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nobodyParticipant
The drugs you take for the symptoms aren’t helping your liver either, Malik. The sooner you find a drug that gets your uric acid under control, the less likely you are to end up abusing your liver with other drugs.
The only way to know what allopurinol does to you is to try it, starting with a very small dose and doing enough blood tests to get a good picture of what’s going on (if anything). People sometimes take too much, naturally resulting in liver issues among other problems. Don’t be that careless and you’ll probably be fine. You can’t be your own doctor but you easily be can beat most doctors when it comes to numbers.
The only liver value you posted isn’t alarming (yet). And frankly, this is generally not the main worry with allopurinol.nobodyParticipantHi!
There is no one-size-fits-all answer. But your main concern shouldn’t be whether you could do without a med but what the consequences of trying to do without a med 12 years too late would be. In all likelihood, getting rid of gout will be a slow process now that you’ve allowed it to get that bad, and doing it without meds (if at all possible in your case) would at best be slower, more painful and more likely to leave you with incurable damage.
So I recommend you get on meds ASAP, but to do it carefully. Go through a doctor who actually understands the issues and follows the guidelines, not a arrogant know-it-all who has no time for precautions.Quit alcohol anyways. Besides it own side-effects, it may make the side effects of gout meds worse. You might also end up take a different dose off the dose than you’d have needed on the booze.
nobodyParticipantMedical diagnoses are all over the place in my experience. Even when the misdiagnosis happened to me, I can’t prove anything because nobody really knows what goes on in a foot or a joint (short of an invasive procedure anyway).
What I can tell you about atypical gout symptoms is that I used to be diagnosed with specific stuff such as bone deformities (three different ones, one supposedly incurable and two which could supposedly be addressed with tweaking the balance between the strength of different muscles and such) as well as general stuff like tendonitis. Febuxostat seems to have prevented or cured these problems but that could of course be a coincidence or placebo effect. It’s not like I have zero issues nowadays (I only have fewer and much less serious problems).
About typical gout symptoms, there are a few other diseases causing serious inflammation… one is even known as “pseudogout”. Rheumatologists ought to know how to rule out these problems with blood tests and stuff (my rheuma ordered a bunch of unusual tests after our first appointment). But the most likely non-gouty cause of severe local inflammation is perhaps an infection (any doctor ought to be able to handle that unless perhaps it is a mild chronic infection).nobodyParticipantWhat “isn’t normal”?
The important thing is not to stop taking febuxostat. The other stuff you can stop and start again, the main problem with that being that a serious attack is harder to stop than to prevent.
Depending on the amount of colchicine in the pill, it wouldn’t be crazy taking two depending on your health and size. The problem is that it’s a bit late in the treatment to take colchicine every day. There’s also an epidemic around so this might not be the best time to weaken your immune system.My assumption would be that problems with soft stuff like tendons might not show up on imaging. I wouldn’t expect imaging to reveal nerve damage in particular. But I’m no doctor… best ask the pros questions about what the problem might be!
Also, I don’t know if DECT can show crystals hidden in bone.There isn’t much of a community here but I think the most consensual things besides drugs are that physical stuff like warm water or ice can help with symptoms, that you should always take care to drink enough water (especially when fasting or when it’s hot) and avoid diuretics (drugs, foods, drinks… anything). But the most important thing is of course to test your uric acid and make sure it remains low.
Cherries ought to do something, likewise dairy but you hardly need that stuff if you’re taking enough febuxostat (and anti-inflammatories when symptoms show up).nobodyParticipantHi!
After 12 years of untreated gout, symptoms after less than a year of treatment are only to be expected (regardless of the dose you take). You only need some patience and gout is going to improve on its own as long as you keep that uric acid low.
But becoming repeatedly “irritated” at exactly the same location sounds like it could be something else. As long as you keep getting attacks, any other problems you have could simply be minor gout symptoms. But there could also be damage caused by gout (or even a unrelated problem). In that case, I have no idea if it’s going to get worse or better (both are plausible). Maybe wait for 6 months to a year depending on the seriousness of the problem and if the problem persists, go back to your doctor or try a different one?I don’t think it’s prudent to take colchicine every day for 6 months or more. If you still need a drug to prevent attacks, maybe you could use an extended-release anti-inflammatory for instance.
Be aware that just because an attack coincided with stopping colchicine doesn’t mean that you’d get another attack if you quit it again. It’s plausible that one thing caused the other but the randomness of attacks can be misleading.If I may ask a few questions:
Did you get a DECT in order to look for crystals? If so, how much did it cost (approximately)?
How did febuxostat impact your liver function numbers? Did you test your uric acid when you were taking a lower dose?nobodyParticipantYeah, the liver numbers should drop back down after quitting the drug but that can take some time. Allopurinol is permanent however which is why you want to get the dose right.
My guess is that the number you’re talking about is ALT (reference ranges vary across time and place) and that the other liver numbers are OK. If so, 87 isn’t too bad considering the drugs you were taking. Note that the ALT/AST ratio can be informative even if the latter is within the reference range.I can not comment on the prednisone dosage unfortunately but you weren’t taking enough naproxen or colchicine. The colchicine dose you took is at best adequate for prevention or in combination with an anti-inflammatory (traditional dosage to stop an attack is much more aggressive). And stopping a serious attack after you allowed it to start would require a good bit more than 500mg naproxen, colchicine or not. I can not possibly recommend taking more than the maximum recommended dose (even though that might be necessary in some cases) but 500mg is well under half that dose, though there is of course your stomach to consider which means you’d need to either try a coxib instead or take a PPI on top… so I can understand trying prednisone.
There are more exotic drugs to suppress gout symptoms and of course there are always painkillers… suppressing inflammation is best but if you can’t take the stronger doses I’m talking about because of the side-effects, taking a proper painkiller (ask your doctor for the real deal because gout is no joke!) on top is always an option. I’ve had to merely in order to get a couple hours of sleep during an attack.
A small amount of allopurinol every day might seem like something to be avoided but compared with the above, it’s really no big deal. Gout is something you really want to prevent rather than stop once it’s started!About diet, you need to keep your other health issues in mind. Gout is painful but less likely to kill you than diabetes or heart disease. Making your diabetes or cholesterol worse in order to take a bit less allopurinol isn’t worth it. What fats are you currently eating and how is your glucose control?
In theory, both glucose and fat metabolism could affect gout attacks as well. I’ve never seen actionable data about this but it’s something to keep in mind if you experiment with diet. It’s not all that surprising that your doctors are puzzled by your symptoms when your diet isn’t typical.nobodyParticipantHi Malik,
I didn’t want to barge in your discussion with Keith who has his own process.
But one thing that’s too often neglected about drugs is dosage. Nowhere in your posts do I see a dose. But I’m sure you understand both the effects and side effects of drugs depends on dosage! Even doctors neglect this issue sometimes and stick to whatever dose is printed on a box because they simply don’t have time to understand how to dose every drug.A low dose of allopurinol is quite effective and every additional milligram has a decreasing effect. Some of its side effects can be a problem at any effective dose but if you don’t get any of the serious ones and only have to live with the mild side effect on liver function, that’s highly (and non-linearly) dependent on the dose you take.
For different reasons, medical guidelines recommend you start with a low dose of allopurinol (such as 50 mg) anyway and increase it progressively if you experience no bad reaction and after blood tests show that you’re doing OK. If you did that patiently (something some doctors have little patience for unfortunately), you’d learn what dose your liver can tolerate.
If you were to get a bad reaction from allopurinol, there are alternatives (febuxostat in particular, which works the same way and has the same dosage issues).
So there’s no reason to be “terrified” by allopurinol. If you have East Asian ancestry, a genetic test might be advisable however (depending on the result, it would be prudent to take febuxostat instead).As you might have guessed, taking enough indo, naproxen, colchicine and so forth is key if you want to stop an attack. Taking one pill is often not enough. But of course side effects can also become a problem as one increases the dose…
Note that stomach discomfort on anti-inflammatories is commonly adressed by taking them with another class of drug called PPIs.
All these drugs can disturb your liver.Posting your actual liver function numbers (old and recent) might shed some light on the situation because I don’t know if your numbers are barely above the norm (which is quite common, and doesn’t seem to disturb doctors) or seriously elevated. It might also be helpful if you told us if you have any history of liver problems or had imaging revealing how much fat there is in your liver (failing that, your BMI and age would be informative).
As to your diet and lifestyle, there are things you can do but I wouldn’t recommend it as an alternative to allopurinol. Instead you could try such changes in combination with a lower dose than you might have needed otherwise.
People who eat only plants (and micro-organisms or mushrooms) apparently tend to have elevated uric acid. This is probably because on the on hand, many protein-rich (and especially lysine-rich) foods contain compounds which elevate uric acid and on the other, dairy contains a compound which lowers uric acid. While abstaining from animal flesh is a simple way to lower uric acid, abstaining from dairy and eggs (the main protein sources which do not elevate uric acid) is problematic.
We can discuss these issues in more detail if you want but starting allopurinol (or another drug which lowers uric acid) should be your priority. Attacks can last for months without effective treatment and modern guidelines do not recommend waiting until an attack has susbsided. The only reason to delay treatment would be if another disease mimicking gout is suspected and doctors are waiting for the test.nobodyParticipantHi!
I presume you’re only guessing these are tophi. Uric acid is known to move around the body after starting allpurinol but that is a bit much…
It would be prudent to test your uric acid level again, especially if your doctor suspects these are really tophi. Also best make sure your latest test read 5.3 and not 0.53 or something.I don’t know how much colchicine you’re taking but dosage is controversial. If you’re only getting “soem relief”, you might not be taking enough. I’ve taken a good bit more than is common these days when trying to deal with a flare without anti-inflammatories. Obviously you shouldn’t take more without discussing it with your doctor!
There are still other drugs you could perhaps take to suppress flares if you can’t take anti-inflammatories.
I recommend discussing what to do in case you ever get a serious attack in advance with a doctor. Especially if you can’t take anti-inflammatories, you’d benefit from timely measures to prevent it from getting too bad.nobodyParticipantOnce I get used to it, I don’t find it very hard to carry on. But I never juice-fasted for longer than a week as that was enough to make me catch a nasty infection. Maybe that wouldn’t have happened if I had used a blood glucose tester.
nobodyParticipantSymptoms aren’t a reliable guide unless you take a very long view. Gout attacks can go away for many months without treatment so many become convinced by the efficacy of weird cures and rituals.
So I must insist: what you most need to know is the results of your lab tests over the years.I’ve seen a specialist for a knee problem once (most likely a gout-related injury) and I can’t remember the name of the specialty but most of his clients were seriously into sports. Seeing a rheuma might make more sense considering the pain seems to be affected by your diet.
Crystals can be inferred based on MRI or ultrasound imagery and conclusively detected by DECT (rarely available) or joint fluid tests (but I don’t know if getting fluid from the knee is practical). There may be other ways.nobodyParticipantHi again!
How dangerous a juice fast is naturally depends on how many days you’re talking about. If “a few” means two, no worries. But assuming you meant more than that…
Gout is far from the main issue. I apologize if the following sounds patronizing but I’d be much more concerned about you becoming dangerously thin, developing an eating disorder or protein deficiency. Granted, some people can survive such injuries to their bodies better than others. Having no history of troublesome infections and being in solid health generally would be a must. I would recommend monitoring your vitals including your blood sugar and making sure you are hydrating enough (unless you were already on a low-carb diet, you will need more water). If the epidemic is ongoing in your area, you don’t want to become a burden on the health system at this time or catch the infamous bug while getting treated for an avoidable bacterial infection.
As far as allopurinol is concerned, there is as always a balance to strike between the risks. If you’ve had no gout symptom for a long time, it would probably take a while for any risks to materialize. But the longer you go on without eating properly, the more chances you take. The effects of such as fast as well as the effects of rapid weight loss more generally on one’s uric acid would vary from one person to the next but an unknown risk would be a reason to take more allopurinol. On the other hand there are risks with allopurinol’s side effects as well. And obviously I can’t possibly recommend you increase your dose if this has not been approved by a doctor on an earlier occasion!Good luck!
nobodyParticipantHi!
It’s strange you’ve seen so many doctors about a knee issue and all you got out of it was x-rays. I hope they’ve run more tests on your bloodwork at least to rule out infections, other joint diseases and stuff.
I also don’t understand they blame gout if your UA has been good for a long time. But maybe your home tester is off… what have the lab results said during the years you’ve been on allopurinol?
Sorry but assuming your UA levels have been reliably good and UA crystals have not been found in your knees, I’ve got no recommendations except spending a lot more on tests and doctors to learn what’s going on in your knees. But that might be a waste if you simply require more rest (based on how active you are, I suspect your “long breaks” might not have been very long or very restful).nobodyParticipantAs long as it’s a minor problem, it doesn’t matter much. That said, you can get another form of arthritis which gets worse over time as a complication from past gout.
If it’s gout proper, this recent problem should go away on its own before long. It’s not very surprising to get occasional symptoms 18 months into the treatment. But if you had recurrent symptoms which kept occurring for 18 more months, it might be a sign your dosage is too low. Uric acid targets aren’t all that precise (and I’m not sure about the tests themselves). It looks like there’s a medical consensus around the notion that 5.5 could be too high for some patients.nobodyParticipantWithout expensive medical tests, I don’t think anybody can tell you what’s going on. You’re probably the best-qualified person to make a guess, based on your experience and how you feel exactly. After 18 months on allopurinol, surely you know how gout feels like, if only from the time before you were taking allopurinol (crystals can also dissolve when you’re not taking a drug).
If you never had very high uric acid, perhaps the biggest difference you should notice between gout symptoms before and during treatment might be their duration. Of course any drugs such as ibuprofen you take to suppress these symptoms would mess with your ability to notice such differences.Certainly it’s possible you are still burdened by a few crystals.
But you also have to be careful when making such assumptions because it could also be an infection (do you have a small wound in the area, were you bitten by a tick or something?) or something else that requires treatment. So it’s good that you’ll be seeing a doctor!nobodyParticipantThere are many drugs which reduce uric acid, some of which might be more appropriate if you have other health problems.
But if your doctor doesn’t want to give you any drugs and you can’t see another, we can at that point go over all you could do in terms of diet… which is probably more than you think (but more inconvenient as well!). Some foods even work a bit like drugs, except you can’t control the dose properly.nobodyParticipantWeight loss and exercise can raise uric acid but what matters are the effects in the long run, and you’ll have to be patient and monitor any benefits with repeated testing over the coming years.
It’s definitely not as simple as a linear relationship between weight and uric acid. Your weight loss maintenance diet matters of course but there may also be weight thresholds. The effects may take a long time to appear as well because your metabolism requires time to adapt. Your diet may also change over time after losing weight, if you had pathological weight-induced insulin resistance for instance.
My guess would be that if you had no symptoms of metabolic syndrome, it’s the diet which matters rather than weight as such.Long story short: in most cases, allopurinol is more effective and works much faster than weight loss.
nobodyParticipantHi!
402 is well outside of the range you want your uric acid to be in. That’s definitely not OK. If it was, you wouldn’t need to do anything about your diet, would you? Nor would you have gout. So forget about your lab’s range. It’s not even supposed to be relevant in treating gout.
The problem with UA lowering meds is that they have dangerous side effects. So you could start by trying to fix your uric acid problem with diet. But unless you used to have an alcohol problem or your diet used to be crazy bad, chances are you’ll end up on UA lowering meds anyway and some of the damage done by allowing the disease to progress in the meantime can’t be undone afterwards. This is in any case no emergency so you can afford to take your sweet time working with your doctor to make sure allopurinol is safe for you to take. You could also try very low doses at first, getting your doctor to check your liver function and stuff before taking potentially dangerous amounts. Doctors unfortunately often reason that since there’s no emergency, they might as well do nothing until your health has deteriorated so much that it unquestionably justifies the use of a potentially dangerous drug…
If you are going to try dieting, one problem is that the recommendations are typically useless. We can go over that if you want but allopurinol works so much better than diet that you might not want to bother. -
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