m clueless about this haemoglobin thing so unless your doctor has already looked into every possibility, I would look into the following before changing a medication that works:
    -how’s your ferritin doing? could you try an anemia treatment (even if you didn’t change your diet, allopurinol can effect digestion)?
    -is there a known link between allopurinol specifically and haemoglobin levels or is it likely related to low uric acid instead (in which case switching medication isn’t likely to help)?
    -could you simply try to reduce your allopurinol dose first (you may be past the need for 400mg)?

    Also, why wait a whole month to test your blood again if the heamoglobin issue is urgent?
    If on the other hand it’s not urgent, why not stick to your 400mg allopurinol another month and see what happens?

    As to Uloric, it’s obviously newer than allopurinol but it’s been on the market for a while now. Have you looked for published studies?
    In my opinion, one risk factor with Uloric is not related to the actual drug but to the dosage guidelines. Instead of starting patients on a small dose, doctors often tell them to take roughly the equivalent of your current dose straight away. The businesses enjoying a monopoly on the drug in the US and Europe don’t even sell pills designed to allow for smaller doses (or for slightly larger doses should that be required).
    I expect the average Uloric user takes a significantly stronger dose than the average allopurinol user. And if studies showed that Uloric is about as risky as a less powerful allopurinol dose, that would suggest to me Uloric is actually safer.

    in reply to: Can i just do a very restricted banana gout diet? #4002
    nobody
    Participant

    Hi again,
    There are three topics here: allopurinol, uric acid tests and purines.

    About allopurinol, it’s usually recommended to start with a lower dose such as 100 mg and to increase the dose after a week or so if you’re doing OK. I don’t know where your ancestors came from but some Asians do not react well to that drug and lower doses must be less dangerous.
    People often do a blood test after a month of so to see if the dose they’re taking is not stressing their liver and kidneys and whether it’s sufficient to lower their uric acid.
    Allopurinol can also trigger serious gout symptoms so you need to be ready to deal with that. That is a normal part of the process of curing gout. So people often take colchicine or some other drug along with allopurinol during the first months.

    About uric acid tests, lots of factors can affect them so variations are to be expected.
    In particular, exercise, not eating enough and rapid weight loss can raise your uric acid.
    Nevertheless, the fact that you tested so high suggests that your average uric acid level might be higher than previously assumed.

    About purines in your diet, they are not the only factor determining how much uric acid you get. Your cider, bananas and fuji apple (a particularly sweet variety) may have slightly increased your uric acid for instance.
    It’s also a stretch to say cauliflower and spinach are high in purines. They’re only high compared to milk and eggs and you can hardly live on that. If you tried, your kidneys might struggle to get rid of your uric acid and you might actually end up with kidney stones.
    There are foods (mostly some meats and sea products) which have a lot more purines than vegetables and these are the ones which you would do well to avoid until your gout problem is sorted out.

Viewing 17 posts - 613 through 629 (of 696 total)