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Hi!
I recommend you see a doctor.
Gout typically involves swelling and often times also redness, not just pain. But after 15 years of untreated gout, almost anything is possible. In any case, you should provide a more detailed description if you want an opinion. I’m not sure it’s worth it though: you can’t tell if it’s gout or not over the web.
Ibuprofen and similar drugs should help if it’s gout… provided you take enough and wait long enough for the drugs to act. So if your odd symptoms last less than an hour anyway, I wouldn’t expect them to do anything.You need test results for the amount of uric acid in your blood.
Yes, some organ meats and some seafood is problematic. But some other stuff is also. So the information you’ve provided about your diet doesn’t tell us anything.There are alternatives to allopurinol. You need to take something for uric acid regularly if you want it to be effective.
I gave you numbers from memory which I hadn’t even converted properly (I’m not used to this uric acid scale).
I had an opportunity to double-check and while I remembered the bottom of the range (the lowest results were 5.3 and 5.4), my highest lab results were actually 7.1 and 8 when I was controlling UA with diet alone. These two results are years apart and the third-highest on diet alone was 6.5. So when you’re not on drugs (or on an ineffective dose), be mindful of potential outliers. My values on drugs are much more stable.GC,
Any joint troubles you get early in the treatment are probably gout but it’s still prudent to rule out other diseases (if you can afford it). My experience is that doctors underestimate how strange symptoms can be at that stage since what you experience might not be inflammation directly if the “hot zone” is small enough but for instance its effect on a nerve or even a general immune reaction (fever and so forth).
There are also rare side effects of allopurinol so one should not neglect things like tingling if they persist. Gouty inflammation on the other hand shouldn’t last long outside of a large joint with uric acid under 5.Forever:
It might feel like forever both to gout sufferers and to doctors who are used to a different timetable but I’ve not seen any evidence for gout proper persisting more than 3 years of effective treatment. But given the huge uncertainty in how long treatment might take, I guess it’s best not to over-promise and “forever” does tick that box.
Rather than “contradictory views”, I think there’s a great deal of uncertainty about the role of the immune system in crystal formation, where crystals end up outside of joints proper, what it takes to get rid of them and the consequences of the damage they do. Obviously some statements are going to be contradictory but who claims to have it all figured out? The important thing is that we know is that allopurinol as well as other ways of lowering the amount of uric acid in one’s blood work.
If you’re interested in anecdotes, the last time I recall using crutches was after 14.5 months of effective pharmaceutical treatment and the last time I recall experiencing something distinctly attack-like which made it difficult for me to walk was 21 months after starting that drug for the last time. I’d naturally say I wasn’t cured then but even now, I’m not sure I’m totally cured because minor symptoms have many potential explanations. So I’d say I’m at leas mostly cured. Certainly it looks like the treatment ended up making a big difference in my life.
Even if you can get DECT scans, ultimately you’ll be the judge of whether you are cured or not. There is hope it might not take so long in your case because it sounds like you got an effective treatment early.Diet:
Of course uric acid comes from the body. The point is that diet affects the amount. I’ve managed my uric acid without drugs for about 10 years and based on that experience, you are over-interpreting a single uric acid result (“I took a UA test which had come down from 6.8 to 6.7 after 12 months of consistent discipline!”). Sure, I’ve had tests returning 6.7 or thereabouts after an attack but most tests returned much lower values (as low as 5.2) without drugs. In some cases, fixing gout with diet would be hopeless. In other cases, a willingness to change one’s diet would be sufficient to get rid of gout. In between there are a great many cases in which it’s not clear if diet alone could do the trick but obvious drugs would do a much better job. In most cases, a combination is probably ideal.
The thing is, getting diet right is much harder than drugs. Maybe you got it figured out but you say “I used to eat meat almost every day, including offal, seafood, etc. I changed to a mostly vegetarian diet with a small portion of chicken and salmon twice a week.” as if it was simply a matter of eating fewer corpses (or worse: a matter of abstaining from red meat, a recommendation worse than useless for people who have low to moderate iron levels). Aside from the related issues of excessive gross protein intake and essential amino acid deficiencies, there are purines in plants and especially in meat substitutes and other supposedly healthy foods people use to replace animal products. I recall one study in particular in which vegans had on average significantly higher uric acid than meat eaters even though they tend to have healthy habits.Self-testing:
If you have a need for numbers and can not get proper lab tests regularly enough, it obviously makes sense to try some gadgets. Just don’t trust them until you have mastered the technique and compared the results to lab reports.I didn’t want to address the specifics of what the doctors said because they’re technically wrong (or at least GC’s recollection is) but basically right. And unpacking that would have involved a lot of repetition and seemed too much bother.
So…Some guidelines tell you to use 5 as a target if there are tophi, and one might confuse tophi with garden-variety intra-articular deposits which is where the confusion might be coming from. But you actually want a good bit less than 5 (if possible) to dissolve tophi, and likewise it’s often a good idea to aim for 5 to get rid of regular deposits.
Last time I checked, 6 was still the official target. And so far as I know, there is no actual evidence that 6 is ever too high but there hasn’t been that much research and it would make sense if 6 was too high in some cases. The problem is that curing gout is slow and people are understandably impatient so it’s very hard to tell what’s going on without performing unethical and costly human experiments for which no funding is forthcoming. A lower level of uric acid should cure people from gout faster but we don’t even know if the difference is material in the average case.
My rheuma didn’t care much about targets and was happy with values much lower than 5. Generally, my experience with doctors is that they use the target which is most convenient for them in particular context. The next time you speak to them, don’t be surprised if they say something different. That isn’t much of a dereliction of duty considering targets have never been the point! The main reason you’re seeing a doctor is that these drugs can have serious side effects involving much more complex things than uric acid, and that should be the main consideration in determining the dose you ought to take. If it wasn’t for these side effects, based on the evidence I’ve seen, I’d say the target for the first year of therapy should be around 3.5.I’ll write more later about “forever” and other stuff.
The one thing that really matters is that your last uric acid test was good. Stick to the drug for a while and you ought to be cured. You can try to quit afterwards but it’s obviously too soon to think about it.
You’re not testing your uric acid often enough to have a good picture of what’s going on, especially if you’re not carefully controlling hydration, physical activity, the last meal you ate and so forth.
Chances are, you don’t know how to do a low purine diet in the first place since the information out there is terrible. And purines isn’t the only thing that affects uric acid: protein intake, minerals, fructose and so forth also matter (to different degrees depending on the individual).Speaking of which… did your odd tingling go away? And did you only get unexplained dizzyness that one time?
You don’t need fancy medical care if you know for a fact you have gout. In that case, any doctor should be able to order SUA tests and write you an allopurinol script. No specialist is required unless you do not take well to the usual treatment or the diagnosis is doubtful.
As to targets, it is not the case that everyone here targets 5.
The 5 target is simply for people who aren’t served well by the 6 target… which is another way to say that that your target should be the one that works for you, not 5 or 6.
But we don’t know ahead of time what target will be good for you so you need to start somewhere… and since people can often achieve 5 without side effects, it’s arguably a better place to start than 6 in many cases. It’s also better to err on the lower side at first because that provides a buffer against “debulking” and it’s less risky to try a higher target once gout symptoms are mostly gone.
Most doctors don’t have time for this and only want to know if the number is OK or not. You don’t want to recommend 5 (or even lower) to everyone because of the risks involved with any medication but you also need to let busy doctors know that 6 isn’t always good enough, hence the variations on the “but target 5 in severe cases instead” theme you find printed on lab reports and such.
5 isn’t ideal for people with sizable tophi by the way. Side-effects permitting, you want a much lower SUA to treat that.I recommend you also get your blood tested (or test it yourself) at least once each time you’re pissing in bottles.
But I don’t know what the effects of exercise are precisely or for that matter the extent to which adequate fluid intake balances them. I don’t even know how fast the kidneys work or if there are differences between individuals in that regard.
So I really can’t say what the best time would be to carry out these tests. It makes sense to me that you ought to pissing in bottles both on the second of two rest days as well as immediately after exercising strenuously but I can’t be more precise. For all I know you should rest more than a day before the resting test. Hopefully your doctor will know (assuming they see any value in such tests) but trial and error is always an option…The doctor’s office or the lab should tell you how quickly you must bring the urine. This may depend on what else they want to look for in your urine.
If your flare doesn’t resolve quickly, it’s not strictly necessary to wait until it’s over.
You want to do more than one SUA test.
The more uric acid you’re excreting, the better allopurinol is going to work. In particular, if your excretion increases along with your SUA or even more (relatively) when you’re exercising, that would suggest you do not need a particularly low SUA treatment target. If the tests suggest you’re having trouble excreting on the other hand, you might initially require an especially strong allopurinol dose so as to provide a buffer both for your exercise and for the “debulking”.
The data will also provide a baseline which may be used to interpret the results of the same test if you were to repeat it many years down the road if managing your uric acid became more difficult.
Since allopurinol is metabolized quite slowly, you’d need to suspend the treatment for quite a while in order to get a clean result after having started the drug which is why now is the best time to obtain this information.The trouble with testing your urine is that uric acid is also excreted in other ways so you will only get a partial picture of what’s going on in your body. Still, I think some information is better than none.
Others might not want to burdened with data they can’t put in a formula and that they’d rather do guesswork based on symptoms.If you tolerate allopurinol well, taking a high enough dose will probably take care of all your uric acid problems. If not, the drugs which help with excretion might be an option.
Strenuous exercise is generally not recommended while you still have symptoms, and something like probenecid might indeed help in that regard. But you probably simply need a strong enough allopurinol dose to cover your special needs. There’s little point in trying to take a different dose on the days you exercise because it’s metabolized quite slowly anyway.
The most sensible approach in my opinion is to start by seeing how allopurinol works for you and only think about other drugs if it doesn’t work very well.
But it makes sense to do the excretion tests (along with blood tests) before starting any drug if that’s possible. The doctor might not want to bother with this but even if allopurinol is all you need, the information may be useful to decide on a dose or in determining if you would benefit from other drugs as you get older.I also think it makes sense to take it easy with your exercise at first and make it progressively more strenuous if all goes well… experiment and see what works and what doesn’t!
“Debulking” could take such a long time that you probably don’t want to keep your exercise minimal for the whole process.
And unless you have a kidney problem requiring you to limit your fluid intake or something, always take care to drink enough water considering your body’s needs at a particular time. Mild dehydration is perhaps the best-known trigger of gout.Hi!
I think it’s a good idea to do these tests if you can because information is always useful, but taking probenecid is another matter. And it’s more important to get more blood tests (notice the plural!).
The preferred medication for uric acid is allopurinol regardless of whether you’re an underexcreter or not. And taking no drug on your rest days is probably a fool’s errand, though more blood tests would be needed to ascertain the matter. If you end up taking both allopurinol and probenecid for instance (which is doubtful), perhaps you might take probenecid only on your exercise days. I don’t know that anyone does that but it sounds less crazy than taking nothing on your rest days.Troubles are to be expected only two months into the treatment. And I wouldn’t want to be relying on colchicine alone to take care of the attacks at that stage! Maybe there are compelling medical reasons not to give you any other drug but wouldn’t you have been told if that was the case?
You could bring that up with your doctor next week but frankly, it’s irresponsible to have put a plumber with gout in the hands in such a situation (it’s not the worst job if you have gout but you’re still more at risk than most) so I would consider finding another. Sometimes that’s not practical (especially if you live in a place where the pandemic is active) so you might have to work with the doctor you’ve got.There are pills out there with different amounts of the drug in them so the number of pills isn’t the issue but how many milligrams you’re taking (the amount per pill should be written on the box).
That is too high for comfort. Did you only get the one test with the new dose? It would be a different matter if you had several and 5.8 was the highest but if you only have the one test to base your guesses on, there’s close to a 50% chance it was randomly lower than your usual values with the lower dose so I would at a minimum order another test. If that’s not practical right now and your body was handling 450mg well, the safer course of action would be to try an intermediate dose.
But you didn’t say why your doctor reduced your dose… if your blood test gave them reason to worry about the side-effects, you shouldn’t increase your dose without checking with them first!You don’t say where you live (or how) but if you’ve been suffering from heat lately, that could be the problem. I sometimes take a higher dose when it’s hot.
With test results like 5.8, it’s extra important to remain well-hydrated and people tend not to drink enough water when it’s hot enough to be sweating. There are also diuretic drinks and foods which are especially dangerous when it’s hot and you’re not drinking enough to compensate.What are you test results on your new dose?
If you haven’t had any, anything is possible. I would tend to assume that 300mg might be enough but it’s highly uncertain given the very limited information you have posted.
Gout test results can be erratic so I wouldn’t consider a single test result like this 4.3 to be authoritative unless it’s supported by tests done at different times returning similar values.There is also an outside possibly that you’re still getting a bit of leftover gout from the time before you had an effective treatment. The likelyhood would depend on your history with gout and on all the test results you haven’t posted.
A change in your lifestyle, diet or other health problems might also have had an impact on the amount of allopurinol you’d need to stay safe. Considering 2020 is a bit of a strange year, that’s also a possibility. You generally want to keep monitoring your uric acid status over time even if your dose isn’t changed.
And of course it’s also possible your troubles aren’t cause by uric acid. You would know best from your experience with gout whether it feels like gout or not. A mere similarity in location isn’t a definite clue. For one thing, there is a chance gout may have damaged your joints before your treatment in such a way that they are slowly developing new problems no amount of allopurinol can cure.
Hi Ash!
Sure, there are other meds. But take care not confuse gout-curing meds like allopurinol and meds which suppress symptoms like colchicine.
Gout-curing meds take a very long time to work and can make gout worse when you start them. It looks like you don’t understand this since you neglected to say how long you’ve been on allopurinol. No doing better a few months into the treatment is not a reason to assume it’s not working!
The way you can tell if allopurinol is working is by getting your blood tested for the concentration of uric acid. If your doctor hasn’t done or scheduled this already, find another doctor! Some people need to take 5 times more allopurinol than others or even more so it needs to be dosed based on evidence and not on habit, imitation or plain laziness!Meds which suppress the symptoms on the other hand should work within minutes to days (depending on the med and how you take it). So you don’t need tests to tell if they’re working. And based on your report, colchicine is definitely not doing it’s job.
Again, the dose matters as much as the med. You could switch from one med to the other or even take several at the same time but it’s never going to work if you keep taking baby doses. The generally recommended dose is typically not strong enough to harm most elderly women (or it would be a dangerous recommendation) so the average 32 y.o. male might be ill-served by following general recommendations.
But while colchicine might be failing you because you’re not taking enough, it acts too slow and the side effects are too crazy for most people anyway. The typical med people take to get better and get back to work are simply ibuprofen-type pills. Be careful though: these pills are dangerous! Taking enough of them to beat gout can kill you. Maybe there’s a reason you doctor didn’t advise you to take them… so best see you doctor and discuss what drugs are and aren’t safe for you and how much you’d be allowed to take on a really bad day as compared to how much would be safe for you to take on a daily basis and so forth. If your doctor is useless and you can’t get the notion that gout can not be beaten with baby doses through their thick skull, find another!One month is reasonable. It’s not ideal but there are costs and even slight risks involved in a proper blood test so you don’t want to overdo it either. If your situation was concerning, you would definitely want more frequent tests but, going by what you told us, I’m actually surprised you were offered a test so soon.
Even if the readings from blood droplets are unreliable (you might get better at it with experience), any extra information is good to have as long as you handle it properly: use averages, calibrate against proper blood test done immediately before or after a droplet test and so forth.
Keep in mind uric acid is nothing like glucose however. Gout is a slow disease. You aren’t a diabetic trying to manage short spikes during the day. High uric acid for a few hours isn’t dangerous so you’re aiming for a safe average (although that target might need to be a bit lower if you get more spikes than most). While testing throughout the day or even every day might be interesting, it’s not necessary to manage gout.
And there are factors like the temperature of your joints, how well-hydrated you are as well as the zealousness of your immune system which affect the level at which uric acid becomes a problem so there’s no absolute number you should aim for in the first place, making precision less useful. This is a learning process and you’ll figure out what values are OK or problematic over time (keeping in mind changes in your lifestyle might require recalibrating your targets). At first, all we can tell is what’s clearly fine, grossly excessive or somewhere in between. Side-effects allowing, best err on the side of safety initially and keep your uric acid quite low.
