February 13, 2019 at 6:10 pm #8800
Hi all, new to the forum. I had my first attack in my big toe about six years ago (age 42-43), had an attack per year the next three years (managed with Colchicine), then nothing for two years. I all but forgot about my issue for that two years. Last year (January 2018, approaching age 48), I made some non-gout related choices to exercise, lose weight (by cutting carbs), and improve my overall health. After losing 25 lbs in four months I had a bad gout attack, first in two years, obviously related to an increase in protein and loss of weight.
Since the attack I’ve been flaring almost weekly, probably stuck in that “Gout Hell” phase I’ve seen described here. When I had my bloodwork done last May my UA was 8.3 mg/dL. From that point on I cut meat, fish, and alcohol consumption by about 75%, I’m very disciplined with my diet, I eat high quality natural foods, good carbs, plenty of dairy for protein, and lots of veggies, and I hydrate well consuming at least two liters of water daily. I have continued to drop weight as well and I’m now down about 40 lbs, low-impact exercising regularly, and maintaining well. I had bloodwork done again in January 2019 and my UA came in at 8.0 mg/dL, so big dietary changes only resulted in a small decrease.
It was a rough year, managed with Colchicine for flares, so I decided to start on Allopurinol after much internal debate. My General Practitioner gave me prescription for 100 mg daily, 90 pills to start, set for refills every three months. I’ve been on it for two weeks now with no noticeable side effects other than maybe some minor drowsiness. My questions are in regard to dosage and follow-ups: My GP was pretty unclear about whether to increase dosage after a period of time and how long to wait before having my blood tested again. I know 100 mg is considered to be a minimum dosage, and call me impatient at the prospect of waiting three months to track progress.
What is the recommended time to give the drug an opportunity to have an effect before re-checking SUA levels? Also, are the effects of Allopurinol cumulative over time, or do SUA levels have a tendency to flatline with a particular dosage? And if so, is there a typical timeline for how long it takes to know it’s not going decrease UA further at a particular dosage?
Thank you in advance for any input, I’m looking forward to having a place to help track progress!
February 13, 2019 at 6:25 pm #8801
I’d also like to add that the flares over the past year have moved to other joints, my second toe in the same (right) foot and my right thumb joint.
I’ve also been taking 1000 mg Vitamin C daily as it’s been shown to decrease SUA by an average of 10%. Helpful possibly, but not enough to lower levels significantly for someone with typical gout numbers.
February 13, 2019 at 8:36 pm #8802
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.
February 14, 2019 at 6:10 am #8803
Thank you for your response! I’m going to call my doctors office to follow up very soon. I’m not even sure if the doctor meant to wait three months, it’s more that I was concerned there was no follow-up plan in place as of yet. I’m also not convinced my GP is any kind of gout expert, so I wanted some opinions from people who have been through this.
I have come to know now that the low carb thing is bad for a gout sufferer, it had just been so long since I had any symptom or problem that I pretty much forgot, and of course wham. I lost the initial 25 lbs in the first four-five months of last year, and 15 more in the eight months since. Pretty much at my target weight now, maybe another couple of pounds by summer just for good measure. The motivation to lose the weight was because I had hit an all time high over 2017, 10-20 lbs over my adult average, I’ve never been anywhere near morbidly obese but didn’t want to approach 50 years old being that heavy. Overall, still very glad I have taken the weight off.
I’d like to add, just to keep my history clear for informational purposes, that I am in excellent health otherwise. Blood sugar, liver and kidney function, etc are all spot on, prior to starting the Allopurinol anyway. Gout aside I feel fantastic, and I’m in better shape than I’ve been in years.
And I guess I’m not exactly clear on the definition of “Gout Hell”, I just feel like I was stuck at a volatile UA level or saturation point of some sort where I was flaring pretty much weekly, not full blown excruciating or debilitating attacks thankfully, but uncomfortable and worrisome nonetheless. Also thankfully, I respond to Colchicine well, and I only take it in response to a flare or attack, not regularly as a preventative.
I’m also still looking for some thoughts on how long a certain dosage of Allopurinol might take to establish a new baseline SUA and/or how long to wait to decide if dosage needs to be increased.
February 14, 2019 at 6:34 am #8804
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”.
February 15, 2019 at 5:05 pm #8805
I made a follow-up appointment with my doctor right at the four week mark to schedule the bloodwork, which I will get done within a couple of days of the appointment, so I should have my first results by five weeks on the medication. Four weeks seems to be my doctors preference, and at this point works for available appointments compared to my work schedule anyway.
Fingers crossed for positive results, thanks again for your help!
Another question if I may: Is there any precedent for using higher doses to really lower UA and efficiently dissolve crystals more rapidly, and then lower to a maintenance dosage for long term prevention?
February 16, 2019 at 4:46 am #8806
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).
February 16, 2019 at 5:34 am #8807
Your advice and wisdom are truly appreciated. I already had it my head that if needed I’d only go up 50mg if my levels don’t come down enough on 100mg, at least until I have a month to see how that worked. I’m secretly hoping 100mg will do the trick, but I’m if not I’m really hoping it’ll be less than 300mg. I hate taking medication of any sort, and I really want to minimize the stress on my liver and kidneys.
Just to be clear, once levels have dropped and crystals have had time to dissolve, I’m looking to stay anywhere between 5-6 mg/dL? Is anything under 6 considered to be too low for crystal formation/accumulation?
February 16, 2019 at 6:45 am #8808
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.
February 18, 2019 at 8:45 pm #8811
Fine tuning my questions and curiosity a bit… They say diet only accounts for 1/3 of SUA, they rest is produced by the body. I’ve been pretty good with my diet, not saintly, but good overall. If I am gauging my Allopurinol dosage under a purine conscious diet, how should one take wanting to get closer to a normal diet into account eventually?
I do understand that I should never overdo it or go totally off the rails with my purine intake, but I have read that many people say they’ve returned to a normal lifestyle after getting their UA under control with Allopurinol. What’s the perception on diet in relation to dosage around here?
February 19, 2019 at 3:17 am #8812
Perceptions are all over the place. Really, I wouldn’t say most people are trying to be perceptive. Instead, they’re trying to justify the diet they want to have by any means necessary. And most people have very little dietary knowledge, including doctors. The scientific research is also scant and the published data inadequate. Diet is effectively a religious matter.
I’ve seen enough people killing themselves slowly with alcohol, meat and sugar that I’m kind of past caring. I remember a long-dead relative’s notebook about how he was poisoning himself better than his face because simply quitting the stuff was unconceivable.
So yeah, I’ve known people quite a few people who had (or are still having) a “normal” liefstyle on allopurinol. Certainly most people can control their UA while indulging. It simply takes a bit more allopurinol than would otherwise be necessary. The issue is, how does your liver like it? Side effects are more complicated than just the liver of course but be mindful that combining allopurinol and alcohol is going to have implications beyond UA over the years.
February 19, 2019 at 5:04 am #8813
Hm. I do eat very healthy, not much of a sweets eater, I don’t drink sweetened beverages at all, and I’m by no means a problem drinker. I enjoy a few drinks a week, and I’d like to not fear eating meat for dinner a couple of times a week. I’ve long since all but eradicated processed or artificial foods and refined sugars from my life, autonomous of my gout issue. Now that I’m taking my gout treatment more seriously, I’m also hyperaware of my meat and beer related purine intake. I was just curious how strict one needs to be when treating the problem with medication vs not.
I know nutritional science is a lot of speculation, but I do consider myself to be more savvy than the average person on the subject. You could say I’m hyperaware of my nutritional intake in general as it’s a big part of what I do for a living. I guess I was hoping for a more scientific correlation between Allopurinol use and dietary SUA, but it’s likely that kind of information doesn’t exist. Wishful thinking I suppose.
February 19, 2019 at 8:01 am #8814
Yeah, I’m not aware of any real research on the issue. It doesn’t seem like a very productive research topic really since allopurinol can cure almost every gout patient who can tolerate it and its dosage has very little scientific basis to begin with.
Purines aren’t a big factor compared to the uncertainty regarding how low you should try to get your UA. Alcohol as such (not the purines in alcoholic drinks) is more of a problem in my opinion, as are nutritional deficiencies which can, together with allopurinol and excessive purine intake, contribute to kidney problems in the long run.
You can be much, much less strict with your diet after successful treatment. Again, the side effects of the drugs are the main concern, not gout attacks. In the initial phase of tratment, while you are still experiencing gout symptoms, I would recommend some caution but even at that stage, there’s little point in being very strict.
As long as you tolerate allopurinol well, you can eat meat without fearing gout. No question. Heart disease, kidney disease and so forth are much more serious concerns. Meat is only a serious problem for gout if you aren’t getting treatment or if you can’t moderate your consumption.
My turn to ask you a question since you care about your purine intake: where do you get informtion about the purines contained in your beer?
I’m not trying to justify consuming beer since I haven’t had a beer in decades but there’s bound to be great differences between beers and I strongly suspect beer is generally nowhere as bad as it’s made out to be. I have some idea of how dangerous beer yeast is but I don’t think I’ve ever seen useful data about actual beer.
February 19, 2019 at 4:14 pm #8815
Taking this all with a grain of salt, alcohol is known to inhibit excretion of uric acid, making it a generally unwise choice for a gout sufferer. Beer can be a double whammy because it also contains varying levels of purines. Lower malt beers, such as Pilsners, have significantly less purines and are generally lower in alcohol than ale styles. Numerically, any beer doesn’t seem that bad under analysis, but purines are measured by 100 g servings, making a pint of beer (especially ale style beers which are considered a “medium purine food” by 100 g serving) five “purine servings” in one glass, add up quickly.
Some opinions also believe that Lager yeast (cold, bottom fermenting) has substantially less purines than Ale Yeast (warm, top fermenting). Lagers also tend to be lower in alcohol, 4-5% on average, where ales can go as high as 15% naturally, although 5-8% is a good average. Every beer variety in the world is either a Lager or an Ale, depending on the yeast strain. And again, some opinions even look at filtration because filtered beers contain less of the yeast lees (dead yeast particles) which physically contain more purines. Finding any information online is like finding a needle in a haystack, and of course every beer is different, and I’ve yet to find definitive purine information for specific beers.
I’m a huge fan of the American Craft IPAs, strong, unfiltered Ales which are the only thing I can say for certain are triggers for flares. I’ve been able to enjoy a few Pilsners with no discernible effects on flares at all.
Wine has virtually no purines, and is mostly known to be problematic only in relation to excretion, and of course wine is most commonly paired with food, and we all know the old saying, “red wine with red meat, white wine with fish…”. So wine itself isn’t a purine problem at all, but it makes the UA derived from that steak or shrimp you ate with it that much harder to pass. In theory, some wine consumed on an otherwise low purine diet shouldn’t be problematic in terms of dietary SUA.
Again, all of this “in theory”.
February 19, 2019 at 6:53 pm #8816
It’s not clear what information you have about purines or where it comes from but it seems you’re using some kind of high/medium purine list. These are notoriously bad.
Beyond the obvious (even if the lists were based on good data, you’ve got to draw a line somewhere to make such lists while your body doesn’t care about the line between “high” and “medium”), purines too are merely a category and abstractions do not increase uric acid. Particular purines increase uric acid and different foods contain varying mixes of purines. So useful data about beer (or anything else) would tell you how much (a number, not “high” or some other word) hypoxanthine, xanthine and adenine there is in your beer.
This is why beer filtration matters. Dead yeast particles are a problem not so much because of the gross amount of purines but because of the specific purines they contain. Generally, non-plant cells are a problem.
Wine consumed with a low purine diet does increase UA. Whatever you eat, you’re producing uric acid. As you noted above, dietary purines are significant but are typically only a small part of the problem.
Traditionally, gout sufferers were warned against white wine in particular which (sometimes? again, I’ve never seen useful data about this) contains diuretic compounds other than alcohol. You’d be surprised where you can find diuretic compounds (some Turkish pastries for instance).
February 20, 2019 at 5:07 am #8817
The couple of fairly relevant looking purine lists I have looked at do list by how much of each purine various foods contain and/or a number relative to the amount of uric acid the food produces. Not that I know exactly what the numbers mean, I only assumed these were good for watching for an overall intake balance or putting foods to scale. Case in point, common mammal muscle meats (beef, chicken, pork) seem to be pretty close in purine content, yet many gout diet guidelines espouse lean meats such as chicken as better options. Meanwhile, a meat like pork belly which is very high fat actually has less purines than lean chicken breast.
I’ve also read that some people obsess over higher purine vegetables and legumes (spinach, asparagus, lentils, etc) and have claimed them to cause attacks, while other sources say to basically discount any plant derived purine intake. Common sense tells me one should probably worry about plant based purines in conjunction with the bigger offending animal based ones and/or alcohol intake. Cumulative effect would make sense to me.
And just for the record, I assumed that clinical studies that have taken the time to analyze purine contents of foods for hyperuricemia/gout related studies have done the legwork of pre-distinguishing the bad purines for us. Of course we all know the old saying about the word “ass-u-me”.
So if tracking purine content/intake isn’t a wise option, what guidelines would you suggest?
I also just saw in another post you suggested “eating foods known to lower uric acid”. I’ve only seen clinical evidence for one thing consistently lowering uric acid in trials, Vitamin C. And that is only by a percentage too low to be of any real relief to someone with hyperuricemia.
February 20, 2019 at 7:45 am #8818
This stuff is quite complicated and there’s apparently not much motivation to research it. Basically, there are drugs that fix the problem so why bother?
I’m sorry to say that the studies actually looking at purines numerically (which isn’t the norm) rarely differentiate properly between purines. Outside of lab-type reasearch I’ve never seen a dietary study that actually does this. Which isn’t to say that there are no such studies. I didn’t look very hard and I’m not an expert.
I’ve seen fairly reasonable review articles, very focused clinical-type studies (here’s how these new food products or this specific diet we designed affects uric acid) as well as epidemiological-type studies reliant on self-reporting but nothing clinical about the broader dietary issues. Even the basic studies I found looking at fast human response to artifical intake of various compounds are quite old.
It does make sense to track purines but on the one hand most lists aren’t very useful and on the other there are lots of non-purine factors so it doesn’t make sense to focus too much on purines.
In the absence of adequate data, the basic rules I would propose for purines (even though they aren’t fully reliable) are:
-limit consumption of the bodies of organisms other than land plants, anything made from such as well as mystery foods (if you aren’t using an effective allopurinol dose or equivalent, make that drastically limit)
-try to look up the specific purine content (hypoxanthine and so forth) of the land plants you regularly eat in large amounts and look at alternatives in case it looks like they might be a problem
-if you’re eating foods other than land plants, also take a look at some of the very worst foods such as sardines and avoid them as much as possible
You are correct that chicken isn’t better than red meat in terms of purines. Indeed, if you discount organ meat, chicken is generally worse. But again, there are other concerns than purines such as cholesterol, hormones, allergenic compounds and heme iron.
Maybe this is good time to stress purines would normally not trigger gout attacks (unless perhaps you grossly induldge). They are a major factor in causing gout in the long run but triggers are something else. This distinction is poorly understood, including by doctors. Diurectics, certain fats and allergenics for instance might trigger attacks.
This is why some people might get attacks after eating fatty mammal meat but not chicken. From this they might incorrectly conclude that chicken doesn’t cause gout.
To be clear, after successful treatment triggers won’t do anything.
As to foods known to lower uric acid, dairy is the best known case. There are actually “natural” UA-lowering pills containing dairy extract for people who don’t want to consume actual dairy. For the same reasons chicken might be recommended over red meat, guidelines recommend consuming lots of low-fat dairy such as skimmed milk and yogurt made from such as opposed to cheese.
There are a few uric acid-lowering compounds occuring naturally in other foods (more so in herbs). This is why cherries are traditionally recommended to gout sufferers for instance. I think many berries have the same stuff. As you say, vitamin C also has an effect so I guess kiwi fruits could be said to be an UA-lowering food.
In some cases at least, alkalyzing urine also lowers uric acid. So one might argue many vegetables and even some fruits lower uric acid on that account.
February 20, 2019 at 5:09 pm #8819
All great information! Thank you.
It’s funny that cherries, maybe the oldest and definitely the most mentioned “gout remedy”, have virtually no clinical evidence to back them up. In fact the best information on cherries and gout I’ve seen surmises that they’re most useful as an anti-inflammatory from their anthocyanin content.
I was also under the impression dairy was recommended more so for its use as a low purine protein replacement, not so much because it “lowers uric acid”. Helping to lower uric acid through substitution, not inherently. I think the low fat dairy recommendation comes from the summary assumption that most gout sufferers are generally, overweight, have high cholesterol, or have other conditions such as diabetes. If these aren’t the case and weight/other health factors aren’t an issue, I wouldn’t concern myself with “low fat”.
Talking about fat, fats were much maligned during the second half of the Twentieth Century. People started getting fatter in conjunction with consuming mass produced, processed, preserved, and heavily sugar laden foods. Refined sugars were the culprit, but fat and its additional 5 calories per gram, got the blame. As someone who is in good shape and eats an excellent diet of natural, whole and nutritionally dense foods (now with my hyperuricemia taken into account too), I embrace good quality fats and incorporate them properly into my diet rather than avoiding them.
A bit of nutritional advice to anyone who cares to listen: Avoid processed and modified fats as much as possible. Soya bean oil (which EVERYTHING preprepared is made with!), canola oil, “vegetable” and corn oils, and butter substitutes such as margarine and other substitute spreads, all terrible. These fats are so heavily processed with heat and chemicals that the body fails to recognize them as the vital macronutrient they should be, and instead treats them like toxins. The body is confused by them, and anything the body doesn’t know what to do with gets stored as, you guessed it… Fat! Body fat. Much the same as High Fructose Corn Syrup and many preservatives, which are also in almost everything “pre-made”, they confuse the body and get stored in fat cells.
February 20, 2019 at 6:28 pm #8820
Yes, dairy provides protein but extracts containing (virtually) no protein also lower uric acid. It’s one of the best-established relationships in the field along with the effect of alcohol.
As to cherries, have you checked Jacob et al. (see the footnotes of the British guidelines)? Possibly it’s a junk paper but some expert thought it was worth referencing. I haven’t read it myself. It’s not the only one claiming an effect on uric acid anyway.
The fat metabolism does play a role in gouty inflammation… again, it’s not a cause of gout but modulates its expression. Keith has a page or two about this on Goutpal.
There is also as you mention the fat-related comordities of gout. Though it obviously isn’t relevant for every individual, certain fats are maligned for a reason regardless of the popularity of some truther barguments.
On top of that, there is weak evidence suggestive of fatty diets contributing to high uric acid. Carbs other than fructose (and of course sugar) seem to give better results in studies. Anectodally, many have come to this forum saying they developped gout after going on a low-carb diet. But this may of course be due to excessive protein intake or simply purines.
February 21, 2019 at 6:14 pm #8824
I don’t love drinking milk, never a fan, but it looks like I’ll be forcing down a glass of organic skim milk a day. Haha! Thanks for that info, there is indeed plenty out there on the subject, oddly hidden in plain sight. I usually drink a big glass of water both before bed and first thing after waking in the morning. I probably sub one of those out with the milk.
I’m a huge proponent of natural eating. Part of the problem with modern diet in my opinion is it’s existed for only a short span of human history… Refined sugars and oils, modified starches, chemical preservatives and artificial colors and flavors. Mother Nature never intended for us to rip the sugars or fats out of plants with heat and/or chemical processing while discarding the other nutrients, fibers, and roughage included. How we treat our foods and eat them has become totally counterintuitive to millions of years of evolutionary design.
In regards to cooking fats, I’d recommend expeller or cold pressed safflower or grapeseed oils for higher temperatures (sautéing, searing, deep or pan frying). You want “neutral oils” for higher temperatures that don’t have compounds that will burn and turn carcinogenic with high heat. “Neutral oils” are also relatively flavorless, which is good for recipes where you don’t want added distinct flavors.
For non- or gently cooked fats I’d stick to cold pressed extra virgin olive oil and other expeller pressed nut or seed oils like avocado, coconut, sesame, walnut, peanut, etc, accounting for their distinct flavors where you choose to use them.
Cold pressed oils are the most natural and healthiest, with minimal heating. Expeller pressed is done at a higher temperature to extract more oil, but with no chemicals and still below what’s considered to be heat levels of toxicity, not too bad. Solvent pressed are the bad ones, oils extracted at even higher temperatures and with chemicals for the highest yields, and how a vast majority of your mass produced vegetable and seed oils are done. Not good for you at all!
I’m also all for using animal fats, health permitting (calorically they’re the same, so it really just boils down to cholesterol intake). The body is far better designed to digest animal fats, which are very natural and we’ve been eating as a race for our entire history.
February 27, 2019 at 7:45 pm #8826
Off topic, I know… haha.
I have my first blood test scheduled tomorrow since starting 100mg/day Allopurinol four weeks ago, trying to be prepared with as many questions/observations pending results, and much of what I see online lends itself to the thinking that you find a dose that works, and stick with it forever.
So does anyone have any history of varying Allopurinol dosages throughout their treatment? For example: Gauging an initial dosage of 300mg, but eventually lowering to 100 or 200 as a maintenance dosage? Or bringing it down with a higher dosage and then lowering to a maintenance dosage.
Or the other way around, finding a dosage that worked, but eventually having to increase because that dosage stopped being as effective for one reason or another over time?
I guess I’m curious if the effects of the drug tend to improve or decrease over time. In regards to SUA numbers, is there a tendency toward a long term positive cumulative effect, or toward building up a resistance negatively.
February 27, 2019 at 9:26 pm #8827
This is going to be a frustratingly slow process so there’s no point in trying to ask all the questions right now.
The only urgent questions relate to potentially serious side effects, especially if you noticed anything strange happening to your skin, lips and so forth. If the blood test comes back with strange values, that would of course also raise urgent questions.
Like I said, changing one’s dose is in the guidelines so it’s certainly not unheard of! In your case, the motivation for doing something a bit more complicated than usual would be the amount of time you allowed your gout to fester without treatment.
Most doctors are terrible at treating gout so imitating common practices isn’t a very good idea.
Initially, the effect of allopurinol often seems to increase over time but that’s probably not due to an increased effectiveness of the drug but to negative feedbacks. There are many confounding factors so you may not observe this increase.
There are also diminishing returns (or in other words a diminishing marginal effectiveness) with increasing doses but that’s a different issue.
Over longer periods, changes in your body’s ability to eliminate both uric acid and allopurinol metabolites will affect your SUA even if your lifestyle and diet didn’t change. It would be very difficult to tell whether there is a small change in the effectiveness of drug itself. I’m not aware of any conclusive results and the default assumption should I think be that the effictiveness doesn’t change over time.
March 7, 2019 at 3:16 pm #8840
I just got my first blood test results after being on 100mg Allopurinol for four weeks. My uric acid is down to 6.4 mg/dL from 8.0 in January and 8.3 last May.
With a target level of <6.0 for gout patients, I’m guessing increase dosage to 150mg and check again in about four weeks?
My other Comp Metab Panel numbers have remained consistent over the three tests and are in safe range. Overall, I am pleased with these initial results!
March 7, 2019 at 6:07 pm #8841
In my opinion, in your situation there’s no need to check again after an increasing your dose to a mere 150mg. It would be ideal to check very often but lots of doctors would have you go straight to 200mg anyway. So I think increasing first to 150mg and then to 200mg after only two weeks and without waiting for another blood test also makes sense.
And like I said above, I think it would be reasonable to target 5 rather than 6 in your case which is why I had already dismissed 150mg as a dose you would want to settle on. One always need to wait for several blood tests to confirm one’s guesses but 200mg looks like a more reasonable dose for you.
That said, as long as you seem to tolerate well the drugs targetting symptoms, there’s no urgency to increase your dose so you could justify being very careful. The one important thing was not to delay further the test you’ve just done. Since everything seems to be going smoothly, I don’t think there could be a strong argument against the details of any dose increase schedule you or doctor(s) might fancy at this point.
March 7, 2019 at 6:47 pm #8842
Hypothetically, if 100mg brought my UA down 1.6 mg/dL, and if adding 50mg brings it down half that again, it would put me around 5.6 mg/dL. Why would you advocate 200mg? Not so much questioning your judgement as looking for the reasoning behind it. Is an SUA of 5 really going to make that much of a difference vs maybe a 5.5?
I definitely do want to remain at 150mg for the moment and have it checked again in four weeks or so. More out of curiosity and for accuracy than concern this time.
March 7, 2019 at 7:24 pm #8843
Sure, you can afford to take your time.
Each additional mg has less effect so your estimate is too optimistic. On the other hand, SUA values often keep dropping a bit even if you don’t increase the dose during the first month or two. So yeah, 150mg might perhaps bring you down to around 5.5. But be aware there is some noise in test results so the next one could potentially be a disappointment. Averages are the most informative numbers.
As stated above, the main reason to aim at 5 (a pretty random target but you have to pick a number) would be the amount of time you left your gout to fester. This means you’ll probably be stuck with gout symptoms for quite a while and a lower SUA should theoretically both help keep these symptoms fairly mild and speed up the curing process a bit. The evidence for this is quite weak but that hasn’t stopped our host talking about taking the maximum dose without regard for SUA values. For what it’s worth my doctors don’t care much for targets either and figure that lower is better. At least there’s some support for using 5 as a target in the guidelines. In the end, you’ll have to observe the effect of the therapy on your symptoms over several months (keeping in mind the cognitive biases we are all subject to) and make an educated guess about what target might be right for you.
March 22, 2019 at 12:37 am #8846
I am also a fellow gout sufferer …aargh
1. 48 years old
2. First attack in toe joint
3. Could not walk for 5 days intitially(Atttack lasted 1 month)
4. Took Indocid (Anti inflammatories 3 times a day for 2 weeks)
5. This did not work so well so took predisnone for 1 week – immediate relief
6. Then Dr put me on 100mg Allopurinol and 1 Colchicine tablet daily
7. Been taking this medication for 10 days now and swelling seems to be going down and pain ok now.
8. Skins is peeling on joint area and reddish/purplish
9. Pad of index finger sore ? , leg bone above ankle sore , elbows sore ?
Is this because the Allopurinol is getting rid of crystals elsewhere in my body that were not active soon , not sure
10. Only drink water (3litres), coffee (1 a day) , tea sometimes & sparkling
11. Eating no meat, but some fish and chicken
12. I have high iron, not haemachromotosis, but Dr said two years ago to give blood but ignored her, could high iron contribute to gout , I have heard yes
13. Waiting for Blood place to call me to give blood
14. My friend got gout attack but only took Allopurinol for a month and then stopped and he has not has an attack for years.
12. Good web resources
13. So it’s been nearly 1 month now, swelling has gone down but not cokmpletely
14. Aim to only take Allopurinol and Colchicine for 1 month, but according to the above resources , it takes 3 months for the number of crystals to halve
and then from 3 months to 3 years to get rid of them completely
So may need to take the meds for at least 3 months.
14. So many factors to consider
b) High iron
d) Body weight(fat)
f) Specific gout triggers
15. Effects of Allopurinal and Colchicine I have had
a) Hot flushes
b) Skin went oily for a few days after taking , acne
c) More joints became achy (Finger,elbow,leg)
d) Funny taste in mouth
e) Upset stomach first few days not to bad
f) Not feeling 100%
g) Cough I had has not recovered (Wheezing like athma)
So in conclusion it seems diet only reduces Uric Acid levels by 1mg
Medication is the answer
Just like others dont want to rely on medication all my life
My friend has been taking Allopurinol for 30 years now , and he says he stopped it once, major attacks
I cant afford to stop walking for a month !!!
So just like you I would like to know long term side effects on kidney etc.
Apparently studies show that after long term Allopurinol use , UA levels go back to what they were 1 to 2 weeks after stopping.
The reason why people may not be getting attacks is that the uric acid “store” has been depleted and needs to build up again before the crystals start forming again (Curse you damn crystals !!)
But those who do get attacks after stopping , maybe crystals still exist and get re-activated ?
One of the articles analogies was quite good , UA crystals are like unlit matches in your joint , unlit no worries , then once it is triggered , wildfire and then the body sends white blood cells to fix it which causes inflammation and extreme pain
So colchicine to dampen the matches and Allopurinol prevents new matches from getting created.
But at the same time as the overall UA level is being reduced in the body , the body will try increase and then suck those crystals or dissolve them out of the joints, that’s how I understand it.
So we need the meds to do that.
The thing is what happens if you have naturally high UA like I have naturally high Iron levels !!
How can you reduce without the meds besides diet and exercise.
Maybe diet and exercise are not enough.
Anyway hope this helps everybody and happy to chat.
I really empathise with all on the forum.
This was the most painful thing I have ever experienced in my life and completely debilitating , I had to work from home for nearly a monnth, but some people can’t do this and could lose their livelihood !!
From the 4 friends I have spoke to which are on Allopurinol for a long time now , none of them have had an attack while on the meds , so very good , the issue is that not happy with taking daily meds forever !!
a) Buy a water bootle and put it on your desk to regularly sip water
I bought a insulated Kleen Kanteen one excellent on with a push in nozzle
Dr said dehydration can cause gout
b) Always take meds with food to prevent upset stomach
c) Swimming is a good exercise for aerobic exercise if you cant walk
But my foot was still a bit sore kicking the water !! so sensitive.
d) Buy/wear sandals that dont touch your toe joint , I found that closed shoes make your gout area expand like a balloon
Thanks for all your posts guys & gals the info is really valuable !!
March 22, 2019 at 12:34 pm #8847
Hi Fire Titan,
You volunteered a lot of information but not your UA test results. It is NOT the case that simply taking allopurinol will eliminate crystals after a number of months. You must also take enough allopurinol… and how much is enough depends primarily on UA test results. 100mg a day is typically not enough. Maybe you understood this already but I wanted to make sure there was no misunderstanding.
Likewise, dosage also affects the effectiveness of anti-inflammatories.
Lots of people have had attacks on allopurinol. It seems you started very soon after you experienced your first clear gout symptoms so you are less at risk and a sufficient dose should cure you quicker than many others.
About side effects, it really depends on the individual.
You should AT LEAST get your your liver and kidney function markers tested. These are fine in most cases but not in every case! Allopurinol is a harmful drug to some people and a deadly drug to a few.
But this is not all about blood tests. The side effects you feel also matter and the ones you listed are somewhat worrying in my opinion.
I’d say the first thing to do is to determine which drug is causing this. AFTER getting a blood test, is it possible you could stop colchicine and take prednisone instead for a short while to see what that does to the side effects you’re experiencing? Ideally, you’d want to test allopurinol alone but that may not be practical depending on your ongoing inflammation.
There are alternatives to allopurinol nowadays if it turns out you are suffereing from persistent side effects. So don’t keep taking a drug which slowly grinds you down.
And if it turns out you aren’t getting serious side effects from either anti-inflammatories or colchicine, consider taking both to suppress gout symptoms (obviously you want to discuss drug combinations with your doctor before trying them). Some people have taken quite large amounts of both drugs which is obviously not ideal but as you’ve noticed gout can be debilitating so some people are motivated to do whatever it takes to suppress the symptoms.
The effectiveness of changes in diet and lifestyle also vary a lot between individuals. I was able to lower my UA by more than 1mg.
Fish and chicken are also meat, and no better than mammalian meat as far as UA is concerned. Avoiding mamallian meat might have an effect on your iron however but research this carefully before jumping to conclusions.
March 23, 2019 at 11:09 am #8848
Thanks for the rapid response.
Yes I don’t have a copy of my uric acid levels, but the Dr said it was
6 and normal was 5 , so only one above ?
Yes the Dr said 100mg for the first month, then increase to 200mg for the next month , then to 300mg , so I understand the amount is quite important.
Yes will get this tested after the first month of allopurinol and colchicine
Yes I want to stop the Colchicine, so just waiting for the 1 month mark.
New symptoms after taking both for 11 days
a) It seems my inside leg bone by my ankle is sore when I press it, not sure I dont think I knocked it
b) My index finger seems to have a bony raised portion that I did not notice before and yesterday my left index finger was sore when I was typing on the keyboard.I compared it to my right index finger and it was not so prominently raised.Not sure if this is the allopurinol somehow activating crystals in my index finger joint ?I hope not
c) My inner elbow joints are sore, these were sore for 3 months before but I put that down to to many bicep, tricep curls at the gym ,maybe not maybe its the crystals, they seem to ache more now after the medicine
d) I took 3 x 5 day courses of predisnone , one course when I had Tinnitus, the second course when I had a skin rash and the third course for this gout.
So I dont think I want to take anymore.This was over a few month period.
e) My inflammation is coming down a lot in my toe joint , peeling skin still a bit purplish red, and still sensitive when it touches my shoe and expands when I walk for a long time. But at least I can walk now.
I still get sharp shooting pain sometimes, but its bearable.
I’m not expecting this to go away fast maybe after a month of meds maybe?
f) Not sure about the side effects if they are serious , you say they warrant further investigation ?
g) Yes variability of UA level reduction must depend greatly on the individual, but from ,my short research it seems that it does not reduce by much or trying to maintain such a strict diet is very difficult.
I don’t drink alcohol at all and do gym at least 3 times a week , but I think how the crystals formed was because my uncle has gout so genetic and I have been eating mainly meat and chicken for lunch and dinner with no vegetable days for a long time(years) so must have UA crystal formation because of this.
Also I drink soft drink maybe one a day , lemon lime and bitters or sprite , no pepsi or coke.And one coffee.
So my initial trigger for my first gout attack was
Day 1 :- Drank two glasses of champagne (I never drink)
Also ate a lot of “unknown” finger food at a school function
Day 2 :- Ate a pizza
Day 3:- Ate a 7 course chinese meal for my Moms Birthday !!
Day 4:- Gout Attack, could not walk excruciating pain !!
Yes diet is key , but I dont think I could live without some chicken at least 🙂
So I think my trigger was the alcohol, but it could of been the unknown finger food I ate, some kind of sea food.
So a question I have is how long do you have to take Allopurinol and Colchicine together for ?
I understand Colchicine is to prevent gout attacks and Allopurinol reduces the uric acid in your body.
The other thing is what are serious side effects ? of the meds and as you say which med is causing it.
I think the treatment length will depend on how many crystals you have and how your body responds to the meds.Not really keen to have a needle stuck in my toe joint to extract the synovial food , so they can estimate crystal number !!!
What about having an MRI? will this show the number of crystals or are they too small
I did have an X-ray but nothing comes up.
One thing for sure, without medication I don’t think the crystals will go away by itself.
If I eat like a monk for a long time maybe, but then what happens if your body has a natural tendency (genetic) to make high UA
I read that some vegetarians still get gout !!!, so must be genetic then if they dont drink any alcohol and stay away from high fructose.
So many questions, and your body is the guinea pig.
Anyway thanks for the comments, just counting the days when my foot is normal again !!
I did ask the Dr for another Uric Acid test after I dieted for 2 weeks after the attack , but my doctor said this too soon, so I could not find out whether the dieting had any effect on my UA levels.
But I will ask after taking the meds for a month and see what they have dropped to, the thing is even if they have dropped which they are sure to , the crystals still exist and this is the source of the pain.
March 23, 2019 at 1:10 pm #8849
Having joint symptoms where you never had any before (or only rarely) is expected when you are starting allopurionol.
But the big toe typically gets better quicker than this. Sometimes it lasts longer, especially with insufficient treatment.
2 weeks is not too soon to do a blood test but sometimes you’ve got to play along with your doctors when their ideas aren’t horribly wrong so waiting a little more for your blood test and allopurinol dose increase might make sense. But in the meantime perhaps you could see your doctor about a more effective treatment for your symptoms? Maybe you’re not taking enough colchicine. And if you didn’t get any side effects from Indocid, perhaps you could take it in addition to colchicine. The dose you took the first time wsa probably insufficient but, after being on colchicine for a while, you don’t need to take as much as would be necessary during the most acute phase of an attack and when there’s no colchicine in your system. Some doctors do not understand dosage (a gout attack isn’t a matter of life and death so they have more important things they need to know).
How long you’d need to take colchicine and/or Indocid (or similar) would depend on your symptoms. Unlike allopurinol, you can try to quit such drugs as often as you want. Worst case, you’ll get nasty symptoms.
And unlike allopurinol, these aren’t drugs you want to take every day for several months if you can avoid it (nevermind several years!).
As to the non-joint side effects you mentionned, all the investigation they might require is quitting colchicine. Colchicine has unusually strong side effects. They might even go away on their own while you are still taking colchicine.
But if they persist when you are taking allopurinol alone (or allopurinol together with a drug which has never given you such side effects), yes: I wouldn’t ignore them. Allopurinol is something you want to take for the long haul so you can’t accept the same side effects you’d accept for a drug you are only taking for a few weeks. It may be mere discomfort but it could also signal slow damage or simply a developing intolerance.
The main problem with diet is that most of the information you’ll find by looking around is worthless and that the useful information you can find isn’t comprehensive. When people aren’t told what reduces UA in the first place, naturally they will fail to achieve results.
Sticking to a diet tailored to lower UA isn’t very hard as long as you’re not an alcoholic. Giving up animal flesh is as easy as finding something else you like to eat. It might take some time (obviously you can’t simply yank something nutritious out of your diet without making other changes!) but it’s much easier than losing weight for instance (though losing weight is in some cases the main thing you’d need to do to lower UA!).
I wouldn’t overly concern myself with diet in your situation. You’ve already started allopurinol which works much better than diet. Some things still matter because they complement allopurinol but you’ll most likely be fine if you simply eat a healthy diet (with veggies and stuff) and avoid alcohol as well as other diuretics.
X-rays would only show something after years of pretty serious gout. MRIs are as I understand it not very specific (you wouldn’t ID crystals). Ultrasounds (is that the right word?) is another option which only shows the effects of crystals. Synovial fluid is very specific (it even discriminates between types of crystals) but hard to do correctly so can yield false negatives. I wouldn’t rely on any of these to guide treatment, only for diagnosis.
What works best apparently is DECT scans but that’s fairly new and not many gout sufferers can get them. That’s the one thing (besides blood tests) which could guide treatment effectively.
April 2, 2019 at 10:26 am #8853
Thanks for the comprehensive advice , greatly appreciated.
So using myself as a guinea pig after taking 100mg Allopurinol and 300mcg of Colchicine for 16 days , my toe stopped hurting about 80% better.
I saw the Dr and she recommended dropping the Colchicine.
The Colchocine was making me feel very unwell , made my skin really oily and acne prone.
I dropped the Colchicine and dropped my Allopurinol dosage to half (50mg)
I did this for 5 days with no impact.
Then for the 6th day I dropped to a quarter (25mg)
That night 2:30am in the morning I got a gout attack , first one in 46 days.
So I took 2 tablets of Indocid and one tablet of Panadeine forte to kill the pain
The next day I took 2 tablets three times a day of Indocid and back on the 100mg of Allopurinol again.
I understand that gout is a chronic form of athritis and the UA crystals may have take a year to form, so I suppose I cant expect them to vanish after taking a low dose of Allopurinol for 21 days.
But I was being very optimistic!!
So my strategy is to keep on taking the 100mg daily for 3 months and then check my UA or even sooner as you state.
I just felt I wanted to wean myself off the Allopurinol , but if the crystals have not dissolved then I will always be prone to attacks.
It seems though I am looking at a 3 to 9 month time frame if not more for the crystals to actually be dissolved.
Does that seem to be your estimate?, I know each person is different , and the amount of crystals they have in their body may be different.
And I suppose it also depends on your dose amount.
I am just trying to calculate when the crystals will dissolve and if they have totally gone, how I will check besides sticking a needle in my toe joint !!
But for now I have to deal with my 2nd attack, the pain is much sharper this time and skin is getting ultrasensitive again.
So the last time the Indocid did not do to much , but the predisnone did the trick immediately, If I don’t see results soon then I might switch to predisnone.
And you are right once I stopped the Colchicine I felt much better, its pretty potent stuff!!, So I don’t want to take it again, even though I have an attack now, but then again I did take it for 16 days in a row before.
April 2, 2019 at 11:33 am #8854
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.
April 2, 2019 at 10:34 pm #8855
Good to hear , I have never suffered any symptoms of gout before this attack, the only one thing I can remember is that after a big BBQ with lots of meat , my knees did feel a bit achy.But I though that was just old age !!
Just wanted to clarify your point about desensitizing your immune system, could you please explain that concept a bit more? not sure I understand.
Yes I wanted to take a blood test after 1 month of good diet but the Dr said it was too soon and UA levels take time to normalize.
But after this 3 month stint of Allopurinol, hopefully I can stop and then from that point till one month after of dieting they can test the UA and if it does not go up the it must be diet.
Yes I was trying to pinpoint what triggered the attack, I don’t believe it was food related as I have been good, the only thing I could think it was , was lowering the Allopurinol dose or the day before I went on a very long walk (12000 steps)
You are correct the Indocid tablets are 25mg and I take two three times a day
You are correct , it seems they take a long time to kick in.
Maybe thats why as soon as I took a predisnone tablet I had immediate relief not sure(That was a 5 day course 1 tablet a day)
Not sure I want to do the predisnone though over the past few months I have taken 3 courses of 5 days each (1 for tinnitus, 1 for skin rash , 1 for gout)
So I think too much
Today my foot feels much better although still swollen, it is much better than the first attack , but maybe I took the Indocid immediately as it came on as well as the fact I am on Allopurinol.
At least I can walk ok.
I think one more day of Indocid (On my second day) then I need to give my body a rest.
I took 2 x Panadeine forte on my first attack as I was in so much pain and that worked very well, the second attack I only took one tablet.
So yup , need to discuss with my Dr the overall effect in combination with my other meds.
Are you on any Allopurinol ? , how long have you had gout for.
I would like to know what your experience has been.
Thanks again for your comprehensive answers it is really appreciated, so good to chat to somebody who understands
April 3, 2019 at 3:29 am #8857
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.
April 3, 2019 at 6:19 am #8858
Ah thanks I understand now.
Yes it is difficult to estimate the timeframe before you are completely cured if that is really possible.
I am understanding now that this is a long term treatment, as I have never been on “lifelong medication” it sort of scares me.
Sad to hear your experience with the doctors.
I will keep your advice in mind, so need to do more UA and kidney/liver tests and see levels first after my first treatment with Allopurinol.
So 3 months may be too short , lets see how long it takes before my toe becomes normal again, its been 42 days since my first attack and my toe is still not back to normal again and now the second attack aaargh.
So 22 days on Allopurinol (16 days on Colchicine)
So only half the time I was on Allopurinol and the other half on Indocid and Predisnone.
Here’s holding thumbs.
By the way what area did you get gout in ?
Thanks for the speedy reply as usual 🙂
April 3, 2019 at 9:21 am #8859
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.
April 4, 2019 at 2:40 am #8860
Aaargh thats terrible.
I hope that you have it all under control now.
April 10, 2019 at 5:58 am #8947
I am back.
One of the side effects I have now experienced is extreme wheezing and coughing the last few days, I had to take my Asthma pump (Ventolin) about 6 times yesterday.
Going back to my gout diary I started wheezing 1 week after taking allopurinol , and so now I have been wheezing for 16 days now so not good.
Went to the Dr and she referred me to a rheumatologist,
The thing is the appointment is only next week and I desperately want to stop the allopurinol as it can’t be healthy to wheeze like this.
I dont have a cold or anything.
I read one of the rare side effects is wheezing and you should see your GP straight away if this occurs
So I asked what the alternatives are febuxostat(Uloric) , but my Dr seems to think that I will still get the wheezing, so she said I need to see the specialist to make that decision.
I really want to stop the allopurinol even though I know I have only been taking it for 1 month and the crystals cannot be dissolved yet.
So the choice is walk or breathe !!!what a decision to make
I had another uric acid blood test and kidney and liver function test as you suggested., so lets see what the results are.
My last measurement for UA was 0.51 and she said the normal is 0.42
Any ideas would really help 🙂
April 10, 2019 at 7:47 am #8948
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.
April 15, 2019 at 8:33 am #8964
Thanks again for the advice .
So this is what I have done
Wed(Day 1) :- Stopped Allopurinol
Coughed up phloegm mixed with water when going to sleep
(Maybe the lungs are clearing)
Saw Dr.Got UA Results
Urate has gone down from 0.51 to 0.40 (Normal range between 0.2-0.42)according to the test paper.
Although I am unsure what is high and what is low and as you say , normal may not matter.
Kidney and liver all good !!
I also took the test for the HLA-B 1502 gene just in case as I am Asian as this predisposes me to Stevens Johnson syndrome, but I will only get these results a bit later.
This is from taking Allopurinol for 1 month and no red meat , a bit of chicken and fish.
Dr said to see a rheumatologist to analyze alternative Allopurinol options.
Dr said maybe take 100mg of Allopurinol every second day ?
But let me see if I can just stop it.
Thur (Day 2) :- Foot feeling twangs of pain, not serious
Took 2 x 3 Tablets Indocid(Breakfast,Lunch & Dinner) (Just in case)
Wheezing feeling much lighter
Friday(Day 3) : At night twang of pain on foot
Took 2 Indocid after dinner
Sat(Day 4) :- Drove for 3 hours for Holiday so foot a bit sensitive
Took 2 Indocid after dinner
Sun(Day 5) :- Foot a bit achy
2 indocid after lunch , 2 indocid after dinner
Mon (Day 6) :- Stopping all Indocid
Wheezing has stopped , so I am assuming its the Allopurinol
So you are right side effects do not go away immediately , they linger in your body
Foot feels ok today.
Emergency plan for attacks
1. 6 x Indocid (2x Breakfast,2 x Lunch & 2x Dinner)
2. 2 x Colchicine tablets, then 1 every 3 hours until you go to the toilet
3. 3 day course of 1 tablet of predisnone
I understand that this is not a long term solution , but I see the rheumatologist on Thursday , then I can see if there is a medicine that will not give me the wheezing.
I asked the Dr whether there were any case studies where the crystals dissolved by themselves, but she said she had not heard of this before.
If I can control the gout attacks via my attack plan above and diet then I will try do this, as the wheezing from the Allopurinol felt very bad.
It’s just those attacks that can be bad, my first one was the worst , then 42 days later I got the second attack , but not so bad as I immediately took Indocid.
I don’t want to take Colchicine again, as I took it for 16 days when I started Allopurinol and it made me feel really bad, so will leave this medicine as a very last resort !!and then I will only take it for 1 day
Another side effect not sure if its related to the Allopurinol , black floaters started appearing in my right eye , that I did not notice before.
I have been monitoring this and maybe because I am aware of it now , I notice them come more frequently , not all the time though.
I am not too keen to re-introduce Allopurinol into my system, but let’s see what the rheumatologist says on Thursday.
I am taking it a day at a time
It’s very interesting my friend has taken Allopurinol for 30 years with no wheezing side effects, so I suppose everybody is uniquely different.
Just my bad luck I suppose.
I know I am just prolonging the inevitable as the crystals need something to break them down, but if the side effects are so bad then I will need to re-evaluate.
Thanks again Nobody for your wisdom !!
April 15, 2019 at 9:25 am #8965
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).
April 17, 2019 at 10:01 am #8967
Thanks for that , seeing the specialist tomorrow, so I have compiled a lot of questions for her, based on our conversation.
Good to be knowledgable in this area, at least I now know the correct questions to ask.
So just wondering what a low uric acid reading is?
I will also ask about the Indocid dosage during an attack an an alternative to the panadeine forte
Day 3 of no indocid and my foot is ok(Day 8 since I stopped Allopurinol) , but feeling tingly and has a bit of pain when i bend my toes up
Not sure if I should take some indocid now or let it ride !!
I will mention febuxostat and Uloric as well to the specialist lets see what she says.
Thanks again !!
April 18, 2019 at 2:08 am #8968
Just came back from the specialist, you are right 0.40 is still too high.
The MAGIC number is apparently 0.36 beyond this the crystals will form
So apparently if I diet like a month it will only bring it down by 0.05 !!!
So 0.40(current) – 0.36(Target) = 0.04
So theoretically maybe I can get it down with diet , although the specialist disagrees with me.
She said if I don’t take the medicine(Febuxostat now) then what will happen is the frequency of attacks will increase and the time between attacks will shorten , until I will have daily pain.
She did give me an attack plan for the attacks though
Colchicine 500mcg twice daily
Arcoxia 60mg daily
Until pain stops
My uncle takes Arcoxia when he has attacks and he says the pain relief is great, so this is another med I have not heard of.
So she will see me in 3 months time and then evaluate.
But it seems like I will have no choice but to try Febuxostat and see if I have any wheezing or other side effects !!
April 18, 2019 at 11:24 am #8969
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.
April 18, 2019 at 1:50 pm #8971
Ah , yes those were my thoughts exactly !!
I will give it my best these next 3 months with a very strict diet and daily exercise and see how I go.
Worst comes to worst I will have to accept and then start on the febuxostat.
I agree with you on the dosage of Arcoxia at the 60mg dose my uncle took the 120mg dose as he has bad gout on his knee.
I thought that Arcoxia was like taking Indocid and Panadeine together ?
A mixture of something for the pain and for the inflammation, I may be wrong.
I suppose it also depends on how severe your attacks are, my first one was can’t walk bad, my second was painful but could still walk,
My foot is a bit red today and when I tap it it is sensitive , but I am resisting taking the Indocid again , today is day 4 with no meds at all.
Not sure if thats a wise choice, but lets see how I feel tomorrow, going from taking indocid every day to once every 4 days is not bad.
I am going to try every trick in the book to beat this gout naturally, might as well put up a good fight before I concede !!
My gout daily plan will be
1. 2 celery tablets in the morning
2. 1 tablespoon apple cider vinegar mixed with water
3. 3 litres of water during the course of the day
4. A couple of glasses of cherry juice
5. Some eye medicine(2 tablets) with lutein and 150mg of Vitamin C
6. Gym twice a day ( Lunch & at night)
7. 2 celery tablets at night
8. No meat, chicken or fish
9. 1900 calories max a day
10. Lose 2.9Kg in 1 month
11. Experiment with Traditional Chinese medicine
12. Try folic acid?
13. Try tumeric?
14. 1 packet of Urol dissolved in water , once every 2 or 3 days
Lofty goals I know, but I have done the diet before and it worked, just without being vegetarian so that will be the challenge.
What are your thoughts for my daily plan 🙂
I am getting quite frustrated that there is no natural remedy for gout !!
Surely there must be a formula that people have used to reduce their uric acid that works for them ?
I understand that the medication works much quicker and is historically proven, but depending on the individual reaction to the side effects it may not be worth it.
Regarding the UA magic number of 0.36, that’s apparently the concentration of uric acid in your blood where it will dissolve in your blood , anything above that will start forming crystals, this is supposed to be scientifically proven.So quite cut and dry, therefore I suppose the goal of stabilising your blood to this number or lower, so no crystals will form.
I suppose to change your bodies functioning is quite difficult if you have been eating a meat diet for over 40 years !!
Your body I suppose gets used to producing a lot of uric acid in preparation to cater for all that purine.
So I guess that’s why it’s so difficult to change it by diet only , and medicine is needed to help.
Is it possible to get your UA down to zero? or is that a bad thing, too little UA can also be bad right.
What were the frequency of your gout attacks over the years ? and has it stabilised now and for how long ?
What were your allergic reactions to Allopurinol ?
Are you on Febuxostat now?
Any natural remedies that you are taking or have worked for you ?
Apologies for all the questions, but just interesting to know your experience.
April 18, 2019 at 5:11 pm #8972
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.
April 22, 2019 at 11:03 am #8974
H Nobody , apologies I responded to your answer last night but must of forgot to press the submit button !!
No worries, any information you give me is invaluable.
I understand what you are saying about natural remedies difficult to know what works or not.
Yes, I only plan to lose about 2.9 kg not a lot, and the exercise I will take it easy
My question is if I do take Febuxostat for 6 months to a year or until all the crystals are gone, can I stop ?
Or will my body be so used to it that I can’t.
Surely if all the crystals are dissolved, confirmation with a DECT scan then stopping the Febuxostat wont trigger any more attacks as the crystals are gone?
Once the crystals are gone, and I stop the Febuxostat then maybe I get 3 monthly UA tests to confirm my UA is not going back up again?
And if it’s not then problem resolved ? or is it not that simple.
Just very wary of taking long term meds since the wheezing episode with the Allopurinol and the chance of increased tinnitus which may impact my existing tinnitus(Still very minor, but don’t want to take the risk.
Also how long before the Allopurinol leaves my system , i only took it for a month and now its been 12 days that I am off it, but there is still some very light wheezing.
My toe joint a bit sore today I did a lot of walking so a bit red and sore to the touch aaargh.
It seems to me to get rid of these crystals will take at least a year with constant medication !! is this a correct statement?
Thanks again for all the info
April 22, 2019 at 4:19 pm #8977
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).
April 24, 2019 at 4:12 am #8978
It seems like you’re unclear on something: You get gout for one of two reasons, either your body produces too much uric acid or it can’t excrete enough. If you clear the crystals with meds and then stop taking them, your body is bound to re-accumulate more, and unfortunately you’ll most likely be right back to having attacks again. And you probably won’t know it because crystals accumulate over long periods of time before reaching a point where they cause attacks. To be honest, it doesn’t seem feasible to me that you’ll be able to get your blood tested often enough to track the UA spikes that cause crystal formation over months and years.
The meds will keep your body at a non-saturation point for the duration, so if you can find a med that works well for you without side effects, maybe you should try to get out of the mindset to stop taking them as soon as you’ve cleared your current accumulation. If your gout has become chronic, and it sounds like it has (I’ve never experienced anywhere near the prolonged symptoms you’re describing, especially after taking colchicine), you’re treating a lifelong condition now, not a temporary one. And I’m sorry you had trouble with the Allopurinol, I started recently and it’s working wonders for me with zero side effects.
April 30, 2019 at 9:05 am #8984
Yes I understand where you are coming from , at the moment I am just trying to eat more healthy and if I lose weight because of that then it’s good, but i agree slowly slowly.
How about the strategy of buying a home uric acid tester and testing every week, just to monitor if I am on the right track with my UA?
I just had a long chat with my friend who has had gout for over 30 years, he tried a year diet of just boiled chicken and fish ..aargh and it worked for him he managed to get his UA down to below 3.6 constantly
But then due to the strict diet he relented and now he is on 300mg Allopurinol now he eats anything within reason so I agree with you , it can be done by diet alone, just depends on your resolve and of course whether it is genetic or not.
His father and grandfather and aunt have had gout so it runs in the family.
My foot has calmed down now about 95%
I am trying some ointment named Kunzea Cream , it seems to give some relief
I also have some soup made with nearly ripe papaya and barley , which has really helped reduce the inflammation.
I don’t want to take the Indocid anymore as I believe it may have increased my existing tinnitus as it is ototoxic
I took it once when my inflammation was bad and the results this time were instant as I had stopped it for 8 days.
But now too scared to take it as my research has confirmed that this is true together with my personal experience
Yes let’s hope the crystals go quick
April 30, 2019 at 9:50 am #8985
My concern are the side effects of the medication , I am not unclear on the mechanism of how gout propagates.
My concern is that besides lifelong medicine there seems to be no alternate cure which really kills me as I have not ever had to take constant medication.
For some people there have been no side effects which means there is no impact on their quality of life, so they need not worry.
For me , wheezing means I can’t breathe from the Allopurinol and another potential side effect would be tinnitus which I already have and do not want it to progress or worsen.
These side effects could also exist in Febuxostat which I have yet to try and to be honest not to keen on trying it as it will be difficult to get off it as proved by my 1 month stint with Allopurinol.
So my choice bluntly is
Walking or breathing and maybe not hearing (Allopurinol)
Walking or possibly breathing and maybe not hearing (Febuxostat)
Quite a difficult decision to make
So it may have been an easy decision for you as no effect, but for me it has a bit more impact.
I dont think my gout is really chronic 1 bad attack , 42 days later a less severe attack because I stopped the Colchicine and reduced my dosage of Allopurinol and 2 months later I can walk but toe joint still a bit red.
In your case did you try diet and for how long and did it work? or did you go straight on the allopurinol?
May 6, 2019 at 7:31 am #8987Rick KalwayParticipant
I first had gout at age 45. I had it in the toe, followed by the ankle, then the knee.
i was given allopurinol and colchicine for medication at that time. I must be in the bad category and suffered from non stop diarrhea and stomach discomfort. Their only answer was for me to take Prilosec to ease my symptoms.
i instead chose to quit those meds and I quit drinking which I thought was a serious contributor. Over time all my symptoms went away and I was doing fine until this year. I had a toe attack which i was given Prednisone for and it worked amazingly well. But now a few weeks ago I got it in the ankle again and the Prednisone was not very effective and i am still having problems walking.
What are my options with allopurinol not being a good one?
May 6, 2019 at 10:41 pm #8989
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?
August 4, 2019 at 11:20 am #9035
I am back 🙂
I tried Febuxostat for 3 days side effects included.
1) Bad wheezing just after 3 days, Allopurinol wheezing after 30 days
2) Tinnitus got worse
3) Starting coughing blood
4) Reduced my immune system so much, yellow and green phloegm
Went to GP gave me penicillin (Amoxillin) for 7 days then it went away.
5) A few weeks later I think the Febuxostat activated something in my body
a) Lower base of thumb joint aches/sharp pain
b) Left Index finger , tender bump emerging
c) Some of my finger joints are tender when I brush against things
6) Initial toe joint that I had the initial attack for all good though
So now I have tried Allopurinol and Febuxostat to no avail.
I really dont want to try other URIC acid lowering medicine now , I am too scared, each time it screws up my system so bad and it takes so long to recover.
So yes my Uric acid is 0.51 supposed to be 0.36 , but now I am looking for a solution that will stop ua crystal formation and reduce the inflammation a little
So what to do you think about taking 500mcg Colchine (1 tablet) a day for one week and then dont take it for the next week
So 1 week on , 1 week off , 1 week on , 1 week off ?
I read that Colchicine will not reduce UA but may prevent or disrupt the formation of crystals and reduce inflammation.
I did take Colchicine together with Allopurinol for 16 days , but I did feel a bit unwell after that 16 days so I stopped the Colchicine.
But if I only take it for a week then stop for a week it should be ok.
Colchicine does not seem to have the same bad effects of Allopurinol and Febuxostat when you start and stop, it seems you can start/stop at anytime without impacting your gout? (Does not give you attacks)
So its been 6 months now without a disabling gout attack on my toe joint now, sure I had episodes when I was coming off the Allopurinol and the Febuxostat, but then I just hit that inflammation with six Indocid tablets and it killed it !!!
So now my worry is long term, diet only reduced my UA by 0.01 , but then again it was only for 3 months, if my body has been on a high purine diet for 45 years I cant expect my UA to lower in 3 months !!
So I am thinking laterally and will use Indocid to kill any attacks I may have, try to eat very well so I don’t trigger my existing crystals.
And take Colchicine as a preventative only , in 1 week off, 1 week on cycles.
I know my UA will still be high, but I want to stop experimenting with UA lowering meds for a bit as it kills my body.
Do you know anybody that is allergic to both Febuxostat and Allopurinol? and may be trying this?
I just want to confirm that it may be a stopgap approach , until I find a solution to lowering my UA to safe levels.
Any advice would be great 🙂
August 4, 2019 at 7:08 pm #9036
It sounds like you took way too much febuxostat. Besides the side effects, the main effect of a large initial dose (in a study, people who started with 10mg per days had fewer problems) would indeed be to give you weird joint pain/tenderness/redness as UA deposits are dislodged and move around.
Both allopurinol and febuxostat and xanthine oxidase inhibitors (XOI). Considering the side effects I can understand if you don’t want ever to take a XOI again. But it would be a mistake never to take a UA-lowering drug again. There are compounds which lower UA in common foods such as milk (the amount varies depending on the season, how the animals are fed and so forth) and you never got such reactions from foods, right?
Gout typically gets (much) worse over the years and 0.51 is high enough that there’s little chance to fix it without drugs so it would be reckless to avoid all UA-lowering drugs altogether. So the most obvious next step for you would be to get a UA excretion test in order to guess whether your kidneys could get rid of more UA without forming stones.
The 0.01 change in UA is just noise (you’ll need to get tested many more times) and your diet should obviously be improved further if you’re going to make do with a drug which only moderately reduces UA. This will take time.
Yes, colchicine will not give you attacks like UA-lowering drugs.
But in my opinion there is a risk of nursing a low-level attack for a long time if you don’t take enough to kill it off. I don’t know if there is a reason you should avoid large doses but most people can take a good bit more than 0.5mg per day for 1-3 days if need be.
The one week on colchicine, one week off plan doesn’t sound like a great idea. But it would be better than never taking it or taking it all the time.
How about choosing whether to take it or not depending on your symptoms rather than a predetermined schedule? Unfortunately symptoms react pretty slowly to colchicine so this ain’t easy. But you’d learn what usually works and what usually doesn’t with practice.
If you tolerate indomethacin well and as long as your attacks are infrequent, you could just use that and not bother with colchicine.
August 5, 2019 at 7:17 am #9037
Thanks for the quick reply.
I took 40mg a day of Febuxostat one a day for 3 days (1/2 a 80mg tablet) only
So currently I don’t get any attacks, some days my toe is just a bit stiff and there are fantastic sensations going on (Hard to explain)
I do feel tenderness in my finger joints when I press them , not sure if thats because the previous stop/start of Febuxostat and Allopurinol triggered something or my gout is progressing
So I have not had this tenderness issue ever before.
So I am more worried long term about crystal formation.
But as you say , no substitute for UA lowering meds.
Indocid does not stop the formation of crystals in my understanding, just kills the inflammation , so I would only take that for attacks.
I was proposing the week on/off approach because then it would interrupt the crystal formation process as a stop gap approach until I am brave enough to start yet another UA lowering med.
But what you are saying is when I feel symptoms, tenderness in fingers, wrist joint, heel etc , then I take Colchicine for a while?
I know I am just stalling the process , but the side effects of both Allopurinol and Febuxsotat are a bit horrific for me.
So I want my body to really calm down and get back to normal before attempting any other UA lowering medication
i am not sure how long it may take , maybe never for my body to stop overproducing or underexcreting UA , now that I am on a virtually meat free diet, that is the issue and of course how long it will take before I get some serious issues i.e Kidney stones/tophi etc
August 5, 2019 at 12:27 pm #9038
Yes, right now I would say staying on colchicine makes sense because of your symptoms. Obviously if these symptoms persist an extraordinarily long time you will have to change strategy. You may develop a better sense of what symptoms warrant colchicine over time but I think that right now is a good time to be cautious.
Indometacin would be an alternative if you tolerate it better than colchicine (I tolerate colchicine better but we’re all different).
I doubt colchicine would do much more than indometacin to prevent crystals from forming. The main difference I think is that a given dose of colchicine remains in the body longer and that taking a small amount every day is generally less dangerous than to take delayed-release indometacin every day. So it makes sense to use colchicine as a preventative. But taking a lot of colchicine (that is, more than you take) every day isn’t recommended and even a small amount could end up causing serious side effects over time. The problem is basically that if your body can live with the amount of colchicine you’re taking, it can also contribute to crystal formation.
Taking “only” 40mg was irresponsible. That was quite a strong dose and not a reasonable initial dose for somebody who has already had trouble with side effects. Hopefully you learned the right lesson, which is to exercise due diligence with drugs and not to ignore reasonable warnings. The right lesson was certainly not to avoid all drugs which lower UA regardless of how they work.
And being afraid of drugs is obviously no reason to avoid getting preliminary tests which would if nothing else give you clues about improving your diet. You could of course improve your diet without getting tests but why do it blind?
Finding a good doctor willing to support you may take you quite some time to begin with so you might as well start now. The day you develop serious problem will be too late. It may be different in your your country but patients with special problems often find it difficult to secure the support of a doctor willing to pursue all the options recommended by the medical guidelines (nevermind non-conventional options) and not just the most common therapies.
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