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Keith Taylor (GoutPal Admin)Participant
Welcome Bob, and thanks for sharing your experiences about vitamin C as a natural gout cure.
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I'm aware that there is a growing acceptance of vitamin C as a mainstream gout treatment, though dose will probably remain an issue for case-by-case investigation. What I'm not clear about is if the benefit is short term pain releif, or long term uric acid control.
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As I've tried to explain in my introduction to natural gout cures that lower uric acid, choosing an alternative to pharmaceuticals does not mean that you should forget the basic principles of gout management. By all means, manage pain, but even if you do not visit your doctor for prescription medicines, you should still visit regularly for uric acid tests. Once a year will be enough if your uric acid level remains below 6mg/dL, and as a wise gout sufferer has pointed out, it is best to play safe, and get liver and kidney function tests at the same time.
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Due to the way gout works, it is perfectly possible for urate deposits to grow unnoticed for several months, and even years. If your uric acid level is above 6mg/dL, these deposits are slowly destroying body tissues. Left unchecked, you have certain future gout attacks, and permanent joint damage.
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I'm not saying that vitamin C can't work for you – I just want you to be certain that your future health is safe.
Keith Taylor (GoutPal Admin)Participantcasman said:
… So hopefully not asking stupid questions in the interm.
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The only stupid questions are the ones we don't ask.
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As zip2play has said, allopurinol allows an unrestricted diet, though sensible eating with what is generally considered to be a healthy diet is best. Uric acid is generated by our own meat (as cells die through normal metabolism), as well as from purines in the food we eat. Allopurinol eliminates all uric acid from food (exogenous), and about half the uric acid our own bodies produce (endogenous).
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For anyone else looking for dietary controls to avoid medication, not only do you need to be aware of the self-generated uric acid, you also need to be aware that excess iron and calories have as much (if not more) to do with gout than purines.
Keith Taylor (GoutPal Admin)ParticipantAs noted above, these instructions are a little outdated, as the upload feature in this forum has changed. I plan to update the instructions this week.
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For more gout pictures, see the Gout Picture Library, especially towards the end of that page where there is a new page about sharing photographs and other files using the Dropbox service.
There are significant advantages with using that file sharing service, as it includes generous free filespace and tools to automatically backup all your important files (requires good Internet connection).
Keith Taylor (GoutPal Admin)Participant- Abstract
Eur Cytokine Netw. 2001 Apr-Jun;12(2):290-6.
The
effect of Sambucol, a black elderberry-based, natural product, on the
production of human cytokines: I. Inflammatory cytokines.Barak V, Halperin T, Kalickman I.
Immunology Laboratory for Tumor Diagnosis, Department of Oncology, Hadassah University Hospital, Jerusalem, Israel.
Abstract
Sambucus
nigra L. products – Sambucol – are based on a standardized black
elderberry extract. They are natural remedies with antiviral properties,
especially against different strains of influenza virus. Sambucol was
shown to be effective in vitro against 10 strains of influenza virus. In
a double-blind, placebo-controlled, randomized study, Sambucol reduced
the duration of flu symptoms to 3-4 days. Convalescent phase serum
showed a higher antibody level to influenza virus in the Sambucol group,
than in the control group. The present study aimed to assess the effect
of Sambucol products on the healthy immune system – namely, its effect
on cytokine production. The production of inflammatory cytokines was
tested using blood – derived monocytes from 12 healthy human donors.
Adherent monocytes were separated from PBL and incubated with different
Sambucol preparations i.e., Sambucol Elderberry Extract, Sambucol Black
Elderberry Syrup, Sambucol Immune System and Sambucol for Kids.
Production of inflammatory cytokines (IL-1 beta, TNF-alpha, IL-6, IL-8)
was significantly increased, mostly by the Sambucol Black Elderberry
Extract (2-45 fold), as compared to LPS, a known monocyte activator
(3.6-10.7 fold). The most striking increase was noted in TNF-alpha
production (44.9 fold). We conclude from this study that, in addition to
its antiviral properties, Sambucol Elderberry Extract and its
formulations activate the healthy immune system by increasing
inflammatory cytokine production. Sambucol might therefore be beneficial
to the immune system activation and in the inflammatory process in
healthy individuals or in patients with various diseases. Sambucol could
also have an immunoprotective or immunostimulatory effect when
administered to cancer or AIDS patients, in conjunction with
chemotherapeutic or other treatments. In view of the increasing
popularity of botanical supplements, such studies and investigations in
vitro, in vivo and in clinical trials need to be developed.PMID: 11399518
Keith Taylor (GoutPal Admin)ParticipantDan said:
?Even allopurinal can cause damage to your kidneys or liver. Maybe in a small percentage but if your in that percentage it is a big deal. Until modern medician come up with better meds we have to look. If you are the one who can no longer take meds for uric acid you better hope someone somewhere comes up with something.
We've been here before. I believe there is more evidence to suggest that allopurinol is good for kidneys than bad. In fact, I cannot recall any evidence that suggests allopurinol is bad for kidneys, so I can't refute it. I can certainly see plenty of evidence that shows high uric acid can damage kidneys. Use the search box above, and enter kidney to see the positive benefits, and other discussions. Liver problems might occur, but this is a very complex subject. As Hans has said recently, it is important for gout patients to have frequent liver and kidney function tests alongside their uric acid tests. I can't find any evidence that long term use of allopurinol is damaging to either kidneys or liver, but I'd certainly appreciate some links or study titles so I can investigate further.
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What concerns me most about your regime Dan, is the confusion between allopurinol, a treatment for lowering uric acid, and elderberry, a treatment for reducing inflammation and pain.
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Of course, you have the right to choose whatever gout treatments you want, but if you are concerned about allopurinol usage, your options should be to focus on alternative treatments that lower uric acid, though these are even less well monitored, from a side-effect point of view, than allopurinol, or other Gout Medications To Avoid Gout .
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I really do take your point about the amount of side-effect information compared to usage information, bit surely this is just a product of applying controls. Not that FDA controls are perfect, but at leat there are some. Elderberry juice vendors are not obliged to exercise the same levels of controls or disclose side-effects, but search for “elderberry poisoning” will tell a different story.
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I can tell by the tone of your previous reply that you are not best pleased with some of the crticism. Believe me when I say that it is entirely motivated by concern for your health. I would like to be supportive of anyone finding acceptable alternatives to pharmaceutical monopolies and cartels, however, the same principles of gout treatment apply whichever treatment options you choose (including diet). By all means take whatever steps necessary to deal with the pain in the short term, but do not neglect the vital uric acid controls that ensure gout freedom in the long term.
Keith Taylor (GoutPal Admin)ParticipantThat's excellent advice, Hans, and I'll make sure it is given more prominence in future.
How frequent is best for liver and kidney function tests, after the initial test before urate lowering therapy? Once a year as part of annual check-up, or more frequent?
Keith Taylor (GoutPal Admin)ParticipantI'm a bit concerned about describing this as “authoritative.”
Your health authority should be your doctor, though we have good claim to authority on how to deal with your doctor. Ultimately, your health is the responsibility of a partnership between you and your doctor. I hope this forum, but especially my main gout site, help you develop that relationship.
And if anything you have read on either site has lead to your decision to stop allopurinol, then you must tell me where it is so I can delete it immediately. I'm particularly worried, as you are the second returning visitor this week to have dropped allopurinol without reference to uric acid levels. Have I really failed you all that badly??
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As I've said in?Is Allopurinol A Lifetime Drug? and several other places, you MIGHT be able to stop taking allopurinol, but you can NEVER (as in NEVER, EVER) stop annual uric acid tests. Any lifestyle or meds dose changes MUST be accompanied by more frequent test ? say once per month, relaxing back to once per year as levels stabilize. You mention that your uric acid levels stay low for days, but this is to be expected ? the effects of allopurinol do last for days. This is why you rarely get a problem if you forget to take it for one day, and why you should leave two weeks between a dosage change, and the uric acid test you and your doctor use to assess the effects of that change.
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As you've learned the painful way, failure to control uric acid puts you back where you started. So the answer to your first 2 questions is “it depends.” Not particularly helpful, but nobody can predict the rate at which gout flares will stop when lowering uric acid. What one can say with some degree of confidence, is that they will eventually go if you get uric acid levels below 6mg/dl, and the lower you get it (i.e. aim for 3mg/dL), the quicker it will get rid of old crystals. 300mg is irrelevant ? allopurinol maximum dose is 800mg per day ? your dose should be set to achieve your target uric acid level. Your target uric acid level is the level that you and your doctor agree is the best target taking into account your medical history.
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Your third question is bordering on crossing the line of what is correct on an online amateur forum. How on earth can you expect other people to take responsibility for the state of your kidneys!!
If you are worried about this, you must get to the doctor or emergency room immediately. For what it's worth, I'd imagine that you've reached the common point of many gout patients who do not manage uric acid levels properly. That common point is a level that fluctuates around 6 to 8, so crystals are constantly forming and dissolving. Remember, gout flares can occur during both these phases, so the more unstable your uric acid level is, the more likely you are to have a gout flare. Also, the immune reaction that gives gout it's unique agony can vary, so you might just be more sensitive at the moment. The stress of excess mountain biking or high protein / alcohol might be a factor, but only a proper medical examination can tell you what you need to know.
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Sorry if some of that sounds a bit harsh, but as you said “dumb move” ? I'm just trying to shock you into “smart move” mode.
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As for FB, if that's the Fb linked in the bottom left of each page, you'll soon see that I don't have too much time to spend there, though I do quite like it. I would be very interested in ideas/help for getting it going, but I'm struggling to see what can be done there that couldn't be done here. Obviously, if it helps spread the word, then I'm all for it, but I can't see how I can justify the extra time taken to maintain pages and forums there, when I'm struggling to keep up with stuff here. On the other hand, if my failures here are as bad as I suspect from my earlier paragraphs, perhaps I should close the forum here, and move to a platform that is less likely to influence bad life-changing decisions? As I said, all suggestions or offers of help are welcome, but it needs to be a separate topic, maybe in Wishlist.
Keith Taylor (GoutPal Admin)ParticipantDan said:
He believes that your should try to get off perscription drugs if at all possible. He claims the long term studies of drug therpy are not as promising as once believed. That years on some drugs are starting to cause other medical problems that doctors did not know about back then.
But there is one indisputable fact that you have to be very clear about. Years of uncontrolled high uric acid are completely ruinous to your health.
Allopurinol usage MUST be determined by uric acid test. Just because you have no gout flares, does not mean that gout is controlled. It is extremely common to go for years with no flares, but with urate deposits slowly building up. Gout flares are absolutely no indication in the short term that allopurinol is working. And in the long term, stopping allopurinol without reference to uric acid levels simply puts you at the highest possible risk for serious gout damage.
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I am not advocating indiscriminate long term use of unnecessary gout medications, but I'm bound by my principles of care, and by my love for humanity, to warn you that if you do not respect the principle of setting allopurinol dosage according to uric acid test results, you run a high risk of permanent damage to bone, cartilage and tendon tissue, and a medium risk of damage (which might be reversible) to kidneys and other body tissue. No amount of elderberry juice will fix that!
Keith Taylor (GoutPal Admin)Participantmaybegout said:
I think I'm going to ask my doc for some medication to lower my UA and see if it works, both as measured by the UA meter, and subjectively on the low level pain.? Last time I was there, in January when this first happened, he gave me indomethacin instead of colchicine, just in case I got a full attack, as he said he didn't like colchicine.? I haven't tried taking it to see if it gets rid of the low level pain.? If it does, will that prove anything, or is it just colchicine which is that selective on only gout pain?
Colchicine is not selective for only gout pain. It works by stopping rampant cell metabolism which is a feature of gout, but also other inflammatory diseases such as Familial Mediterranean Fever. In the case of gout, white blood cells are going crazy as a reaction to uric acid crystals. Half-poisoning your immune system with colchicine soon knocks it back to normality. Don't forget that it inhibits all cell metabolism, not just white blood cells, so overdosing is definitely not a good idea, though it would stop gout permanently, along with everything else.
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As for treating your symptoms, it proves that treating gout without a definite diagnosis is futile. The only way you can have gout attacks with such low uric acid readings (assuming the meter is reliable, and the sample size correct), is from old crystals dissolving. If this is the case, there will be plenty of crystals floating around in all your joints to provide fluids for testing. And you would be exceptionally rare in not having symptoms in other joints.
Low grade inflammation is a symptom of many health conditions, which may be aggravated by excess protein and/or alcohol coincident with the rise in uric acid levels. Proper inspection by a rheumatologist is your best option to diagnose what is really happening in your joint.
Keith Taylor (GoutPal Admin)ParticipantYes, Dan, this is the right place, and thank you.
I'll incorporate it into the Gout Home Remedies pages soon.
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In the last part, you talk about reducing dosage. Do you mean reducing dosage of allopurinol? This is very unwise without blood test results to confirm the drop in uric acid.
Keith Taylor (GoutPal Admin)Participant2011 Update
Please see the allopurinol common questions page for the latest answer to “Is allopurinol for the rest of my life?”
For more information, see Is Allopurinol A Lifetime Drug? in the allopurinol pages. You will find related information in the gout medications pages within the Gout Treatment Help Section.
Keith Taylor (GoutPal Admin)ParticipantDan said:
?but berries are fine for everything fro pies to jellies.
And don't forget wine
Elderberries have been mentioned before around here (Use the search box for a full list), and probably qualify for a bit of a write-up on the main gout site. There are two potential benefits for gout sufferers:
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1. Anthocyanins
These are the compounds that give color to cherries and metamorph's Black Bean Broth. There is at least one study suggesting that these natural compounds act in the same way as NSAIDs – a kind of natural ibuprofen / naproxen / indomethacin.
2. Quercetin
This is a flavonoid common in many foods. Elderberries are rich in quercetin, which is very high on my list for a better summary in the Gout Treatment section.
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Dan, please can you post that recipe?
March 22, 2011 at 2:20 am in reply to: My SUA went from 6.5 to 4.3 on 300mg of Allopurinol daily! Woohoo!! #11257Keith Taylor (GoutPal Admin)ParticipantIf the anti-inflammatories are having no effect, it might be unrelated to your gout. Think about getting an x-ray to see if there is some other problem.
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Also, if the 4.3 is the same reading as when you started this thread in February, it's time for retesting.
Keith Taylor (GoutPal Admin)ParticipantUric acid is more soluble at higher pH values, therefore if you alkalize your body, you reduce the risk of urate kidney stones, and there is a very, very small chance of reducing uric acid elsewhere by a very very small amount. The only reason I produced those charts is because some people recommend baking soda (sodium bicarbonate) as a benefit for gout sufferers, but that is not suitable for high blood pressure sufferers.
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Quite frankly, it is amongst the least useful of information, and certainly nowhere near as important as establishing exactly what your uric acid level is and producing a plan to manage it.
Iron, calories, & purines (in that order) are more important aspects of diet, and if you eat a healthy diet based on fresh food with plenty of fruit & veg, the acid/alkaline charts will probably not be relevant.
I know this doesn't exactly answer your question, but if you could be a bit more specidic about which part you do not understand, I'll try to give a better answer.
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I've never heard of L-Lysing. There is an amino acid called l-lysine, but it has nothing to do with gout.
Keith Taylor (GoutPal Admin)ParticipantWe need a bit more information to help you.
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How long have you been on allopurinol, and at what dose? It can take several months for allopurinol to get rid of the uric acid crystals that cause gout pain (See Allopurinol Medication: The Gout Cure That Can Hurt for more info). Once you get rid of the old crystals pain releif is not required, but until then, ask for colchicine.
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What are your exact results for uric acid? High / Low / Normal, are meaningless – it is the actual number that matters (see Normal Uric Acid? No Thanks! for explanation).
Keith Taylor (GoutPal Admin)ParticipantAccording to Colchicine Shelf Life, colchicine lasts 3 years in plastic bottles. Or 2 years in plastic covered strips.
?Give zip2play's experience, the 5 years could be the usual conservative estimate. 1 year just sounds like a ploy to sell more, but there might be something in the formulation that makes it less stable than standard (there have been various attempts to combine colchicine with products that reduce the associated stomach problems).
Keith Taylor (GoutPal Admin)ParticipantApparently Pfizer in Kalamazoo manufacture it, but you can't use it in the US!
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Please don't use this forum for this type of request. It is not why we are here. And if anyone does start peddling pharmaceuticals here, they will be deleted.
Keith Taylor (GoutPal Admin)ParticipantIs there something wrong with rolling around in the gutter?
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Just to eliminate what might be an obvious gout source (it can't be just me?). What's your height and weight, Simon?
Keith Taylor (GoutPal Admin)ParticipantGeorgedn said:
Keith,
I am disappointed that the uric acid was not checked.? I like my doctor and find that he listens and discusses things with me, however…? When i see him again I plan to suggest that I see a rheumatologist to manage my gout issues.
Though a rheumatologist isn't a bad idea, you need one who is experienced and up-to-date with latest gout management ideas. They are best used when diagnosis is not clear, or treatment is not working, or treatment is compromised by other health conditions.
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Simple gout management doesn't need a rheumatologist, but it does need someone who can measure uric acid in the blood, and adjust urate lowering treatment to suit – not exactly rocket science.
Keith Taylor (GoutPal Admin)ParticipantGeorgedn said:
Well, its turns out that the blood work done in December did not include uric acid test.? I'll be having blood drawn tomorrow morning for that test.? Also, was advised by the physician's assistant that I could take Indomethacin with the Prednisone.
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First, you've been badly let down from the uric acid management poin of view. For the first few months, it is vital that you have a clear picture of your uric acid level in the blood. Getting it below 6mg/dL will prevent further deposits forming, but the first few months benefit from an even lower level, as this determines how long it takes to get rid of old crystals.
Come back with the test results, and we will discuss further.
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Until you get rid of the crystals, as you have found indomethacin effective, it is better to stick to that. You need to clarify the best way forward with your doctor, especially discuss the points that I have discussed with doctors and rheumatologists in the past:
1. Discuss the view that NSAIDs such as indomethacin can be used at higher than normal doses to treat gout, as long as maximum dose is not breached, and if kept to short periods (which is valid as most gout attacks only last a few days, especially when urate lowering therapy is set at the correct dose).
2. Discuss the view that prednisone should only be used as a last resort, as it suppresses production of the bodies natural pain relieving hormones.
Keith Taylor (GoutPal Admin)ParticipantGeorgedn said:
? So, what does a guy believe and what does a guy not believe???
Please believe what I've written in Gout Diet Contradictions.
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Keep diet in the gout diet topic.
January 18, 2011 at 1:22 am in reply to: Allopurinol and my Gout – Attack after starting meds. #10927Keith Taylor (GoutPal Admin)Participantburgeszz said:
?I was readiing that Allopurinol will actually cause flare ups for a little while after you start it. ?My doc didn't prescribe me anything at all to take along with it and I don't want to go back to the doc…. ?any suggestions?
Yes, it might, even probably will, but not definitely will. Painkillers (especially colchicine) will deal with it. Discuss this with your doctor, because you MUST go back.
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Correct uric acid management depends on monitoring your uric acid level. You must get checked at least once a year whenever you are taking uric acid lowering meds. In the early stages, this needs to be once a month until your dose is stabilized.
January 18, 2011 at 1:15 am in reply to: Cutting out Chicken stopped 95% of my gout attacks (15 yr gout sufferer here) #10926Keith Taylor (GoutPal Admin)ParticipantWise words toofast.
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The last thing a gout suffererer needs is superstions about chicken (or any other single foodstuff).
Keith Taylor (GoutPal Admin)ParticipantGerry said:
Keith, that page you gave the link to is great. Why do we have different ways of measuring uric acid in different countries ?
Not different ways of measuring – just different scales, just like some countries govern road speeds in km/h where others use miles.
I appreciate your comments but am a little reluctant do increase the dose of probenecid (edit:2 by 500mg per day) as it seems to be working as is plus I am always wary of other effects of these drugs.
No worries – you are on the right track, so as long as your level remains in the safe zone, your gout will improve.
I was reading elsewhere on this forum the amount of water that some drink and was amazed at the amount some consume as I can only get about 2 litres a day down.
That amount is fine – drinking too much can strain the kidneys, so 2.5l per day is about the max, increased only to account for excess sweating.
The dietician I visit has suggested among other things, taking chewable vitamen c tablets and drinking more coffee.I notice here that some do not think diet is really effective so would be interested as to what you think about those 2 items (I dont normally drink much coffee)
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In my view diet can be effective, but you have to be very clear about your goals, and not expect miracles. There are some substances that appear to lower uric acid. The two you mention, plus skim milk and onions, possibly orange juice (but beware excess fructose) have been shown to lower uric acid, but effects depend on how high uric acid is to start with. Thus, if probenecid is already lowering uric acid, the effects of these foods will diminish. The only way to know is to fix your diet, then add one of the aforementioned until the next test, then swap for another addition until the next test. You'd need to repeat this several times to be sure which foods were beneficial. It sounds very boring to me
By the way, if you do opt for vitamin C, then I believe 500mg/day is suitable – some vendors promote megadoses, but these may have a poor effect on uric acid levels, as they compete for excretion in the kidneys.
Keith Taylor (GoutPal Admin)ParticipantGerry said:
I am now on Probenecid to lower the uric acid and a recent blood test put the uric acid level at 0.32 mmo1/L
This seems a different way of expressing it to anything I can find here.
Hi Gerry,
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See the tables on uric acid levels, also reproduced on the left (top and repeated at the bottom because they are Important).
mmol/L is common in many countries outside USA. From the table, 0.32 is in the safe zone, and should stop new crystals forming.
Old crystals will dissolve slowly, and eventually you will see tophi disappear. You can escalate this process by lowering uric acid further for a few months. Discuss increasing probenecid dose, or supplementing with allopurinol, with your doctor.
mmol/L Keith Taylor (GoutPal Admin)ParticipantMy research to date indicates that there is a small proportion of general doctors who have studied gout, and are capable and experienced in managing it.
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On the other hand, there is a small proportion of rheumatologists who believe gout is a self-inflicted condision and they have no time for it, and no experience diagnosing it correctly.
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The only answer I can find to the problem of getting stuck with a doctor who knows too little is to read GoutPal.com, discuss the problem here, then instruct your doctor clearly and precisely, or find a new one.
Keith Taylor (GoutPal Admin)Participanthansinnm said:
Keith (Gout Admin) said:
…
A final thought on the pain vs uric acid issue. I was chatting with my gouty brother-in-law over the holiday. He is firmly in the gout pain camp. “What's the point of taking a pill everyday, when I only need a few pain-killers once or twice a year?”
A perfectly valid point of view, and I imagine he'd welcome the ice pack.
Keith, I hope that wasn't you who said that is: A perfectly valid point of view...
?That is about the dumbest view point a rational, intelligent person can have!!! While s/he cuddles her/his pain brain, Mother Nature says: Have at it! I'll make damn sure you'll remember your stupidity down the line while I increase your uric acid in your blood.
Your gouty brother-in-law should apply for a job with the pharma industry. Since their motto is: Treat the symptoms, not the cause, he'd make an excellent salesman for them.
(Keith, I am really angry with you. I would have expected that statement from any body else, but not from YOU, who always says: Manage your GOUT. I have NEVER heard you saying: Manage your pain.)
Hans, I'm only here to help and advise. If someone wants to accept the risks of elevated uric acid, then they are perfectly within their rights to do so. Just as people have the right to smoke, partake in dangerous sports and many other aspects of the human condition, which is rarely bound by logic.
It only becomes unacceptable, to me, when the decision harms other people, or it is made in clear ignorance or through being duped.
The choice of ice to relieve gout pain (he said, desperately trying to keep this discussion on-topic) might not seem like the logical choice, but it does not make it invalid. As Brett has explained, there is clear evidence that ice is beneficial for gout pain. If all you worry about is gout pain, then a solution that brings immediate relief is valid. After all, my view that it might cause problems on the uric acid management front is not based on anything other than the well established fact that uric acid crystals form more readily at lower temperatures. I believe that ice to control gout pain ignores some vital issues regarding uric acid management, but it is difficult to prove. I can prove that prolonged exposure to cold is extremely bad for gout, but for short term relief, I can only say that, for me at least, it is not worth the risk.
There are wider issues at work here, including belief systems, attitudes to pain, attitudes to medicines, life goals etc, etc.
I'll state my case, of which I'm certain, but it is only my way.
In order to keep this discussion to ice, I'll start a new discussion in the Your Gout forum to try and explain my philosophy a little better.
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