[nobody]

Hi! Everyone’s body works differently. And “mainly plant-based” could potentially be a terrible diet for gout. But realistically, with such test results and such a long history of gout, drugs are the way to go (assuming the gout diagnosis is correct). Going teetotal during the initial phase of treatment would still be prudent.

[nobody]

I don’t know anything about Down Syndrome and gout.
Obviously you want to be especially careful with potentially dangerous drugs such as allopurinol, especially if your son is not able to give reliable feedback on any side effects he might experience. But I don’t know anything specific which would make allopurinol unadvisable. Frankly, I would be more concerned about what colchicine could do to someone with Down syndrome if they were to take it for too long.

But I can tell you this: you can’t judge whether the steps you took to prevent gout were working or not based on whether or not attacks occurred the next day or even the next month. Indeed, effective treatment often triggers attacks during the initial phase. In some cases it can take years of treatment for the attacks to stop. Since your son has only had gout for a few years, there is reason to hope effective treatment might cure his gout in 6 months or even less. But in a single month? That’s not likely.
Besides rare and expensive modern imaging technology, the best way we have to guide treatment over a reasonable timeframe (weeks to months) is blood tests. The value you want to look at is the amount of uric acid in the blood. I would recommend you look at your own test results as well as your son’s because, if you have gout, it can develop without causing flares for a while and you might end up being sorry you didn’t take more aggressive steps to prevent your gout from festering. If you posted test results here, we could help you interpret them.
Also, the dietary information you used may be wrong. There is a lot of misinformation out there. Not that it matters much: drugs are easier and work much better.

[nobody]

I don’t think dietary changes have much to do with how much liquid or solid UA there is in your tissues. While uric acid is definitely found in significant amounts in solution outside of the blood, I have found doctors to be unaware of the modern evidence regarding crystals. Not that it matters: whether small crystals would show up with expensive imagery or not is irrelevant to your treatment at this stage.
You never know when all the crystals are gone. You can only guess. And I would recommend not lowering your dose immediately after they’re all gone anyway (see the other long thread I posted in recently). In any case, it’s too early to concern yourself with this. You’re clearly not out of the woods yet.

I found the ALT/AST ratio more useful than AST alone though I suppose the absolute value might be important to deal with different issues. Either way, I don’t understand why they don’t test AST. I suppose ALT is the number most likely to become “abnormal” but AST is necessary for a more cogent interpretation of test results (my ALT has typically been “abnormal” even when I didn’t take any drug).
I got one or two high ALP results but that number has been pretty noisy in my case.

You could always take a small bit off a 120mg pill every day instead of alternating. It would be imprecise but you’d still get smaller daily variations. It’s not so much the UA variations which worry me but the side-effects. Maybe this is an unwarranted concern but if our bodies are better able to process a steady dose, that would be one fewer potential cause for these rare but nasty side-effects which might possibly be associated with febuxostat (the evidence is quite weak so far).
That said, my guess is that you’d handle 120mg per day just fine. You could always lower your dose later. But that’s only a guess and high febuxostat does aren’t that well-tested…

I believe I have previously suggested you simply post your email here if you want me to write. Posts can be edited so your email wouldn’t have to stay up forever. Yes, you could set up a temporary email address and add it to your email client (if you use one) or forward it to your main email account (if your webmail provider offers that feature) but I’m not sure it’s worth the bother. I certainly wouldn’t recommend one of these services which requires you to check your email on their website (that’s only good when you know you’re going to get an email right away).
There are of course other ways to exchange information or chat but I don’t suppose you use IRC or GPG for instance.

[nobody]

Hi Rick!
I think you’d need to post more information to get a useful reply.
First, what are the results of your uric acid blood tests? What allopurinol does is to change these values. Without knowing them, we can’t guess how badly you need a drug such as allopurinol.
Second, you seem to have had trouble with some drug. It’s not clear from your post that allopurinol was the problem however. Colchicine is well-known for causing diarrhea regardless of what other drugs you take and you don’t need to take it alongside allopurinol. Furthermore, Prilosec is normally given to counteract the side-effects of drugs such as Irfen, not allopurinol. People often take Irfen or a similar anti-inflammatory drug prior to taking allopurinol and the stomach pain you can get from anti-inflammatories typically doesn’t start for a while after you started taking them and can persist quite some time after you stop using them so it’s easy to misattribute the pain or discomfort. Did you ever try allopurinol alone, long after you stopped taking any other drug?

[nobody]

It doesn’t count as starting.
But the traditional advice you’re talking has been shown not to be generally applicable to begin with and should therefore not be repeated without qualification, lest people be discouraged from starting allopurinol for no good reason.

[nobody]

Hi!
Definitely continue taking it. Don’t take twice as much to compensate, just the regular amount.
It’s fine to forget to take allopurinol once in a while because it’s slow-acting and stays in your system a while anyway. But you try not to neglect taking it several days in a row.
Allopurinol won’t make the pain go away now that it’s here but I assume you know what pills to take on top of allopurinol for the inflammation and pain.

[nobody]

3kg isn’t a lot but losing that much within a single month is somewhat dangerous and generally not recommended if you have gout. Obviously I’m talking about your average weight as you might occasionally get variations about as large as 3kg simply from random changes in the amount of water in your system and so forth.

Your body would probably get used to the drug but that doesn’t mean you can’t quit. Your body would also get used to being off the drug after a while. What it means is that, unless your uric acid wasn’t very high to begin, you shouldn’t stop it without having a decent monitoring plan (such as unusually frequent blood test at your doctor’s office). I don’t know that there are studies about stopping febuxostat (it’s a less common drug) but its main effect is the same as allopurinol’s and people have been able to discontinue allopurinol for extended periods (many years in some cases).
Allopurinol stays in your system longer than febuxostat which is one of the reasons I would consider low-dose allopurinol more dangerous than low-dose febuxostat. But keep in mind that your wheezing may not be related to allopurinol.
There is a correlation between the time you’ve had untreated gout before successful UA-lowering treatment and the time it takes for the treatment to clear your crystals. So getting clean might take much less than a year in your case.
I would still keep taking the drug for a little while after the crystals are gone (see above for the role of the immune system in crystal formation).

[nobody]

Hi again!
I’m glad you didn’t disappear because you got a CVE from febuxostat. This is the most controversial thing about this drug.
You almost certainly still have a significant amount of solid UA in your system. This could cause spikes and I don’t think they’re a concern. The therapeutic targets include a safety margin so it’s OK if you exceed them occasionally. Certainly I used to have a lot more variance in my results when the lowest result I could achieve was between 310 and 320 and I still had serious attacks. I guess issues with febuxostat absorption might also explain the spikes (maybe take a look at what you’re eating or drinking around the time you take your dose).
I doubt you really need 120mg but the side effects shouldn’t be much worse than 100mg and increasing your dose might well get you cured faster. You’ve also been on the stuff long enough that slow-onset side effects ought to have shown up by now. I assume there’s no sign of stress in your liver function tests for instance (as with UA, don’t bother with “normal” but compare actual numbers). Maybe get your cardiac-vascular system thoroughly checked out before moving on to a higher dose?
I wouldn’t change my dose from one day to the next if it can be avoided. If your doctor doesn’t want to move to 120mg straight away, could they write you a script for a custom dose such as 110mg? Pharmacists should be able to fill custom prescriptions (they are typically used for young children) but I don’t know if the NHS covers that.

I don’t have your email by the way. I’m not going to visit your island anytime soon (especially not given current events) but I could still write if I had it.

[nobody]

Congratulations on your sobriety!
The benefits will show over the years.

What you read is unfortunately correct: especially if you’ve had gout for a long time, attacks are part of the cure. Gout is a slow disease which takes years to set in and which also takes a long time to go away after you have set the right course.
You can have long breaks between attacks regardless of how responsible you’ve been so not having attacks for a few months isn’t a reliable sign you’re getting better.
Your guess is also correct: if you did not take enough allopurinol to cure your gout and go on to increase the dose, this could have the same effect as starting allopurinol.

Unfortunately, merely having several attacks is not sufficient to tell whether your new allopurinol dose is strong enough or not.
The results of blood tests might give us clues about what’s going on.
If you have experience with the various stage of the disease and therapy, you can get a feel for what’s going on in your body but I don’t think it would be responsible to try to make guesses based only on the subjective reports of a complete stranger over the Internet.

[nobody]

I hope you’ll forgive me if I don’t answer every question and answer questions you didn’t ask instead.
I’m going to try to use my experience to give you the information which would be most helpful to you without writing a whole book. I have gout in my family and have gone through more than a dozen doctors (or experienced specialists without a medical degree) who have made a ridiculous number of mistakes with me so telling you about my experiences would be a long story…

I recommend you try febuxostat if that’s what the doctor suggests. Gout tends to get worse (possibly resulting in permanent damage) if you let it develop and this drug works better than almost anything else. You can try a very small dose at first which should minimize any risks and see for yourself what side effects you get (if any).
There are natural remedies but if you want them to be effective, you’re going to have to use them like a drug. And if you use them like that, there are going to be side effects as well. One issue is that you won’t be able to dose them anywhere as precisely as you can dose pharmaceutical products. Another is the cost and inconvenience.
I would also like to remind you that you would probably be able to allow your uric acid to rise into unsafe territory temporarily AFTER you’ve cured yourself properly. That is the best time to experiment with unproven ways to keep uric acid low.

Arcoxia is a regular anti-inflammatory. It’s one of the many drugs which has a slightly different target than tradtionnal anti-inflammatories (which is supposed to reduce certain side effects). One noteworthy difference is that Arcoxia remains effective longer than regular Indocid pills (it’s more like the delayed-release pills).

There are several problems with your plan.
One is that losing weight that fast isn’t recommended, especially if you’re not taking a drug to control your uric acid. It’s liable to make your gout worse. The same goes for exercise: moderation is recommended.
Another is that you need to learn how to replace animal flesh properly before trying to limit calories and exercise at the same time. Most people have no idea how to avoid nutritional deficiencies and you need to consider the health impacts of what you replace meat with which isn’t the same for everybody. Even professionals sometimes give out bad nutritional information. If you want to do this responsibly, it’s going to be a slow learning process.
Another problem is that, on top of the side effects and interactions (please don’t start using all these products at the same time!), some of the unscientific stuff recommended for gout may actually make it worse. People get confused about all kinds of health issues but gout is especially confusing because you don’t feel the crystals when they are left alone to grow. But if they are disrupted, your body will react. So people might end up finding tricks which limit their symptoms but promote crystal growth. If you want to know what actually works, you’ll have to try one thing at a time and test your blood several times after each change… this would take years, and would be quite costly to boot.

The 0.36 (more like 0.355 actually) story is more complicated. Crystals should not form even with somewhat higher values (barring extraordinary circumstance). The thing is, you want a safety margin to protect against random variations… but how large should this margin be?
The “magic” number only has scientific backing because of what you might call historical inertia. It was a traditional treatment target, and so was used in many studies. Time and again, people who achieved this target were shown to have gotten rid of their crystals. But that doesn’t mean a higher target wouldn’t have worked or that a lower target wouldn’t have worked better.
Some doctors do not give much credence to the traditional target and medical guidelines support using a lower target in severe cases. The traditional target may not be ideal or work in every case but it’s been shown to work in most cases which is good enough for most people.

Yes, too little uric acid can be bad. This is not going to be a worry unless you take whole Uloric pills or something equally effective. Even then, the mainstream opinion is that it takes a long time for a lack of uric acid to do any damage so it’s probably fine if you take too much febuxostat for a few months.

[nobody]

I don’t think there’s a magic number, though you can start by assuming there’s one. It’s certainly more productive to aim for 0.36 than to have no goal.
The problem with diet as a solution isn’t your 0.4 test result (which I understand was affected by allopurinol) but your 0.51 result. Getting from 0.51 to 0.36 without drugs would be a serious challenge indeed.

One problem with Arcoxia in my opinion is that it’s initial effect is weak compared to Indocid, especially if you only take 60mg. Colchicine in combination with Arcoxia might be a powerful way to end a lingering attack over the course of a day or two but you may find yourself waiting way too long for their effect to really kick in if you take these drugs after an attack starts.

[nobody]

The mechanism for crystal dissolution is the same regardless of the drug you take (or even if you don’t take any drug). It’s primarily a function of temperature and of the amount of uric acid in your blood. If you have too much but not a huge amount, crystals are going to dissolve on a regular basis but you are never going to be rid of all of them.

0.40 is still too high. Granted, you had only started allopurinol and taken it inconsistently to boot. Test results also vary randomly so you need to do more. But my preliminary guess would be that 100mg is not enough allopurinol in your case. It looks like a small dose such as 150mg or 200mg might be sufficient however, at least if you are careful about your diet and alcohol consumption.
If the specialist would rather give you febuxostat/Uloric than have you try a desensitization protocol (see my earlier post), you shouldn’t start with more than 20mg (many doctors are clueless about this). Really, you should start with 10mg and increase to 20mg later but this may not be practical depending on the pills sold in your country. I think Uloric does come in round 40mg pills that look like they can be cut in halves or even quarters easily. So don’t let the doctor give you the troublesome 80mg pills if you can avoid it.
Allopurinol and febuxostat would the most straighforward way to cure your gout but, again, there are alternatives if they both prove unworkable. Best start by giving them a good try though!

About your plan for attacks, I would strongly recommend you inquire about taking more than two 25mg indocid tablets at the same time. If you get a nasty attack, you will need it (that or the prednisone)! I don’t think it would be a great idea to take a lot more than you’ve already been taking over the course of a day. I’m only talking about when the attack starts.
Doctors may want to give you a PPI (stomach protector) to go along with the indocid if you were to take a heavy dose.
Maybe also ask for a painkiller than doesn’t stress the liver like the acetamiophen/paracetamol you’ve been taking if you are going to try febuxostat/Uloric (that drug can be nasty on some people’s liver).

[nobody]

This isn’t typical of gout but you can develop less typical symptoms if you don’t treat your gout. This sounds like it could be a minor attack at a different location within (or adjacent to) the joint than you’re used to. It would still be prudent to get your foot checked by a doctor in case you’ve broken a small bone or something.
The treatment you need in any case is to lower your uric acid. What value did your latest blood test come back with?

[nobody]

It’s good that you have actual numbers for your UA.
The bad news is that “normal” is irrelevant and 0.51 is very different from 6 (there are different units in common use). Your test result is high enough that you may indeed have to take medication for the rest of your life… not necessarily without long interruptions but you probably would find yourself going back to some UA-lowering drug or other after each break.
Certainly 50mg allopurinol was utterly inadequate to give you a break from your symptoms.
The good news is that allopurinol is definitely not your only option. It is not a choice between walking or breathing! Febuxostat does have some of the same side effects as allopurinol… but only some! It is in any case not the only alternative. But first, you need to make sure that the wheezing is indeed a side effect of allopurinol. And if your doctor has no better suggestion to test your theory, the most straightforward way to do that would simply be to quit allopurinol.

You don’t want to go on and off allopurinol constantly but as you note breathing is rather vital! You can simply stop the drug for a couple of weeks and try it again, starting with a low dose such as 25mg which you would increase every week or so (provided the wheezing doesn’t come back of course!) until you are back at 100mg.
I would naturally encourage you to discuss this plan with your doctor, if for no other reason that you will need the support of a doctor to safely experiment with alternatives to allopurinol in case the wheezing comes back. But if an emergency phone call or visit is not an option, you can always discuss that plan after having quit the drug. If your doctor thinks your wheezing is psychological, they could give you an anxiety drug while you are slowly re-introducing allopurinol in your system.
Please be aware that allopurinol side effects may not go away as soon as you quit the drug (depending on the mechanism). You need to stay off the drug a little while so if the presumed side-effect goes away very slowly, the cause might not be obvious and the real test would be what happens when you go back on the drug.

If there are any signs that your breathing becomes genuinely difficult or that your mouth or throat is swelling, I would encourage you to seek immediate medical attention.

[nobody]

I don’t know for a fact where I got gout. Yet more uncertainty…
Without timely access to rare and expensive (or alternatively: difficult to use correctly) equipement, we can only make guesses… and the guesses of doctors have sometimes been obviously terrible. Family members who have experience with the disease have done much a better job I think.
My guess is that my most frequently affected joints were: toes, ankles, knees, thumbs and one wrist (in that order). I also got some gout-like symptoms in my feet near but not in any joint. Finally I suspect that one of my elbows was affected but that is far from clear (I damaged it during an accident when I was a kid, something which could help gout settle there but also invites other explanations). Other areas might have occasionally have been mildly affected. I seem to recall having gout-like symptoms on a couple fingers other than the thumb for instance but these are vague memories so the pain can’t have been bad.

[nobody]

The immune system is not only what causes the swelling and pain, it also plays a role in the formation of crystals in people suffering from gout. Though that is not the only factor, the more you have gout symptoms, the easier it will be for crystals to form.
In order to take this further, I need to rely on speculation rather than evidence. But it seems reasonable to me that, after a break from gout symptoms, the immune system might both contribute less to the formation of crystals and be less likely to react to any crystals which might form anyway. This would explain an otherwise odd fact: some people who have cured their gout properly can let their uric acid climb a bit without getting gout symptoms. Sometimes it takes years with unsafe uric acid levels for gout to come back.
On the other hand, looking at how long vaccinations can remain effective, I suspect that your immune system isn’t likely to go all the way back to its pre-gout state. And indeed, while most people with unsafe uric acid levels don’t have gout, gout-prone folks get symptoms over and over again with the same uric acid levels.
I for instance have had unsafe uric acid levels for more than 10 years before developing gout-like symptoms (I don’t know for sure which of my early symptoms were actually caused by gout, if any). Now I take care to keep my uric acid much lower than it used to be (since you ask, I use an alternative to allopurinol and my overall experience has been a bit of an ordeal thanks to terrible doctors).

Your doctor is right that UA levels take a while to normalize.
It is also a fact that they fluctuate. So no matter how long you wait, you will not get very useful data unless you test your UA several times and average. At the same time, the higher effectiveness of allopurinol (as compared to diet for instance) means you can get a pretty solid hint of how the therapy is going to play out with an early test. This is only part of why I would recommend testing early. The main reason is simply that you need a blood test for your liver and kidney function anyway so you might as well get your UA tested while you’re at it (the extra test would take very little effort as compared with drawing your blood and so forth).

I would recommend you start tweaking your diet before going off allopurinol (but you could perhaps take a lower dose at that point). You can get an idea of how well your new diet is working even while you are still on allopurinol. If you were to take allopurinol for much longer, it wouldn’t be a big deal but three months is really short so you better have an effective way to lower your UA ready the day you quit if you stick to your 3-month plan (something I can’t recommend honestly) and ajusting one’s diet takes time.
In any case you want to take a fairly strong allopurinol dose unless you are pretty confident the attacks are gone for good. So this talk of discontinuing allopurinol is premature. First see if you get any more attacks or if that was the last one.

[nobody]

If you never had gout attacks or strange joint symptoms before this year, the crystals might be gone within weeks rather than months. But yes, you should be taking a steady dose of allopurinol for months anyway not only because won’t know when they’re gone and you want to err on the side of caution but also because you want to desensitize your immune system as much as possible (unfortunately I doubt it’s possible to desensitize it completely) before quitting allopurinol. And if you don’t want to keep taking allopurinol for the rest of your life, you’d better find an alternative way to keep your uric acid down (diet might work but you’d have to verify that with blood tests).
You can play with your colchicine dose (as long as you avoid very dangerous doses of course), go off the drug and on again as you please. But I would recommend against doing the same with allopurinol. Your metabolism adjusts to that drug (for instance people sometimes find strangely elevated amounts of uric acid in their blood after quitting allopurinol) and there’s a risk of developing a reaction to the stuff so it’s better if you have a steady amount in your system. In particular you don’t want to increase your dose brutally. Get your blood tested each time you increase the dose and once you find a dose that works, best stick to it. The stuff stays in your system for a while so it’s OK if you skip your daily pill once in a while.
So we can be sure you didn’t get that attack because you dropped your dose to 25mg (you were effectively still on 50mg). During the initial phase of treatment, you can get attacks regardless you how much allopurinol you take but there’s a larger risk if you don’t take enough. And I very much doubt 50mg per day was enough.
Most people take more than 100mg per day and some take a lot more. But the blood tests will tell. See what they look like after a while on 100mg (you’ll need your exact test results from before you started allopurinol for comparison). Don’t wait three months for your first blood test after starting allopurinol (even if you feel OK, the drug could be putting potentially dangerous stress on your system).

If your Indocid tablets are 25mg, two tablets is still kind of weak to deal with a gout attack. Then again, it is a fairly dangerous drug so be reasonable with the dose, especially if you’re going to take it for more than a few days. The cumulative stress caused by taking 150mg over the course of a day is far from trivial while taking the same dose several times throughout the day isn’t ideal (you’ll end up with more of the stuff in your system when the attack ought to be waning than when you are most in need of a heavy dose).
Panadeine is arguably not the best thing to take in combination with indocid and allopurinol considering you are yet to have a liver function test. There are painkillers which put much less stress on the liver but they aren’t safe for everyone to take so this may be something to discuss with your doctor. Some doctors would rather have you take more indocid (or similar) than take a painkiller on top.

[Author]

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