Forum Replies Created
-
Posts
-
Not knowing what causes this soreness, I can’t guess when it might go away. Anyway, it’s encouraging that there has been some improvement.
As you probably know, there are drugs which help with inflammation though they would have worked better if you had taken them earlier.About blood tests, they have some limitations. First, if you had higher uric acid in the past (for instance because of a different diet or lifestyle), you could have gout attacks in spite of negative blood tests. Second, there’s some noise in test results and so you’ll need to repeat that test and see if you keep getting similar values.
If you keep having gout-like symptoms in spite of test results such as 6.2 and you don’t have a good reason to suspect you might have had higher uric acid in the past, it may be advisable to see a specialist which could rule out less common causes of joint inflammation.The maintenance target is 6. Now you might get away with a bit more. There are individual variations, environmental issues and so forth. In theory, crystals shouldn’t form under 7 but we need to allow for joints colder than regular body temperature as well daily/seasonal/random variations…
I doubt less than 200mg would be enough in your case. But the blood tests will tell…
Just don’t jump to conclusions on the basis of a single test. These need to be repeated and what matters most is the average.Higher doses until symptoms go away is in the guidelines, except only for severe cases of gout. Assuming there is no sign of your system having any trouble with allopurinol, I think you’ve allowed it to fester long enough so that we might put you on the “higher dose” track regardless of severity even though there is no hard evidence for it making a difference in a case such as yours.
The official “higher dose” SUA target is 5 but it’s fine if you make it drop a bit lower. You don’t want it much lower for years on end but for the time being lower than 5 is probably better than higher until you are symptom-free for at least 6 months. The real issue isn’t a concern about making your SUA drop too low but rather that a higher dose than necessary might trigger a reaction to allopurinol. It’s a potentially dangerous drug so I would err on the side of caution unless your gout symptoms are very serious or debilitating. See how you fare on a reasonable dose before considering very high doses.Something else: I remember one doctor recommending their patient to go straight from 100mg to 300mg because those are the pill sizes. This is stupid and reckless. Increase by 100mg steps at most. It would actually be safer to increase your dose by 50mg every 2-3 weeks (no need for a blood test each time if you only increase the dose by 50mg steps). The pill sizes are designed so that you can get most reasonable doses with a simple combination (for instance taking a 300mg pill with a 100mg gives you a 400mg dose).
Like I said, you should re-evaluate the dose “every few weeks” until you found a dose that works. Sorry if that’s vague but it depends. If your doctor doesn’t have a reason to do it differently and since you seem healthy, maybe make the interval a month? I wouldn’t wait so long for the very first blood test and dose upgrade after starting allopurinol however.
Getting frequent and less severe attacks (you still get the bad ones, just not as frequently as the minor ones) seems to be a common evolution of gout separate from the “gout hell” phenomenon which can be worse than what you described. Your test results don’t rule out either explanation (with so few tests, it’s hard to tell) but if I had to guess, I’d say this wasn’t “gout hell”.
Getting your blood tested every 2-3 weeks at first and then every 6-8 weeks sounds like a reasonable schedule when you’re experimenting with allopurinol dosage. Guidelines will say stuff like “every few weeks”. How often really depends on individual factors but waiting 3 months for your first blood test after initiating allopurinol is clearly irresponsible.
For one thing, you need to get your liver and kidney function tested. It doesn’t take 3 months to damage your liver and it’s not painful. You might not notice anything until it’s too late but a blood test should show anomalous values if your liver didn’t take well to allopurinol.
You can in principle start with less than 100mg actually. Allo pills are often designed to be cut in half. I’m obviously not saying you should lower your dose, only commenting on the “minimum dosage”.It’s not recommended for a gout sufferer to lose weight so fast. Anecdotally, people often seem to get gout on low-carb diets.
There’s way too much noise in test results to draw any conclusions about the effects of diet based on only two tests.
I’m not sure you had “gout hell”. Your test results were a bit high for that. Attacks can become more frequent and spread to other joints after a while anyway. That’s one of the reasons gout shouldn’t be allowed to fester several years without treatment.“Not a lot” of crystals is consistent with the SUA test results you’ve posted. And “not a lot” is too much.
Furthermore, while we do not know how high your SUA used to be, that you have any crystals with a SUA tests coming back under 7 also suggests gout (crystals do not form so easily in the bodies of people who do not have gout).
Keep getting your SUA tested! Nearly every test should come back with a value under 6. If it doesn’t, you should consider medication or possibly eating a lot of foods known to lower uric acid.Rest assured to you are not the only one in a “laugh or cry” situation! Here’s a model for self-reinforcing medical malpractice:
Start by neglecting and misdiagnosing patients who have mild gout.
Then, when a patient with mild gout annoys doctors enough to get some tests done, their result will be different from the results of the gout patients the doctors are used to. Use this fact as an excuse to dismiss the patient with mild gout.
And so the next time a patient with mild gout shows up the doctors will have no experience in diagnosing or treating them even though there are many other patients with the same problem.People have naturally talked about colchicine here. It’s by far the oldest gout medicine after all! It is not an alternative to allopurinol however. And the side effects of prolonged use are rather serious… colchicine is certainly not a drug you should take for years on end like allopurinol.
Gout does cause damage over the years if it’s not prevented so it’s unfortunate your doctor hasn’t insisted on allopurinol earlier.
The main alternatives to allopurinol are: lifestyle/diet changes and another drug called febuxostat. There’s also a class of drugs called uricosurics as well some herbal compounds and compounds found in common foods which are generally less effective. Finally, there’s a very powerful and expensive drug which is injected in the bloodstream. All in all, allpurinol isn’t a bad choice in most cases. There’s a genetic test to prevent bad reactions you can take if you have East Asian ancestry.
The point of allopurinol and its alternatives is to reduce the amount of uric acid in your body. Colchicine doesn’t do this. Uric acid is routinely measured and knowing the test results is helpful in narrowing down the best options for a particular gout sufferer.
Good luck!See how long you stuck to 80mg before increasing your dose? It’s obviously too soon to think about increasing it further.
340 is only one result. You don’t know how your average on 100mg will look like. Comparing it to your 346 result is wrong. That was the lowest out of 7 results! Your average on 80mg has been 374.
And you should be monitored for sides effects for a while. 100mg is an uncommonly strong dose so make sure everything is being checked (for instance: not just ALT and AST but ALP as well). Mind your blood pressure, your weight, how well you are sleeping and so forth. Obviously hemo is a special concern… get it tested two or three times minimum on 100mg before moving further.The “good” vs. “safe” thing is misleading in your situation. Your UA was recently much higher so you wouldn’t be safe regardless of your test results.
In light of your test results, 100mg febux is highly likely to be sufficient to cure your gout in the long run if you stick to a decent diet and stay clear of alcohol as well as other diuretics. There’s of course the chance you are a special case but the only studies I remember reading in which a few patients didn’t heal while testing at 350 umol/l or less were looking at bone disease (which is known to develop after successful ULT anyway). So the issue as I see it is: if your lingering symptoms aren’t giving you too much trouble and you aren’t endangering your health by taking anti-inflammatories all the time, endangering it with poorly-tested febuxostat doses seems unwise. On the other hand, if more febuxostat might help you get off other drugs, that would be a different matter…
And if there was something fairly safe your could do to lower your SUA further, it’d be worth trying. So if you haven’t already given a good look at your dairy and minerals consumption… well, here’s a new year resolution for you. Alternatively, see if you can find a doctor who has experience with combination therapies (XOI+excretion booster).In my opinion, febuxostat vs. allopurinol should be a matter of individual reactions to the drugs and individual vulnerabilities.
Febuxostat has often been claimed to be preferable to allopurinol for patients who have kidney disease but I understand some people are arguing against this claim. I don’t have a serious kindney problem and so I know next to nothing about the issue.
Allopurinol is of course better-tested and febuxostat is more dangerous according to some studies but the dosage is a confounding factor. People often compare stronger doses of febuxostat to weaker doses of allopurinol. Also, strong doses of allopurinol (like the one your husband would probably need) aren’t so well-tested. I wish less biased and better designed medical research would have provided us with more conclusive data but here we are…
So assuming your husband is tolerating febuxostat well and you have no particular reason to be concerned about these elusive cardiac side-effects, I wouldn’t pick a fight with your husband’s doctor on this issue, especially at this stage. You’ll have a better picture of your husband’s requirements later on and a moderate allopurinol dose might become a long-term option at that point.I’m afraid effective alternatives to NSAIDs might be even more dangerous in your husband’s case. Hopefully your husband will simply have less need for anti-inflammatories in the future. But let’s see what your doctor (or doctors) think about that…
Assuming 80mg febuxostat doesn’t result in alarming blood test results or more subjective unbearable side effects I see no reason to change your husband’s dose at this stage. It’s too soon to declare victory over gout even though any reoccurring symptoms ought to be less violent and/or shorter in duration.
Prolonged NSAID use is dangerous however, especially when a PPI such as omeprazole is required.
If it’s at all possible at this stage to dial down the NSAID dose and maybe take it only on the days when inflammation shows up, that’s what I would recommend. If your husband is ever told to abstain from NSAIDs because he took too much in the past (possibly damaging his stomach or what have you), he’ll be in trouble if he gets hit with serious inflammation again.I don’t know anything about what the pH of water would do. I don’t watch it and my assuption is that the food you eat is what matters most (extreme situations excepted). And I don’t think it’s the pH as such which matters. But possibly my assumptions are wrong. In priciple, I don’t see why you couldn’t put enough minerals in water to make a difference.
It’s tawrikt. Or Tauriqt. The spelling is irrelevant. You’re not supposed to write it on stuff anyway. On the contrary, free men write on it.
I have trouble making sense of the stars in your words.
I really think the guesses you’ve taken in your previous post were sensible. But your guesses may turn out to be wrong, same as mine. What more is there to tell?
Besides what I already told you ealier, I mean (like: doses above 80mg aren’t very well tested so I wouldn’t rush into 120mg no matter what dishonest people claim about the safety of that dose).OK, now that I have a bit more time there’s one thing I see I could add: an attack might raise your SUA as well as lower it. My guess is that attacks tend to raise your SUA when it’s low thourgh dissolution and lower it when it’s high through antibody-driven precipitation (your SUA on 80mg febuxostat or more would in this context of course be considered low).
I should also add: blood tests vary randomly. Yes, getting the results you’ve gotten through purely random variations isn’t very likely. But random variations don’t have to be pure. You’d need more than one elevated result in the same circumstance before you could claim (even tentatively) to have grounds on which to explain away such outliers. Were the circumstances of your May test similar in any way?I don’t think it’s about the weekly dose actually. I merely brought it up as a possibility to question my own conclusions. I go through such mental exercises because like most people, I’m prone to confirmation bias.
Yes, the UA elevation could have something to do with the pain. The elevation could have contributed to the pain or be merely an effect.
I think that going back down to 90mg is a waste of time since you’re already doing 100mg, especially given that disappointing test result.
re: “The commercial side of things applies to everything.”
It’s common for folks in medical research to have altruistic or simply scientific motives. Morally defunct bright people tend to choose more profitable careers. I’d trust developers over those who are only bright enough to profit off the work of others (and in this case, who are so unsrupulous as to call it “our product”).
There are Adenuric tablets featuring a score line out there. But they kept the biggest lie for the punchline: “We hope this information proves useful to you.”It very much sounds like you’re suffering from some kind of arthritis (most likely gout).
But you don’t want this misery to drive you to neglect a different problem (having more than one health crisis at a time is a thing). Annoying infections getting around at work is also a thing that happens obviously. If you were having a drug reaction, it’d get stranger and worse over time and I very much doubt it’d hit you after you’ve been standing or walking for too long.In case there was a misunderstanding, you can get constant low-level inflammation plus regular flares without medication. It can basically turn you into an invalid. Medication could trigger it I guess but if you’re prone to this type of gout, not taking medication would in time have gotten you to the same place.
I should also add that I don’t recognize the exact symptoms you’re describing but that’s not surprising.It’s most likely just inflammation considering you’re suffering from this in the evening or after standing but make sure that’s not hiding something which looks more like a skin disease or an allergy (in that case, get it looked at because it might be a rare but nasty side effect of the drugs you’re taking).
Everyone is different but you’re not totally in the dark either. One thing I can tell your is that you are looking at several months during which you have a significant risk of experiencing a serious attack. By serious, I mean crawling. With enough anti-inflammatories, you might be able to stand on your feet but what you’re describing isn’t a proper attack but more like a chronic condition so it’s harder to tell how long that could last, especially without colchicine or corticosteroids. Others have suffered from something similar for quite a long time (supposedly it’s uncommon but it doesn’t seem all that rare based on what people post here).
Hopefully getting your uric acid very low might put a stop to it sooner. So if it hasn’t stopped after a few more days, I’d try 60mg or more. I’m not sure more than 60mg would help but given your test results, sticking to 40mg for a while is only worth doing if that keeps the symptoms at bay somewhat. But if you feel 40mg is as bad as 80mg, staying on the lower dose is only going to make your recovery slower.
