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Keith Taylor (GoutPal Admin)Participant
Interesting list, and I cannot add much to it.
However, though gout manifests itself, amongst other things, in bone-eroding uric acid deposits, it is really a metabolic disorder.
The metabolic reasons for producing too much uric acid are unclear, but they are becoming more understood with each passing year. Genetics is a very complex subject – way beyond me – but several different genes have been associated with uric acid processing in the kidneys.
The fact that this can be exacerbated by poor diet is often overplayed, but something we should all be aware of, though not fixated by.
Perhaps the genetic disorders that influence excess uric acid are linked to other conditions. It is usually very difficult to separate nature from nurture, so assessing whether we were born to have gout, or brought it on ourselves is often difficult.
In my view, the only positive thing we can do is insist on good uric acid control and respect ourselves through better diet if this is an issue. We cannot, at least yet, change our genetic makeup.
Sorry this is not much help in answering your question. Perhaps others with several health conditions can chip in.
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Yes, I'm seeing a familiar pattern
Keith Taylor (GoutPal Admin)ParticipantAny bad diet has the potential to cause the metabolic problems described above. Fasting, in particular, is well documented. Excess fructose may well promote cellular death, but no more than any other nutritional imbalance. It is a good reason to promote healthy eating, it is not an excuse to sell overpriced pseudo-scientific reports.
Keith Taylor (GoutPal Admin)Participantltjuggernaut said:
Thank you Keith. I dont consider my doctor a fool but Im really glad she sent a referal for me to see a Joint Specialist. Sorry I didnt mention that; my apology. Its just sucks cause im have an gout attack right now.
Maybe I was hasty describing her as a fool, but I find it very difficult to understand why anyone has the power to prescribe a drug, then prescribes it incorrectly. I am only a layman, but I take this very? seriously.
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If one underprescribes pain relief, the only consequence is that the patient suffers more pain than they need to. This does not apply to some drugs. Antibiotics are the most well known, where underprescription (or patients not conforming) causes bugs to become resistant is worst, as it affects everybody.
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Aside
What does she prescribe for a headache? One quarter of an aspirin pill?
Underprescription of allopurinol only affects the gout patient, but it does it in a serious way. There is only one action required of allopurinol, and that is to lower uric acid to the safe level of 5mg/dL (0.30mmol/L). There is no value in taking allopurinol if it does not achieve that, and no point in introducing arbitrary limits below 900mg. The consequences of the foolishness of underprescription, with mg/dL achieved on the left) are:
- 5-6
- Warning! Still at risk from new crystals forming if natural fluctuations in temperature and uric acid levels exceed saturation point.
- 6-7
- Danger! This is the place nobody wants to be. Daily variations result in constant pain from old crystals dissolving, and new crystals forming.
- over 7
- Nothing achieved except may slight reduction in the rate at which new uric acid crystals form. Waste of time, effort, and money
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Surely, she gets paid enough to warrant better. This is not difficult, just a bit of very basic science that is in the public domain.
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Having said which, I got some pretty stupid advice from one of the overpaid part-timers at my doctors, so I misheard him, and doubled the dose. Very useful at times, this dodgy hearing (as in “Do you want to go to sleep or what?” – “What?”)
Keith Taylor (GoutPal Admin)ParticipantYour doctor is a dangerous fool. The dosing instructions for allopurinol are quite clear unless you have kidney problems.
Allopurinol should be started at 100mg then incremented in 100mg stages until uric acid stabilizes at, or below 5mg/dL (0.30mmol/L), with a maximum dose of 900mg per day. Aiming for a lower target for 6 months or more will increase the rate at which old uric acid crystals dissolve.
The risk of soreness, redness and pain continues for 6 to 18 months (possibly longer) after you have reached the 5mg/dL target. If you do not reach that target, the problem will persist, and get worse, until your joints are damaged permanently.
Your doctor is not at risk of being crippled – you are. Take all possible steps, including legal action if necessary, to get the treatment you deserve.
Keith Taylor (GoutPal Admin)ParticipantYou aint seen nothin yet, limpy
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Just wait til they realize that, within the bounds of statistical significance, the global human average number of breasts = average number of testicles = 1
Keith Taylor (GoutPal Admin)ParticipantYes, I really hate those reference ranges. At normal body temperature, uric acid crystallizes around 0.4mmol/L. With lower temperature common in the extremities, it is no wonder Normal Uric Acid Level + Normal Room Temperature = Gouty Big Toe.
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I prefer it when doctors use medical science rather than statistics to guide their diagnosis and treatment. I also wonder how many more health conditions are totally mismanaged due to this obsession with making people average.
Keith Taylor (GoutPal Admin)ParticipantHi Guy, and welcome.
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I have put a uric acid calculator on the main website. If you ever forget where it is, just type calc in the search box at the top of the page, and use the first result. To save you looking for now, it is 7.4 mg/dL.
The most important fact you have to remember at all times is that once you have had a gout attack, 0.30mmol/L is your top limit. Do not listen to anyone telling you you are normal, or some other meaningless label. The lab results that return reference ranges are simply reporting statistical norms, and they do NOT apply once you have had a gout attack.
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The medical upper limit was around 0.35mmol/L for a long time, but British rheumatologists have set the safe limit at 0.3mmol/L. This allows a good margin of safety to cover natural fluctuations in uric acid levels and to cover lower temperatures which lower the crystallization point of uric acid.
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Also on the main site, details of uric acid level tests at home. Those units can be easily set to either mg/dL or mmol/L.
Keith Taylor (GoutPal Admin)ParticipantI do hope that everyone who has read this far understands the issues here.
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Over-use of fructose in food manufacturing, from the peer-reviewed scientific research that I have read, is likely to cause health problems. One or two over-zealous investigators have hinted at gout implications, but nobody has done a proper study that compares uric acid levels at different fructose intake levels. zip2play has explained why the single study quoted is meaningless in this context. Statistical studies are excellent ways to find likely areas of study for cause-effect relationships, but they do not confirm or deny those relationships – they only flag areas for more research.
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In the murky world of Internet Marketing, people seize upon these quirks of science, and manipulate the unwary by supplying the shoddy reports and snake oil that I have mentioned previously. Nothing new in that regard, except that the Internet has allowed these people to band together and create a network of misleading websites that act with the sole purpose of making money. They will make outrageous educational claims, and deliberately cause confusion so that they can claim that they have the only secret answers. They will never point to authoritative sources, as those sources simply do not exist. That is why tonyccc keeps urging us to use Google and YouTube for our research, as these resources are easy to manipulate.
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I'll pause here for a tip (or two). Google has some useful tools, but the general search includes a lot of spam. Obvious spam gets caught and filtered out, but the type of networked spam I have referred to is difficult to trap. It is much better to look to the top of the Google screen, got to the More section and select Scholar. Most of the resources are reliable, but still be wary – anyone can write a book, and not all the sources are peer-reviewed. The second tip is – YouTube is an entertainment channel, but spammers see it as a fair target to try and add credence to the snake oil pitch. I will not be seeking or watching the aforementioned video.
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Lest you be fooled by the “I'm not selling” lie, just because there is no direct link to a product or service. That is not the point. The snake-oil pushers are just engaging in a little brand awareness. In other circles, it is called grooming.
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I leave the tonyccc posts here as a warning. Please feel free to read them, but please ignore every single word he has said. Free speech is good, but distracting.
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I hope we can get back to the real discussion, which is fructose and uric acid. As odo has pointed out, Fructose is an issue that should be discussed, and discussed with precise and relevant facts. There may be new research, or reports I have missed.
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To be clear where I stand, there is sufficient evidence to flag fructose as a risk, but you have to take control of your own gout management. Uric acid levels are the only thing that matter. Once you have that number, and an agreement with your doctor for repeat tests as you need them, you can see if changing your diet is improving your gout. You cannot rely on pain or the absence of it. If you have ever had a gout attack, you must get uric acid to 5mg/dL (0.30mmol/L). If dropping fructose does that, then you and your doctor will be happy. And I'll be happy to here from you – with the numbers.
Keith Taylor (GoutPal Admin)ParticipantWhen I calmed down from the bad experience that prompted my rant above, I wondered what it was about this topic that got to me.
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Something didn't ring quite true. I've spent nearly 6 years doing this gout support thing, and ten years before that trying to work my way through all the BS on the Internet. I've learned to find the good stuff, and ignore the bad, but there are so many vested interests these days, I can still be caught out.
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As an aside, I recently restarted my efforts to promote gout support through Facebook. When I first looked at it, there wasn't much available, but now, the world of gout is dominated by self-interest. One major pharmaceutical company has invested millions in a marketing campaign through a third party (it might be a group of companies as the trails are muddied, and I cannot really be bothered wasting rime investigating shysters). They might call it Gout Study, but it aint going to help gouties much. There'll be a few crumbs to keep people interested, but the study is really how to prey on fears about allopurinol and other aspects of gout so you can push some expensive drugs. Below the exploitative pharmas, we have a range of so called entrepreneurs who push pseudo-scientific reports at exhorbitant prices, or so-called herbal cures that they've prepared in their garage.
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Here lies one of the second group.
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Copy the first three sentences of this topic into Google, and you get 114,000 results most of which link to gout forums such as this, or spammy sales sites that push a rubbish report at $49.97 (?40.68). There's bound to be more rubbish – that's what jumping on the fructose-bashing bandwagon without looking does for you. What hurts me is that respectable, caring people have responded in good faith to this rubbish that has been posted to any forum in the world that was good enough to try and help.
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Seasoned gout forum contributors will remember many similar attempts to rip-off our well-meaning members here and elsewhere. Often you can spot them by the stupid usernames they choose, but tonyccc is so confident in his ability to rip people off, he's stopped inventing new names.
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Back to Google again, this time to search for tonyccc, and you find more rubbish, including lots of second hand car stuff. Along the way I discovered Donis Fylaktou who might be a pseudonym, his real name, or an associate. Who cares!
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Hours of time spent polluting our Internet with self-serving rubbish.
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Now, if this was the only way to earn a living, it might be understandable, but it is not. I have repeatedly offered to work with gout support suppliers to help promote good quality products and services openly and honestly. Trust me, it is a great way to make a living.
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One last chance, tonyccc. Tell me if you have anything good to offer, and while you spend time removing your shit from the Internet, I'll come up with an honest and open and non-exploiting way for you to earn a living.
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Do you have anything good to offer?
Keith Taylor (GoutPal Admin)ParticipantThis thread is going to be deleted very soon as it is totally misleading.
I cannot allow novice gout sufferers who might be contemplating, or even trying to understand allopurinol, to be misled in this way.
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Gout has one cause – excess uric acid. Allopurinol has one purpose? – lower uric acid (though scientists are looking at other benefits).
Now it may be true that cutting out fructose lowers uric acid, but that is not the point.
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Talking about avoiding fructose to lower uric acid, or talking about allopurinol to lower uric acid is utterly pointless without some uric acid numbers.
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Not only is it pointless, it is misleading. I will leave this a few days to see if someone wants to give some reliable information. I can accept people's own uric acid measurements, though I would rather see some double-blind randomized control data.
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There is plenty of information in the Gout Treatment section about allopurinol. Just search for allopurinol uric acid in the box above. There is little information about fructose, because so far, all the evidence I have seen is compromised by bad science and/or vested interests.
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One week maximum to say something sensible about fructose, or I will set it as a banned word.
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[sorry about the rant, you got me on a bad day]
Keith Taylor (GoutPal Admin)ParticipantWelcome Bobby,
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I hope you will post more here, but please do not be offended by anything Hans says. He is our wonderful, wise, elder who we all love and respect.
Now wait for the fun as I get shouted down by members who do not want to be included in the 'all'
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We accept all forms of humor/humour here, in the safe and secure knowledge that it is harder to feel pain when you are fuming at a misunderstanding. Writing that has made me realize why Hans does it – it's so we all forget our gout pain when we direct our fury towards him!
Hans my hero, taking it for the team.
December 8, 2011 at 8:41 am in reply to: Gout, Doctors, and 20 things you should never use a spatchula for. The cronicals of a new gouty #12445Keith Taylor (GoutPal Admin)ParticipantWelcome John, great first post
Jmutt said:
?completely full of crap, and will go an extra length to talk nonsensical, illogcial, and sometimes even a complete blithering nonsense, for up to 4hrs straight, and never less than 25 minutes. All making for a complete non-productive work day.
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This is also true and compulsory for website forum owners. It is optional for sailors, but perhaps more common than we think.
Keith Taylor (GoutPal Admin)ParticipantYeah, keep on keepin' on.
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The length of time to dissolve urate deposits is variable. But, they will go if you keep that uric acid level low.
Keith Taylor (GoutPal Admin)ParticipantAs this forum is being replaced with new software, please search for instructions for sharing gout pictures. Please note that the free service for sharing large images or sharing lots of gout pictures is unaffected.
Keith Taylor (GoutPal Admin)ParticipantWith the help and support of my gouty friends here, a new chapter is opening.
I can truly see that GoutPal Is On The Mend, in more ways than one.
So it is time for this discussion to close.
Thank you all.
Keith Taylor (GoutPal Admin)ParticipantMy dear friend zip2play,
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I'm trying to stay away from this old style forum, as I work to make the new faster, MSIE compatible versions better, and more accessible, but I cannot let this one go by.
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You have given so much to these forums over the years, that I have to respond. You are one of the few gout patients who takes true responsibility for treating your gout, and you have spent considerable time researching best methods, and sharing your findings.
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As a relative newcomer, I have been impressed by the recent recommendations to pitch 5mg/dL as the safe limit. We know that 6.8 is the crystallization point at normal blood tempartature. But we also know that lower temperature in the extremeties lowers the crystallization point. We also know there are daily fluctuations in uric acid levels, and there are treatment fluctuations, as lowering blood uric acid causes old crystals to dissolve and temporarily increases levels.
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In a nutshell, we need a good safety margin to be sure that new crystals do not form. 5mg/dL (0.30mmol/L) gives us that safety level. My gold standard is 5, and I strongly recommend that all gout sufferers adopt this. There may be individual circumstance where compromise has to be made, e.g. for kidney problems, but they should be the exception rather than the rule.
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So the question remains ? allopurinol increase, or allopurinol plus probenecid. Logic dictates that, if uric acid clearance is an issue, then probenecid is the answer. And the proof is with a 24 hour urine test. Though the values will be affected by allopurinol, I can see no reason why the test should not be valid. Do the test, and then add probenecid to your regime for 4 weeks before a second test. If clearance rate has increased, then probenecid is helping. But the true goal remains at 5mg/dL, so even adding probenecid might mean extra allopurinol. The numbers will dictate the plan, and I wish you the best of luck with getting the right plan that suits you.
Keith Taylor (GoutPal Admin)ParticipantJust to kill a little time until I go to the pub, I looked into colchicine a little further. The important factors are how long it takes to become effective after you take t, and how long it lasts. There are several studies, and they all seem to suggest that effects vary between individuals.
It might take half to one & half hours to reach maximum effectiveness, and it might last 5 to 12 hours. This means to me, that it is going to take a while to find out what works best for you. Logically, Hans' approach is right, and it follows what I do, more or less. Low dose colchicine backed up by NSAID (in my case ibuprofen). Colchicine always at first twinge. NSAID depends on what I'm doing. If going out, I usually take it immediately. If staying in, I often wait.
When I first started allopurinol, and when I increased dose, I took colchicine for about a week as a preventative, and it was very effective.
Mostly, I'm looking forward to the time when the uric acid deposits have melted and I can forget all about this pain relieving stuff.
November 11, 2011 at 1:25 am in reply to: The absolute best, yet the absolute worst. Please help! #12323Keith Taylor (GoutPal Admin)Participanthansinnm said:
I am not trying to punish anyone. I do care, that's why I am responding.
I know you do Hans. Out of all the crap in this thread (much of it from me), your 2nd post of Nov 4th is the only one with any practical advice. There's no smiley for applause, so imagine :clap:
Keith Taylor (GoutPal Admin)ParticipantCuriouser said:
Urate crystals in the skin are a known symptom – see commons.wikimedia.org/wiki/File:Uric_acid_skin_rash.jpg for what I'm told is an example.?
Anyone getting health advice (or any other advice) from Wrongipedia is asking for trouble.
November 10, 2011 at 7:22 pm in reply to: The absolute best, yet the absolute worst. Please help! #12318Keith Taylor (GoutPal Admin)ParticipantI can see your point odo, but this topic doesn't really address people like yourself who take responsibility for their own lives.
Whereas you might see a problem with your health, look for relevant information, sift out the rubbish, and ask pertinent questions, others take a completely different approach.
They assume that people who contribute here, especially myself, are going to give them a recipe for a gout-free life without any effort on their part.
Personally, I like Fry. I like his humour (definitely with a u), and I like much of what he says. Occasionally he goes over the top and occasionally he is just plain wrong. However, I believe his ubiquity is as much to do with his talents as it is to do with his drive to cash in on his celebrity status. Fortunately, unless you are physically in his company, he comes with an off button.
The most pertinent point of this video was telling the whiners and whingers to shut up. I'd just like to tell them to stop posting here, but I would much rather they turn the whinging into constructive criticism so we can all make our gout resources better.
Keith Taylor (GoutPal Admin)Participant@zip2play:Nicely put.
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ctrlkeys said:
initial blood results on the day I started allopurinol and they were .39 so 6.6 or 393, I have learnt to convert on the fly now?
For those with less mathematical prowess, type calc (short for calculator) in the search box above where you will find a link to uric acid calculator
Keith Taylor (GoutPal Admin)ParticipantThis format of the gout forum is closing.?
Please continue the debate about gout attacks during treatment for lowering uric acid in the Lowering Uric Acid Gout Forum,
where I hope you will learn to understand that, whilst not compulsory,
gout flares are a common sign that you are finally clearing out old
deposits.Limpy is right – you must do something about the uric acid deposits. These can build up slowly without flares, but they are slowly
destroying bones, ligaments, tendons, and cartilage. Without this short
term pain, you risk permanent joint damage.My article that the new forum is built around, How Does Lowering Uric Acid Cause More Gout Attacks?, gives some tips on coping with these temporary flares brought on my lowering uric acid.
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If that page does not help you, or if you still have related issues, then please use the new format gout forum.
Keith Taylor (GoutPal Admin)ParticipantI can be strolling through Regents Park about 1pm Tuesday 22nd November, but almost any date is good for me. I'll email you so watching squirrels don't hear of our arrangements.
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Beware of BAFE syndrome. Blame Allopurinol For Everything is not serious, but quite prevalent. It probably has a medical name but happens because we automatically try to link important or unusual events in our lives. Side effects should not be ignored, but if it isn't serious, do not put too much emphasis on it yet. My advice – keep your eye on it (geddit)
Keith Taylor (GoutPal Admin)Participantspartanu said:
?I am kind of worried about this drugs because I have been reading here : NSAIDs for gout?that it is possible to have side effects by using them.
You are right to be worried. You are looking in totally the wrong place for gout advice. What the gout doesn't harm, the bad advice will.
Use the search box in the bar at the top of the screen. Read the forum guidelines. Ignore the fact that I'm crabby today, and come back with some decent questions.
November 9, 2011 at 9:12 pm in reply to: The absolute best, yet the absolute worst. Please help! #12299Keith Taylor (GoutPal Admin)ParticipantSomebody said it better.
It isn't here because it's British – it was given to me by an American friend with soul. It isn't here because it addresses all the points raised.
It's here because it shines a light on the issues raised here, and adds many new dimensions.
Keith Taylor (GoutPal Admin)Participantctrlkeys said:
Hey Keith?
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thank you again, have just popped my first allopurinol 300mg pill and breathed a sigh of relief, will keep a diary and document my progress, side effects, levels and such.?
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if you are ever in London let me know would love to meet you for a coffee or something I live very central (regents park) and yesss Squirrels watch out, so many in London cant wait to break of the steak knife and fork lol
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imi
The diary sounds like a good idea, and caused a click in my brain. I have had ideas for some time about encouraging other gout sufferers to start their own website. When I started GoutPal.com, it was as much about documenting my own findings and progress as anything else. I found that by doing this publicly, it pushed me into researching and reporting in more detail than I might have done privately. I doubt I would have had the optimism about fixing my gout that I have now, and I certainly would have fewer high-quality friends.
If it is something that might interest you, it would be nice to discuss it near Regents Park. If yes, we can arrange something when you have some free time, otherwise I'll email you whenever I'm likely to be in London.
Keith Taylor (GoutPal Admin)ParticipantThis format of the gout forum is closing.
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Please continue the debate about gout attacks during treatment for lowering uric acid in the Lowering Uric Acid Gout Forum, where I hope you will learn to understand that, whilst not compulsory, gout flares are a common sign that you are finally clearing out old deposits.
I know it is hard at first, but I hope you can be comforted to some extent with the knowledge that you are doing something about the old deposits. These can build up slowly without flares, but they are slowly destroying bones, ligaments, tendons, and cartilage. Without this short term pain, you risk permanent joint damage.
My article that the new forum is built around, How Does Lowering Uric Acid Cause More Gout Attacks?, gives some tips on coping with these temporary flares brought on my lowering uric acid.
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If that page does not help you, or if you still have related issues, then please use the new format gout forum.
Keith Taylor (GoutPal Admin)ParticipantWow thank you imi
That isn't a rant, it is very good thoughts.
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By the way, I forgot to mention that allopurinol takes up to 2 weeks to reach maximum benefit, so if you are arranging progress tests, you need to wait 2 weeks after a dosage change to get reliable results. My doctor always uses a 4 week gap between retests, and it sounds like you will have similar good service.
Watch out squirrels – we're celebrating.
Keith Taylor (GoutPal Admin)ParticipantI just spotted your profile picture. 2) should now read:
Personally, I'd celebrate moving forward with a nice squirrel curry.
Keith Taylor (GoutPal Admin)Participant1) Use the 300mg immediately. Save the 100mg, in case you need to increment to 400, or drop to 200 in future – I used mine 3 at a time when I was late picking up a repeat 300mg prescription. The normal range is without meaning (and potentially dangerous) to anyone who has experienced one acute gout attack. You must get uric acid to 0.30mmol/L (5mg/dL). This should be easier in England, as it is a clear and precise recommendation by the British Rheumatologist Society. You may need to remind your doctor of this, and explain that the normal range is a statistical average that might help diagnosis ? it is completely irrelevant once gout is confirmed ? like telling an alcoholic that 2 drinks a day is normal. (I'll be using that comparison again ? thank you for the inspiration)
2) Sensibly, you should wait until you break the 0.30mmol/L barrier. However, allopurinol is very effective at reducing uric acid from diet, about 50% effective on uric acid from our natural cell turnover, and completely ineffective on uric acid from dissolving crystals. Personally, I'd celebrate moving forward with a nice rack of lamb, but I do not necessarily recommend that to anyone without my cavalier attitude.
3) Both. Colchicine stops or slows inflammation getting worse, but you have to wait for existing inflammation to subside naturally. That is why it is so important to take it at the first signs of a twinge. Prophylactically, it worked fine for me during the two weeks recommended by my doctor after each dose increase. My personal preference is for pain relief as required after that period. As I reported in the new lowering uric acid forum earlier, I can combine colchicine with NSAID for very quick relief when encouraged by a party. I use ibuprofen, but I believe naproxen is even better
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