Keith Taylor

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  • in reply to: Probenecid Questions – How Probenecid Helps Gout #1422
    Keith Taylor
    Participant


    Hi Gary,

    I think your doctor is right to take this seriously. 9.1 is far too high for uric acid.

    Even though you can manage occasional pain now, it’s going to get worse. Untreated high uric acid means that crystals are developing in your body every day.

    Some days, your immune system deals with uric acid crystals without you noticing. Other days, you get symptoms that range from a little itching or discomfort, through to full-blown gouty agony. It gets worse after that, as joints start to crumble. It’s especially bad if your prone to kidney stones. Untreated gout leads to kidney damage. And, skin and heart are other common targets. All organs apart from the brain are at risk.

    I wanted to mention all that to underline the dangers. Also, to point out that your second gout attack was nothing to do with red wine. It was caused by crystals that started to grow many months, or years, ago.

    But, your main question is about choice of treatment.

    Probenecid is usually prescribed for patients who have low uric acid excretion rates. This is tested by measuring the amount of uric acid in urine over a 24-hour period. Have you had that test?

    Allopurinol is best targeted at over-producers. However, it can be effective for some under-excreters as well. So, many doctors try allopurinol first. Then, they might introduce probenecid if allopurinol isn’t getting uric acid low enough.

    After 6 months of safe uric acid levels, you definitely do not need colchicine.

    If you’ve lost confidence in your GP, I think it’s best to see a rheumatologist. I guess it depends how easy it is for you to see one. Also, we might get to understand your GP’s reasoning better if we know about the urine test I mentioned.

    It comes down to whatever you think is best for you.

    in reply to: Alternative Cures for Gout or Pseudogout #1400
    Keith Taylor
    Participant

    By the way, William, it’s perfectly OK to refuse a label. I can start a sub-forum for Gout Individuals within the personal gout forums.

    in reply to: Alternative Cures for Gout or Pseudogout #1398
    Keith Taylor
    Participant

    Thanks again William. Keep the info coming, but let’s have a bit of organization.

    Your early paragraphs in last response are interesting. But, not particularly gout-related. Please consider writing more in General Discussion. That helps me get to know you. I hope it might also encourage others to write there.

    Let’s just say that doctors are a gout control resource. Useful for tests and safety checks. For tests, I believe there’s an American Culture of walk-in labs. Are these feasible for you, William?

    Although your gout diagnosis is not 100%, your uric acid is high. So, I believe it is sensible to lower it. Most gout sufferers have other conditions that contribute to the malaise. Maybe your shoulder is something different. It won’t harm to lower uric acid as far below 6 as possible.

    My next step is to set up a subforum dedicated to you, William. I’m going to organize personal forums by Gout Group. Which Gout Group do you most identify yourself with, William?

    in reply to: Alternative Cures for Gout or Pseudogout #1385
    Keith Taylor
    Participant

    Wow! Thanks for all that information, William. It’s going to take me a while to go through that list of supplements. I’ll be as quick as I can, but I have to point out I’m on short hours this week, as I have some fatherly duties to perform.

    There’s one important thing that I should have mentioned. When we seek gout control through herbal medicine and lifestyle adjustments, a 24-hour urine test is important. That measures uric acid excretion in a day. It tells us if we are an under-excreter or over-producer. It’s not so important for allopurinol or febuxostat users. Those drugs are so effective at limiting uric acid production, they usually help under-excreters as well as over producers. Herbal medicines are less potent, so it helps to know the baseline.

    It’s your choice. It isn’t a deal-breaker, but it makes treatment targeting easier.

    Diet
    Whatever you’ve been reading – stop it now!

    Purines and proteins are completely different. Also, you should only ever worry about purines when you are certain you do not carry excess weight. My reason for saying that is the purine content of a few pounds of excess human flesh makes any food intake savings unimportant.

    Protein is a wonderful natural uricosuric (i.e. it promotes uric acid excretion). However, balance is crucial. We cannot take a bad diet and make it good by adding low-animal-purine protein sources. We need to take a fundamentally healthy diet, and tweak it for better gout control. That means, I need more information.

    I need to know your height, weight, and activity levels. Do you exercise regularly? If so, how many hours per week? I also need to understand what you eat. It’s fantastic you avoid chemical additives. I know that it can be tedious keeping a food diary, but analysis of your current diet is vital to me. One option would be to send me photos of your food bills. Whatever is easiest for you. I plan to create a specific sub-forum for this project, so maybe you can just post what you eat there each day.

    Gout/Pseudogout symptoms
    Whoever wrote “They say pseudogout pain strikes knee first. They say gout pain attacks toe first.” doesn’t understand.

    Statistically, pseudogout tends to start in larger joints. Gout tends to start in smaller joints. But, the reasons are not fully understood. We know more about gout. We know that temperature is an important factor. That is a combination of external temperature and blood circulation. Poor circulation in some joints can cause internal temperature to be low. That encourages uric acid crystals to form there first. But, they will spread to every joint.

    The only way to distinguish gout and pseudogout is to analyze joint fluid. There are improvements to scanning technologies that will make this easier. But, few gout sufferers have access to DECT. Ultrasound is more accessible, but it relies on people having the right training to distinguish urate crystal patterns from calcium crystal patterns.

    Dissolving uric acid crystals
    “does this cause symptoms to get worse and for how long”
    It’s a personal process that depends on your gout history, and current uric acid levels. In theory, gout attacks caused by lowering uric acid should be less in herbal medicine/lifestyle. I say this because levels during treatment are unlikely to drop as quickly as they would with allopurinol. Just as with gout attacks from high uric acid, it’s a numbers game.

    As uric acid crystals dissolve, the immune system coating tends to drop. This reveals partially dissolved crystals. If the coatings of a few hundred uric acid crystals drop, we are unlikely to notice symptoms. If several thousand become exposed, we get a gout attack. That is made more complicated if dissolving uric acid crystals raise blood uric acid levels. New crystals forming might also trigger attacks. Blood test results are critical to understanding this process.

    So, it’s impossible to say how long.

    I have a very loose guideline that says recovery should take one month for every year you have had gout. There are lots of personal factors that will affect that. But, in your case William, we’re a million miles from that. The truth is, no matter how much we both believe you have gout, you don’t actually have a diagnosis. I’m going to stick my neck out and match your opening:
    “I have an uncommon type of gout. Mine started gradually. i think it started 5 or 10 years ago.”

    We have started an uncommon approach to gout control. We’ve started gradually. I think I can be confident we’ll resolve the problem within 5 to 10 years.

    It should be sooner than 5 years, but my confidence in that depends on our progress. Ask me again in a month or so.

    Uric Acid Test Timing
    It’s important to be consistent. Choose the most convenient time of day. Always eat at the same time before test time. Most convenient would be to test after you wake, before breakfast. But, do you tend to have regular sleeping/eating patterns? This is just one of many factors why I said you need to be meticulous.

    In some respects, it doesn’t matter. That’s because you are best to measure averages. I.e. test every day, but focus on weekly average. The average should ignore any abnormally high, or low, results. The average is the truest picture you will get. It must be below 6mg/dL. In reality, I might accept an occasional 6.1 or 6.2, if the average is below 6.

    What you must never do is associate your test result with something you consumed the previous day. If you suspect an association, it needs fastidious, scientific testing.

    What Next?
    I have to say, William, you will be my first project for gout control by herbal/lifestyle adjustments, if we are successful. I tried it myself, and could not maintain the discipline. Daily allopurinol is the easy option for someone like me. Also, I trust allopurinol manufactured by controlled labs in my own country. At least, I trust that far more than untested supplements promoted using unreliable pseudoscience from the backstreets of Hyderabad. (Just being honest, so you understand me better).

    Other gout forum members have tried natural gout treatment, and given up. You seem very committed, so there is hope. If I’m to help, we need to continue an almost daily conversation. You’ll have to get used to my tendency to analyze everything in great detail. Are you up for it?

    Whatever becomes of this, William, thank you for some interesting thoughts and a great discussion. ๐Ÿ™‚

    in reply to: Alternative Cures for Gout or Pseudogout #1376
    Keith Taylor
    Participant

    I’ve flagged Risky Uric Acid Levels for review.

    Who is interested in uric acid levels in the range 6-7mg/dL (350 – 400ยตmol/L or 0.35-0.4mmol/L)? Please vote for Review Risky Uric Acid Levels by clicking the like button on that topic.

    Why is voting important? Because, Itโ€™s Your GoutPal!

    in reply to: gout attack with normal level of uric acid #1375
    Keith Taylor
    Participant

    Review Risky Uric Acid Levels

    From a discussion today, I identified that Risky Uric Acid Levels needs to be reviewed.

    So far, I’ve identified:

    • It needs a summary of key points.
    • Uric acid in the blood usually falls during a gout attack.
    • Next step is usually get a followup test to establish Base-line uric acid level.
    • Crystallization point falls as temperature falls. So, risks of gout are much more in this range if joint temperature is lower than 98.6F

    But also, like all GoutPal pages, it needs a clearly identified audience/purpose and a takehome message.

    Most importantly, I think it needs to be more relevant to typical gout sufferers. Because, as we see from this discussion, doctors and patients fail to see that the higher end of the normal uric acid range is risky. Or even dangerous!

    So how do you think I could improve my Risky Uric Acid Levels page to make it clear that getting uric acid normal does not remove the risk of gout attacks?

    in reply to: Alternative Cures for Gout or Pseudogout #1374
    Keith Taylor
    Participant

    Pseudogout, as a form of arthritis, is in the realm of the rheumatologist. Personally, I know very little about it. In any case, as you wrote, there are lots of different types of arthritis. Gout is just one, so when not certain, I recommend starting with GoutPal Plan for Arthritis Sufferers.

    I know pseudogout is much harder to treat than gout. If the doctor can identify an underlying cause that is treatable, then pseudogout can be cured.

    I think gout is most likely. But, I don’t have much info to go on. Most important is uric acid history. Single results are only useful if they’re in the safe or dangerous range. Assuming your scale is mg/dL, you’re in the risky uric acid range.

    I’ve just had a look at that page. I can see it needs a summary. More important, it needs to emphasize:

    1. You usually get tested first during an attack. Uric acid in the blood usually falls during an attack. This is because some uric acid has crystallized from the blood, and reduces the dissolved amount that is measured by the blood test.
    2. You need to establish your baseline uric acid level. Get another blood test once symptoms have resolved.
    3. Although the crystallization point for uric acid is deemed to be 6.8mg/dL, this is at normal blood temperature. Crystallization point falls as temperature falls.

    That last point is significant in the diagnosis of symptoms. Generally speaking, gout presents first in the big toe. However, from memory, this is only about 60% of cases. It certainly was not the case with me. The first doctor I saw refuted gout because my ankle was affected, not my toe. It actually depends on personal circumstances. Environmental factors, and personal blood circulation situation will determine your “cold spots”. That is where gout will first start to show. If uric acid is not controlled, gout will spread to all joints.

    There’s another factor, which is an inflammatory response. That can also vary from person to person. It’s just another factor that indicates how difficult gout diagnosis can be where symptoms are not straightforward.

    So, what’s next, William?

    I recommend monthly blood tests to get a true picture. I know you want to do this yourself. I just hope you are fastidious and patient enough. It takes time to establish reliable test routines. You have to be meticulous with cleanliness and consistency. I’ll help where I can.

    I can also help with the rest of your list of alternative cures for gout:

    Life Extension Uric Acid Support supplement 2Xday with food
    Natto-Serra 2Xday
    Bromelain enteric 500mg 2xday
    3200mg malic Acid 3xday with food
    Alfalfa in water / drink thru day

    But, you are going to have to tell me everything you know about each of those, including how you expect it to affect your health. There are lots of important things you haven’t mentioned. We can deal with those later. The good news is, if that tiny list is all you are doing, I’m confident you can lower uric acid to safe levels with lifestyle changes.

    Alternative Cure for Gout image

    Which alternative cure for gout will you choose?

    Keith Taylor
    Participant

    That’s great, Marilyn. If you’ve been taking 150mg OK without any problems, then I would continue. My suggestion for splitting again, was just to be cautious, if you hadn’t started the allopurinol first.

    I wish you continued success with your treatment. And I hope to read you’ve made a full recovery soon. ๐Ÿ™‚

    in reply to: Serious gout pain in foot! From Chicken Chow Mein? #1262
    Keith Taylor
    Participant

    @chris-page Am I right in assuming this allopurinol treatment support request is resolved now?

    If so, please can you changed the status to Resolved.

    Keith Taylor
    Participant

    Hi again, Marilyn,

    You got some great responses from Craig and Rod. I hope they help.

    When I reviewed Beating Gout by Victor Konshin, I was very impressed. I remember thinking that if it had been around when I first got gout, I’d never have started GoutPal. Of course, you can’t compare a book to a website, but it is a helpful publication. I don’t know if it covers the latest professional rheumatologists recommendations for gout treatment. Certainly, be careful about using the book to get gout medication doses. They should come from a knowledgeable doctor. If you can find one!

    300mg is too high to start allopurinol. It’s a serious health risk to do that. Best to change them for 100mg, so you can do what Rod advises. If not, splitting them gives you 150mg. 50 to 100mg is the clear recommended starting dose for allopurinol from the American College of Rheumatologists. So, best to split twice and start on 75mg per day.

    What are your thoughts Marilyn?

    in reply to: Serious gout pain in foot! From Chicken Chow Mein? #1235
    Keith Taylor
    Participant

    How high is “high”?

    Really good to know the aches have gone. Time to enjoy the summer. ๐Ÿ˜€

    in reply to: Serious gout pain in foot! From Chicken Chow Mein? #1228
    Keith Taylor
    Participant

    Hey Chris @chris-page

    Did you get your uric acid blood test? Any news on your allopurinol treatment?

    in reply to: Home test kit UA variations #1226
    Keith Taylor
    Participant

    Been there. Done that! ๐Ÿ˜ฅ

    Sorry, that’s not helpful. I also made the same mistake of upsetting myself with home uric acid testing. Eventually, I worked out a way to be confident I was testing correctly. By then, I realized that, for me, the test strips were too expensive. And, for accuracy, you have to test very frequently. Then discard any high or low results, and use an average.

    It’s not usually a fault of the test unit itself. But, they are scientific instruments therefore:

    Order a Blood Uric Acid Kit from a reputable supplier, who offers money-back guarantees and product support. [Uric acid test kit]

    The problems usually come from how you use them. What training have you had in using scientific instruments? Do you want to tell me your complete testing routine? Then, I’ll see if I can suggest some improvements to get better consistency. There’s more information here if you search for something like “home UA kit”.

    Your doctor should have explained that it takes years for uric acid crystals to accumulate before symptoms show as gout. He’s right that healthy diet and exercise are good for gout sufferers. But, he should have warned you – it takes years for diet changes to have significant effect.

    He should also have warned you that gout is not just about diet. It’s often important. But, so are other factors. Excess iron is a common problem. So is genetics – and dieting will not change your ancestors.

    All of that probably adds to your misery. So, let’s talk about what to do next.

    First, you’ve made massive progress with diet and exercise. You’ve shown you can do it. If you only want to consider diet, I hope I can encourage you with that. I might be able to suggest some diet improvements that help your gout. Do you have a target weight in mind? If so, how long do you think it will take to achieve it?

    in reply to: Hemochromatosis and Secondary Gout #1225
    Keith Taylor
    Participant

    Thanks Rod.

    My only concern is that doctors might have the same misunderstanding of “normal” with iron, as they do with uric acid.

    Uric acid tests are usually accompanied by a range. It’s often called “Normal” or “Reference” range. Normal is a statistical term that describes where most of the population fit. Since results are based on all tests in the sample period, they include people with medically unsafe uric acid. In other words, Normal = Medically Meaningless Nonsense.

    My problem, is lack of specific information about iron blood test results. I don’t understand what is right, and what is wrong. Unlike uric acid, where I know exactly what is a safe level, I don’t understand safe iron levels.

    We can do without uric acid, but the same is not true of iron. So, there must be a safe range with lower and upper limits. I also get confused by all the different types of blood test.

    Anyway, as I get time, I’ll continue my review of Improving Gout & Iron Guidelines. Hopefully, from that, I can determine the relative importance of different iron tests for gout sufferers. If I can’t establish safe levels, I can at least hope to identify where results suggest further investigation.

    in reply to: Is iron overload linked to high uric acid? #1211
    Keith Taylor
    Participant

    Hi NickC,

    You have helped turn gout and iron back into the latest hot topic for me.

    I’ve still got some reviewing and summarizing to do, but I’ve collected most of the facts and discussions together now.

    For me, your blood test results are a fascinating addition to this. But at the moment, I know very little about managing iron levels. I’m going to work out what those 4 different results mean, and try get it all in context.

    From what I’ve seen so far, I think reducing serum ferritin to 100 has a significant positive effect on uric acid. At least, in some cases.

    You’re the second person to mention wheat grass. It’s been suggested that this is the best chelator. That’s another important aspect iron management that I need to learn a lot about.

    I can’t thank you enough for the information you’ve already given. I hope I can squeeze more facts and insight from you, in the form of comments at Improving Gout & Iron Guidelines.

    in reply to: Hemochromatosis and Secondary Gout #1210
    Keith Taylor
    Participant

    Hey Rod,

    Thanks a million for this post.

    I’ve been working on a response for a couple of days. Over the years, we’ve had lots of discussions about iron and gout. We’ve seen new research suggest blood donation as a “cure” for excess iron. But, never really looked at causes, beyond trying to reduce iron consumption. I’d never considered the hemochromatosis angle before.

    Anyway, I’ve created a place to draw new research and collective experience together. I hope you can add to the knowledge with details of your diagnosis and treatment for hemochromatosis.

    We’re always very short of real-world facts. It would be great to see details of relevant blood tests, and there results. What exactly do we test for? What is a safe range? (NOT a statistical normal average!) What are the best treatments?

    It could be that your suspicions are right about hemochromatosis among gout sufferers. If that’s true, experience tells me that it will be up to us to do something about it.

    To Rod, and everyone else, thank you for any experience and facts about iron related to gout. Please share at Improving Gout & Iron Guidelines.

    in reply to: General Gout Victim Discussions #1183
    Keith Taylor
    Participant

    Rheumatoid arthritis is different from gout. You need a gout specialist. If you can’t find one, we’ll have to work something else out.

    The main question is “What can we do about your allopurinol intolerance?”

    I’ve searched GoutPal for allopurinol intolerance. You can do the same search using the search box at the top right of every page. I’m not sure if any of those results pages will help you. Please have a look, and let me know.

    Normally, in cases of allopurinol intolerance, I recommend an alternative to allopurinol. Usually, I would suggest some kind of uricosuric, Krystexxa, or febuxostat. However, I know absolutely nothing about sourcing these drugs in South Africa. Certainly, I can see no obvious way to buy febuxostat or probenecid. However, there are many uricosurics that are used to treat other conditions. Your doctor might be able to supply these, but first you need a 24-hour urine test. I recommend arranging that urine test now. If you are a uric acid under-excreter, it makes treatment easier.

    Remember, untreated high uric acid is dangerous. So, we have to do something to get your uric acid safe. The last resort is allopurinol desensitization. It has been shown to be effective. In most countries, febuxostat is an easier choice. But allopurinol desensitization might be exactly what you need, Tony.

    Have a look at some existing information by searching GoutPal for allopurinol desensitization. If you agree with me that it might be useful, then I can help you and your doctor create a safe titration plan. Let me know what you think.

    I haven’t addressed the colchicine point. Let me know if my colchicine guidelines need clarification.

    Gout is often mistaken for Carpel Tunnel Syndrome. Or, gout causes it. Either way, we’ve got to get your uric acid safe. I can’t see your uric acid level. Do you have test results?

Viewing 17 posts - 630 through 646 (of 698 total)