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  • in reply to: Am i checking to often #21515
    KeithTaylor
    Participant

    Testing frequency really depends on what you are trying to achieve.

    When I used my uric acid test meter, I used to test most days. I was trying to understand how my uric acid levels responded to diet changes and weight loss.
    For weight loss, it probably made more sense to test monthly, but I also wanted to see if reducing my meat intake would reduce my uric acid levels. In the end, though I could see an improvement, I realized it was insufficient to make my uric acid safe. Eventually, I gave up on the meter due to the expense of test strips.

    Along the way I realized several facts about testing that are important:
    – Always test at the same time of day (unless you are trying to see the effects of particular foods, supplements, etc).
    – Always test at the same time relative to meals.
    – Be scrupulously clean and methodical in your testing procedure.
    – Pay very careful attention to blood droplet size – it must always be the same for consistent results.
    – Trends and averages are more important than single results
    – Be prepared to ignore abnormally high or low results
    – Be prepared to waste several strips whilst gaining a consistent testing routine.

    Other home testers have found it very useful to compare home tests with occasional lab tests. I seem to recall one person using his test machine with a droplet of blood taken for lab testing.

    in reply to: Safe gout exercise #17090
    KeithTaylor
    Participant

    The key to losing weight with gout is to do it gradually. It’s amazing how soon you notice a difference if you just lose two or three pounds a week. Weight is much more likely to stay off if you do it this way. Aim for improving habits that will stay with you rather than rapid weight loss that causes more harm than good.

    I recommend you login, and add your height and weight to your personal gout profile, together with the facts about your gout that you have shared here. Then ask for more safe ways to exercise with gout, once we have more relevant facts. If you don’t want to login, you can still keep your personal gout profile in your own records. Just be sure to include the important facts in your questions.

    in reply to: FMLA #16694
    KeithTaylor
    Participant

    To me, FMLA seems to rely on a person’s individual circumstances. If it is not treated properly, I can see how gout could prevent someone from working.

    Is anyone going to explain to me why they think FMLA might apply? Then I could give some better answers from a gout point of view.

    in reply to: Gout treatment what to do(need your help) #16677
    KeithTaylor
    Participant

    This is where it get’s awkward.

    I know why doctors get bothered when patients tell them they did research online. It’s because there is a lot of bad information. I’ve had the joy of seeing a great doctor who kept a list of good websites to encourage his patients to look at helpful stuff. Not many do that.

    I get annoyed by so-called professionals who claim what they do is right because they’ve always done it that way. Have they never heard of “Continuing Professional Education?”

    The trouble is, we all need our doctors. They are best placed to understand the risks of treatment. They are the only ones who can prescribe medicines we need. I’ve found my way forward is to try and find good doctors who will listen to what I have to say (as long as I’m talking sense). For the rest, you have to carefully prepare and present the relevant facts.

    The easy way is to say “I don’t give a **** about your years of experience! Professional rheumatologists in America, Britain, and Europe have invested in guidelines that tell people like you how to treat people like me. Now go and read whichever one you can get your hands on, then treat me according to current standards.” If you want to be really rude, you can give them some words of wisdom about leeches not being used quite so much these days.

    My point is, you have to find a way to work with your doctor, or find a new one. You know what you’ve been told is wrong. I know what you’ve been told is wrong. I am not here to tell you what to do next, but when I learn more about what is important to you, I can give better suggestions.

    Your doctor said “don’t believe everything you read” That is very good advice, but you have to come back with hard facts. In your case, the important facts are 2012 American College of Rheumatology Guidelines for Management of Gout. Part 1. Your doctor should have a copy, so ask him what he thinks of the new stuff under “Significance & Innovations”. If he doesn’t have a copy, you can point him to https://www.rheumatology.org/practice/clinical/guidelines/Gout_Part_1_ACR-12-0014.pdf

    Specifically ask him about “The starting dosage of allopurinol should be no greater than 100 mg/day”. If you want to push him, ask how many of those gout patients he’s been prescribing are fit and well. Is their uric acid safely at 5mg/dL or below? He probably won’t know, but I’m guessing most are still suffering needlessly. Actually, that’s not a guess. Study after study shows that most doctors fail to set a safe upper target for uric acid.

    2 Other points:

    1. I’ve been looking at the Profile, and it needs to be easier to add more information. At the moment, it is only good for one paragraph, so make that about whatever is most important to you now. I’ll improve it as soon as I can.

    2. You’ve inspired me to be more proactive about building the doctor-patient relationship. The best way I can help any gout sufferer is to help them form good relationships with all their medical advisers. I’m going to give that more thought, and try come up with some easy, practical ways to make sure everybody gets better medical help.

    Thank you for your support. Sorry if this is a bit of a rant, but you touched a nerve – or rather, your doctor’s attitude did.

    in reply to: Gout treatment what to do(need your help) #16532
    KeithTaylor
    Participant

    11% is not a valid measure for uric acid. See multicolored list halfway down right hand sidebar.

    1. I have no idea why your doctor would not prescribe colchicine or other pain relief during uric acid lowering. What did your doctor say?
    2. Why would you change doctors? Do you think you can train another doctor easier?
    3. Allopurinol is better than Uloric in terms of cost, and it has a long record. Uloric is better if you are in one of the genetic risk groups, and your doctor doesn’t know about allopurinol sensitivity screening.
    4. If your lump is a tophus it should shrink, but might take years to go completely, if ever.
    5. Uric acid lowering treatment dosage must be set by blood test results. Primarily uric acid test results, but liver function and kidney function are also important. In fact, if you didn’t get those function tests before the offer of a script, the answer to 2 is definitely YES.

    Good luck with the baby.
    You are at risk of a gout flare if you take uric acid lowering treatment, until the bulk of old crystals have dissolved.
    You are certain to get a gout flare and suffer more joint damage if you do not take uric acid lowering treatment.
    That is why gout sufferers need effective pain treatment.
    It is also very easy to achieve gout pain relief unless you have other medical complications – http://www.goutpal.com/gout-treatment/stop-gout/gout-attack/acute-gout-attack/

    Tell me about depression! Been about a year for me now. Nobody cares. I did get a lift yesterday. A very kind person sent me a $20 donation so I can eat next week. Whoop! http://www.goutpal.com/gouty/help-for-gout/

    in reply to: FRUCTOSE????? #15175
    KeithTaylor
    Participant

    This Uric Acid and Fructose discussion is now closed. Please see my Uric Acid, Diet & Fructose page. If you still have questions about fructose and gout, please start a new topic here.

    in reply to: Started Purixa Today #14959
    KeithTaylor
    Participant

    I don’t know of any studies, but I hope individuals, especially the OP here, will share their PURIXA experience.

    Personally, I’ll take the milk protein from skim milk, the vitamin C from food, the resveratrol from red wine, and the green tea from, er …, green tea.

    in reply to: Started Purixa Today #14882
    KeithTaylor
    Participant

    PURIXA has been around a while, and Bob, the PURIXA creator, writes occasional articles for my website.

    You probably know that I am firmly in the allopurinol camp, but I do not mind working with open-minded people about alternatives. In this case, I can see that the active ingredients all have uric acid lowering properties. Whether it is enough will vary from one person to the next, so uric acid testing is just as important as it is with allopurinol.

    We all have our own reasons for choosing different ways of treating gout. I’m looking forward to some follow-up uric acid values, if tizawiza77 can get some consistent readings. I can almost hear my good friends thoughts on this, but I’ll leave it for zip2play to suggest that there is an easier way. 🙂

    in reply to: Is there a DECT machine in or around Portland Oregon? #14875
    KeithTaylor
    Participant

    As this is the latest discussion regarding DECT and gout, I’ll add some news here.

    Many moons ago, I wrote about DECT in the context of Gouty Tophi & Bone Erosion. I quoted some research from Nicola Dalbeth in New Zealand, and it seems she has continued to research this topic.

    In a recently published letter to a European journal for rheumatic diseases, several researchers from the University of Aukland, have warned against over-reliance on DECT technology. They claim exclusive comparisons with other advanced imaging technology reveals a weakness with DECT. In “DECT urate deposits: now you see them, now you don’t” they argue that a specific weakness of the DECT system is it’s reliance on getting the software setup properly. Unlike techniques that rely on medical interpretation, the DECT gout recognition software interprets results based on settings within the program. Get those settings wrong, and you do not see the gout crystals.

    The authors point out:

    When performing DECT to detect urate deposits in gout, the slope of the line separating urate from calcium-containing voxels [values] is extremely important. Two points may be very close together on the 2D plot (indicating similar density), but if they are on opposite sides of this line, one receives positive color coding and the other negative. The slope of this line is dictated by the ‘parameter ratio’ which may be arbitrarily set

    My feelings are that DECT may well be a great timesaver in future, but we are a long way from widespread availability with trustworthy techniques. As always with gout, if there are complications, your best option is to consult a rheumatologist.

    in reply to: Started Purixa Today #14870
    KeithTaylor
    Participant

    Please keep us updated on the PURIXA. Sorry, you can’t add comments yet in my Gout Store page on PURIXA – I’m still working out how to let people comment on products, so best to use the gout resources forum here.

    As for the monitor, whilst there is always the possibility it’s faulty, the usual cause is lack of consistency. Personally, I found it took a few tests before I got into a good routine. It’s a matter of keeping everything consistent, especially :

    • same time of day
    • same blood drop size
    • clean hands

    Might be better to start a new topic, and describe exactly what you do now.

    in reply to: Gout and donating blood #14862
    KeithTaylor
    Participant

    It is notoriously difficult to control iron with diet. Most of the time, we are not aware how much iron we consume. You might do it if you study labels carefully, avoid processed food, and never eat out, but there are other issues.

    Our bodies have complicated processed for storing iron until we need it, so it is more than just controlling what we eat.

    There is a process called chelation whereby iron combines with other substances to form harmless compounds. This is also very complicated. From a dietary point of view, green tea is one dietary item that will chelate iron, but only as it passes through the digestive system, so you have to drink green tea with your meals. I have seen references that the compounds in dark fruits can combine with iron outside the digestive tract, but these should be eaten alone – e.g. cherry snacks between meals.

    This is largely ongoing research for me, and I am uncertain what the practical effects are. That is why I suggest blood donation, as removing blood has definitely been shown to improve gout.

    By the way, if you click your username (left hand column), it will take you to your index page where you can see all the posts you have started or replied to. That way, you can easily find where you posted in the past, and keep your contributions on certain topics together.

    in reply to: Uric Acid and Iron – a bad mix for gout #14820
    KeithTaylor
    Participant

    Thank you. @Tizawiza77 for reopening this issue. There is slightly more information available than when I wrote my first gout and iron article. I’ve revisited gout and iron today, and made myself a note to add some specific practical advice to the guidelines.

    In essence, donate blood whenever you can, and adopt the best dietary control you can. It is notoriously difficult to control iron through diet, but some simple changes can make a difference.

    Simple things like taking green tea with a meal, and eating dark fruits between meals should help.

    in reply to: Uric Acid and Iron – a bad mix for gout #14815
    KeithTaylor
    Participant

    Here are a couple of online searches to find blood donation by zip code:

    Americas Blood Centers [bad link removed]
    American Red Cross

    In the UK:
    Give Blood

    in reply to: My confirmed triggers #14805
    KeithTaylor
    Participant

    This discussion, especially with regard to the original post, is a fine example of the confusion caused when we try to label certain foods as triggers of gout attacks.

    It might be statistically possible to associate a given food with a gout attack. But that can be dangerously misleading.

    There is only actually one gout trigger. It is the immune system response to uric acid crystals when overwhelmed white blood cells signal for reinforcements. That process triggers the intense painful inflammation that we call an acute gout attack.

    As I wrote today, in dangers of gout triggers, it all depends on the context of the attack. Is uric acid rising or falling? Is the immune system healthy or compromised? Without that information, assigning the label of gout trigger can be very misleading.

    in reply to: How I cured my gout without drugs… #14772
    KeithTaylor
    Participant

    I like the idea of vitamin C as a regulator, encouraging iron uptake when it is needed, and encouraging iron excretion where there is an excess. Unfortunately, the person claiming that does not give any references, so I’m not sure how much truth there is in that statement. The next person in the FAQ gives a link to a document that cannot be read.

    I much prefer to see science from places like PubMed, where investigations and claims are reviewed publicly by other scientists.

    I’ve tried to understand iron, but I’ve not yet managed to get my head round it. I agree with you that donating blood seems the simplest solution for gout caused by excess iron. I can’t find anything useful on reducing iron through diet, so if anyone can help with this, please point me in the right direction.

    As for vitamin C and gout, we know that vitamin C reduces uric acid. The higher the starting level, the better the result, but it is still not clear what the daily dose should be.

    in reply to: What should I do to reduce my uric acid level permanently? #14769
    KeithTaylor
    Participant

    Gout is not a disease that starts and stops. Once you get it, you have it for life, except for rare cases of secondary gout.

    For most of us, the high uric acid that causes gout is a permanent result of genetic and other factors. Bad diet can make it worse, but healthy eating is rarely enough to control uric acid. Your first doctor found the answer – allopurinol.

    Allopurinol is usually taken for life. Once you stop taking it, within two weeks, uric acid returns to a high level.

    From looking at your diet, your purine intake is already very low, and further restrictions will not make much difference. More vitamin C and skim milk might make a slight difference, but I do not think they will get your uric acid down to 5 or lower.

    My best advice is to get back on allopurinol. This time, adjust the dose until you reach 5 or lower.

    To answer your list of questions:
    Will this disease go with me for whole life? Yes

    Is there any cure? No

    If body generates uric acid more than food so what body exercise should I do? Regular, gentle, exercise is best, such as walking or swimming. Avoid anything that stresses the joints. Avoid dehydration.

    From where can I have a full diet chart of low purine? Purines for gout sufferers

    in reply to: Need help with treatment plan #14757
    KeithTaylor
    Participant

    Welcome @newstart. A nice, interesting start to my day.

    You have made a great start to your gout treatment plan by getting on allopurinol. To make this better, you need to keep thinking forward.

    First, have you discussed a target uric acid level with your doctor? I notice you are aiming below 5 mg/dL. This is good, but for best effect, you need your doctor to agree. The best gout treatment plans are when doctor and patient are working towards the same goals. This is something that you can clarify at your next visit, which brings me to..

    Do you have a forward plan for blood tests? Allopurinol must be monitored. It is best to start with tests every 4 weeks. Once results are stable, you can gradually extend the frequency, but never less than one test per year. Uric acid tests should always be accompanied by kidney function and liver function tests.

    Finally, I find it useful to keep a track of gout attacks. I wish I had done this here in the forums so I had a permanent record. I have now gone over a year without an attack, so I’m satisfied I have gout under control. To gout patients who have not yet reached this happy state, I recommend keeping a diary of gout attacks, with dates and joints affected. This lets you check to see when you have gone six months without a gout attack – a milestone when you can celebrate getting gout under control.

    When I finally launch my gout treatment planning service, I will include the facility to keep progress records. For now, it is easy to just keep a record here. This does two important things:

    1. You can see your progress, and refer back to it. This helps if progress gets tough, and also helps you plan what to do next.
    2. It lets other gout sufferers see that there is a way forward. They can use the best of what you have done, and are encouraged to seek their own Swiftest Rocket.

    in reply to: Do I have gout? #14754
    KeithTaylor
    Participant

    Also, I’ve just been chatting with @Devin about the effects of temperature on uric acid crystallization (https://gout-pal.com/gout-pal-forum/please-help-my-gout/need-help/#post-14753). Are your hands frequently exposed to cold? If so, gout can occur as low as 4 mg/dL.

    KeithTaylor
    Participant

    @Tensia I assume you are referring to Pure Via. This is one of many brands that use extracts from the stevia herb. Purists might argue that the stevia herb is better than extracts from it, but that would depend on the context of their claims.

    The context of this stevia discussion is gout, and there are two aspects to this discussion.

    Gout sufferers interested in stevia are likely to be seeking to lose weight. Excess calorie intake is bad for gout, therefore, as noted by @zip2play, stevia may help gout indirectly, if it helps overweight gout sufferers lose weight. Obviously this applies to all products that help weight loss, but we must also consider specific properties of those products. The specific properties that gout sufferers are interested in is the effect, if any, on uric acid, and on inflammation.

    There is very little meaningful research in this area, and I have so far found only one relevant investigation. I thought I had found a second relevant gout study, but although A double-blind placebo-controlled study of the effectiveness and tolerability of oral stevioside in human hypertension mentions that uric acid tests are included in its methods, confusingly, it does not give any results. This leads me to believe that the effects are not significant.

    The confusion continues in the one relevant report that I have found. Immune up regulatory response of a non-caloric natural sweetener, stevioside contains the claim:

    Leaves of Stevia rebaudiana are a source of several sweet glycosides of steviol. The major glycoside, stevioside, diterpenoid glycoside–is used in oriental countries as a food sweetener. Its medical use is also reported as a heart tonic. Besides, it is used against obesity, hypertension, and stomach burn and to lower uric acid levels.

    Well, I’ve searched extensively for any connection between stevia and uric acid, and I can find nothing. If anyone has access to the full version of this study, please check for me to see if the uric acid lowering claims are justified in the full report. [edited: see new research comments below]

    My main interest in this gout study is related to the other relevant property – inflammation. This report suggests that stevia stimulates the phagocytic function. That is the aspect of our immune system that leads to inflammation and gout pain. As white blood cells attack uric acid crystals, the phagocytic function causes white blood cells to grow and divide. This causes inflammation and pain, and it is this process that colchicine inhibits.

    A healthy immune system should be good for general health. But there are other issues if you have uncontrolled gout. If you have got uric acid safe at 5 mg/dL or below, and you have maintained this for over six months without a gout flare, then you are free from the risk of gout flares, so the stevia-inflammation issue is less relevant. In any event, you should include stevia consumption when you discuss your gout treatment plan with your doctor.

    in reply to: Please I need help for my husbands gout! #14739
    KeithTaylor
    Participant

    Sorry for the delay, Cyndi. I’ve now moved home, but still many boxes to unpack.

    First, I need to clarify what gout is. Most people think of the painful episodes, and most doctors only get involved when their patients are suffering acute gout attacks. However, gout is an ongoing, progressive disease. This means that, even if gout pain has gone, gout is still there. The uric acid crystals that cause gout attacks are still growing inside Jerry. He needs to get rid of the uric acid crystals. The only way to do this is to get uric acid to 5 mg/dL or below. Failure to get uric acid under control will lead to gout getting worse, so we have to find ways to control uric acid.

    5mg/dl is the target for allopurinol, and other uric acid lowering drugs, but it is also the target for natural methods. You cannot control gout without knowing uric acid levels, so please contact the clinic and ask them to write down the results and dates for all the tests that they have records for – the more information, the easier it is to get a plan.

    You and Jerry can decide whether to go for pharmaceuticals or natural remedies, or a combination. It does not really matter, except that pharmaceuticals are easier to manage. If Jerry’s eating habits are bad, then he might fall into the small group who can control gout with diet and lifestyle changes. Even if you decide to use allopurinol, lifestyle improvements can help with reducing heart attack and stroke risks.

    Whether pharmaceutical or natural, there are two separate things to consider. One is lowering uric acid, and the other is pain control.

    Colcrys (colchicine) is for pain control. There are many cheaper alternatives, and it often needs to be combined with anti-inflammatories for best effect (ibuprofen, or naproxen, or Indocin, etc). Colcrys is available free or at reduced cost to those that qualify, and I strongly recommend you search needymeds.org for Colcrys (they have lots of other assistance programs for all aspects of health care).

    There are some natural products that help reduce inflammation and pain, but I do not know of anything that will cope with a gout attack. People talk of cherry juice or black bean broth, and they may work for some people, especially at the first twinge of a gout attack. Once a gout flare has got hold, I believe only pain meds, or high pain toleration works, but I’m always willing to listen to people who have found things that work for them. The most important thing to realize is that you only need pain control whilst you have uric acid crystals in your body.

    If you get rid of the crystals, you get rid of the pain. It takes a few months to get rid of uric acid crystals with allopurinol at the right dose, but it will usually take much longer with natural methods. The best way is often to start with allopurinol, then try to improve lifestyle so you can reduce allopurinol dose in future.

    There are some natural products that will lower uric acid, but without those test results, I cannot advise how to use them properly.

    If funds are tight, the last thing I would spend money on is a home uric acid test kit. I can get blood tests at my doctor every month without charge if I need to. Monthly tests are good at first, but every two or three months is still acceptable in most situations. I’m assuming your VA clinic tests are free?

    I think the best thing to do now is to gather information and then we can work out a plan. See if you can get old test results. If not, see if you can get results in future, and arrange another test. Please tell me more about the costs involved with uric acid tests at the VA clinic (I’ve tried to Google it, but I just get this discussion, or links to it! :shock:).

    Checkout the NeedyMeds website to see if you can get help for Colcrys – if not, we can develop a pain control plan that does not need Colcrys.

    Let me know how Jerry feels about pharmaceutical versus natural so I can put a better personal emphasis on a plan that suits him.

    in reply to: Cancelled update #14735
    KeithTaylor
    Participant

    Interesting, and more interesting.

    I wish I had time now to respond more fully to all the points. Safe to say, all three of the people who have been kind enough to respond here have inspired me to new heights. This is in wonderful contrast to my personal lows of the past two years.

    Time constraints are down to me moving home. At last I’m getting away from near-death flat. The new chapter in my life is bound to influence new chapters for GoutPal. I’ll save my rant at the bastard landlords for another day.

    Am I really coming out of it, or just fooling myself? Is another unforeseen psychological minefield just round the corner? Who knows! Stay tuned via the over-commercialized update service for the next thrilling story of the fall and rise of GoutPal.

    Quick responses to your comments so far:

    @Bhart
    I’m confused whether the issue is the website or the update service. This website uses the same basic layout as GoutPal.com. I’m desperate to keep you onboard, so please spell out to this thick person what I need to do to keep you.


    @hansinnm
    Thank you for testing my adverts. Are you going to tell me which one caused the problem, or is my punishment going to be that I have to test them all? This might be difficult for me, as the ads are geographically targeted. I cannot see what you see unless I test it from the States. If you can’t tell me the troublesome link, I guess I should visit to see what the real problem is. Do you have a spare kennel for this old dog to stay?


    @Tavery
    Thank you from the bottom of my heart. Reason and clarity personified. I’m inspired to redouble my efforts into non-pharmaceutical options for that significant group of gout sufferers who might benefit. Crowdsourcing is a new trend for alternative ways to solve many problems. I do not see why it cannot apply to natural gout remedies. I think I can see a way to make the personal gout management services that I am building provide exactly the type of trend information you refer to. Happy days ahead.

    To the three who have joined in so far – a massive thank you.

    To the thousands who are lurking – please post your experiences, opinions, or questions in an existing topic, or start a new one. You will be surprised how quickly your gout gets better when you talk about it on a personal basis rather than following other people’s gout stories.

    I promise to address the root issues raised in this discussion in more detail, soon. In the meantime – please get posting.

    in reply to: Cancelled update #14725
    KeithTaylor
    Participant

    Interesting.

    I’ll address the last paragraph first, and say that GoutPal is, and will always be, an important gout resource. Where else can you get free unbiased (without the question mark) advice from someone who truly cares that you control your gout?

    I am currently going through all advertising and paid links to make sure they are clearly marked as advertising, and not just links within content. I’d love to see a few practical examples that demonstrate “I think it would be to your benefit to keep the ads out of the content on the website and placed away from the articles. Many of the sponsored medical websites do a good job of separating the information from the sales pitch ? you should follow that model. ”

    I think my model is less intrusive than that of, for example, WebMD, but what do other people think? I accept that I can always improve, but I’d appreciate an insight into those websites that you feel are worth emulating.

    Ultimately, I’d like to remove all advertising from the main website, except for some clearly marked links to my Gout Store. That will depend on the success of the Gout Store. Early indications are good, but progress slow, and unlikely to be a candidate this year.

    One possibility is to introduce a paid-access service that removes advertising for participants. Would anyone pay for an advert-free GoutPal site? If so, how much? Similarly, who would like to see an advert-free update email service?

    in reply to: Should I Increase My Allopurinol Dosage? #14718
    KeithTaylor
    Participant

    Your first paragraph is heartwarming, and exactly why I do this, so thank you for your support and encouragement.

    My overall assessment is that you are probably getting better treatment than most, but it could be better. For a long time, 6 was regarded as the best target, but research over the last decade has made it quite clear that 5 is preferable. The reason is all to do with safety margins. Uric acid levels fluctuate naturally. Another significant factor is temperature. One day I will have to find a chart that tells me uric acid crystallization point at different temperatures. For now, I accept that uric acid is less soluble at lower temperatures. Joints in the limbs are often exposed to lower temperatures. I like to be safe, and accept professional recommendations to aim for 5. More importantly, I want to get rid of old uric acid as fast as I can, so I am aiming for less than 3 for now.

    I’m lucky to belong to a group practice where I can make appointments with different doctors. The 4th one agreed with me.

    5.8 ought to be safe, but if you want to go lower I believe the choice should be yours.

    Though I have no data to support it, there is some logic that supports the notion that uric acid level may fall. Some of that number is made up of old crystals dissolving, so as that value shrinks, the concentration that is measured in a blood test should fall. I do not know how significant that drop will be, if any.

    I’m happy that your uric acid test results are in the safe zone, and your other blood work is good. I guess it boils down to how aggressive you want to be. Maybe you could ask for another test in two months, just to make sure everything is going OK.

    in reply to: Do I have gout? #14713
    KeithTaylor
    Participant

    Gout occurs when uric acid crystals grow inside the body. The gout pain normally starts in joints, when white blood cells (part of our immune system) attack the crystals causing painful inflammation. It is common for uric acid to fall during an attack, so you need to organize monthly uric acid checks to get a better picture over 3 to 6 months.

    Tophi occur when uric acid crystals form in soft tissues, usually under the skin, but all organs are at risk, especially the kidneys and heart. Some people get tophi without getting acute gout flares, but this is rare.

    Tests for uric acid crystals are best performed by a rheumatologist. As I mention in my I Have Gout program, if a rheumatologist needs to involve other specialists, he will do so, but suspicion of gout should always be referred to a rheumatologist first. If the tests reveal internal crystals causing your gout-like symptoms, they will also reveal if these are uric acid, indicating gout, or other health problems, including pseudogout.

    in reply to: Should I Increase My Allopurinol Dosage? #14708
    KeithTaylor
    Participant

    Welcome @goutbgone,

    First, on diet, I respect your view that diet alone will not make you safe if uric acid levels are over 10. Even at 8, it can be a struggle, though it depends on how bad your eating habits are to start with. I’m glad you’ve gone to allopurinol, and I would urge anyone else to do the same if uric acid is above 7.

    I like your attitude to uric acid control. Strictly speaking, there is an important stage missing. Prior to starting allopurinol, you and your doctor should have agreed a target uric acid level. Professional rheumatologists are crying out for the medical profession to “treat to target” for gout.

    The standard target, as directed by the American College of Rheumatology in 2012 is 5 mg/dL. They allow that this might have to be relaxed to 6 if there is kidney disease or other medical reasons why 5 is not achievable. This is a clear directive, also recognized in other countries. For anyone who has gout, the target is 5, with 6 allowed for complications. “Normal” is a statistical nonsense – as irrelevant as the statistic that half the population have a normal range of 0.8 to 1.2 breasts.

    There is a refinement to the lifetime target which is not spelled out in the directives, but hinted at in the background notes. It is made very clear by various studies. This has to do with the first few months of uric acid lowering treatment. Gout is a progressive disease, so all the time you have had it, uric acid crystals have been building up in your joints and soft tissues. These will dissolve faster if you get uric acid lower. As I had visible tophi at the time of my allopurinol initiation, I persuaded my doctor to go for maximum allopurinol for six months. This got me down to around 2, which is good, as my target was anywhere below 3. We later extended this for another year. I totally believe in this aggressive approach to uric acid lowering treatment, but the choice is yours.

    The important thing is to agree a target at your next appointment. Forget dosing – that is just a process that gets to your target. There has been a belief that 300 mg allopurinol is a standard dose, but this is outmoded. If your doctor signs prescriptions with a quill, you might have problems persuading him of modern best practice But, if you arm yourself with the facts, and be clear about what you want to achieve, no tight-minded doctor is going to ignore a patient who is serious about his health.

    The only way I would agree with a decision to ignore the prescribed dose is as a temporary plan if you are moving to a new doctor and don’t have immediate access to a prescription upgrade. It is never wise to break the doctor-patient trust. I believe in working to strengthen that trust, and your trust will be lost as soon as you need a repeat prescription.

    Two other points:
    1. You mention a flare. These are likely whilst uric acid crystals remain in your body. My aggressive approach shortens the length of time you are exposed. Whichever target you decide, you should consider preventative daily colchicine for a few weeks / months, and have anti-inflammatories on hand to take at the first sign of an attack.
    2. As we have touched on uric acid testing, I must add my usual recommendation about blood tests. Gout patients on (or considering) allopurinol or Uloric should always get liver function and kidney function tests whenever they have a uric acid blood test. Uric acid should be tested at least once a year, with frequency increased up to once a month where results are unstable, or medications are changed.

    Good luck @goutbgone. Please let us know how you get on.

    in reply to: With gouty knees I can’t straighten either leg #14704
    KeithTaylor
    Participant

    Hi Dan,

    Short answer: yes, gout can impede joint movement, but should you not be checking with a rheumatologist?

    More explanation:

    Gout is caused by uric acid crystals that start growing in the joints, but eventually spread throughout the body. They grow slowly, and may not cause a painful gout flare for many years.

    Typical gout pain is caused by inflammation, and the swelling often makes it difficult to move joints. This is a temporary effect, which should pass when the swelling reduces naturally or with anti-inflammatory treatment. However, there is a second effect.

    Before I explain the second effect, I should also point out that there may be other problems that co-exist with gout. For that reason, I recommend examination by a rheumatologist. It is impossible to diagnose symptoms online, so my advice is to get examined. If you do not understand the process or results of that examination, please come back for more clarification.

    The second joint effect is more serious. When uric acid crystals grow around joints, they often grow into ligaments, tendons, cartilage, and bone. After a few years, joints are damaged to some degree, and this can cause permanent joint restriction.

    If you do see an orthopedic consultant, please be sure to describe exactly how the restriction ties in with gout attacks. I.e. does restriction occur all the time, or is it only during acute gout flares. Be sure to question how any proposed treatment might impact on your gout. If exercise is recommended, I would seriously suggest that you discuss rigorous uric acid lowering first to try to dissolve some of the crystals that may be embedded in your joints.

    in reply to: gout will not go #14701
    KeithTaylor
    Participant

    Hi Hans. I’ve missed you.

    I know exactly where the MSM comments are. There is a search box near the top of every page, here and on GoutPal.com. If you enter MSM into that box, it directs you to the thread you refer to: https://gout-pal.com/long-term-effects/2012/11/

    Am I getting old? Well, it depends whose standards you are judging by. Safe to say, having recently passed the 55 landmark, I now qualify for sheltered housing. Ramped access for my bathchair – how jolly.

    Anyway, you are right – I am getting forgetful, so the search box is my savior. I didn’t bother with it in this context, as I was anxious to learn why @oscar68 thought it might be useful.

    Forgetfulness is not only due to advancing years. I’ve finally got a diagnosis of the psychological problems I’ve suffered since my accident in April 2011. Apparently, it’s called Adjustment Disorder, so I thought I’d tell my family. One sister got the wrong impression – she thought I was “adjusting myself” also known in these parts as “fiddling wi’ me bits.” I can assure you I was not 😉 🙂

    in reply to: gout will not go #14698
    KeithTaylor
    Participant

    I don’t know what MSM is. Who told you that it might help repair gout damage? I’ve never heard of MSM in context of gout, but I’ll have a look into it.

    The real problem is that your uric acid is not low enough.

    The maximum safe level is 300 μmol/L, though 360 might be the best acceptable top limit – you would need to speak to your doctor about this, or ask for more help here if you have kidney problems or other health issues that stop you getting uric acid down to 300.

    The “large burstle” sounds like a gouty tophi. To reduce it, you should discuss several months at a lower uric acid limit. Personally, I recommend the maximum allopurinol dose for at least six months to shrink the tophi as fast as possible. This also reduces the time you are at risk from gout flares.

    In modern times, there is no reason why gout should stop anyone working, but you have to have a good pain management package. This is something you need to work out with your doctor. The best approach is a 3-line attack, but your personal circumstances will determine what is best for you.

    I recommend one colchicine every day for the first few months of allopurinol treatment. If you get a twinge, take a second colchicine after one hour, but never more than two per day.

    Second line is your diclofenac, or other anti-inflammatory. Take as advised by your doctor.

    Third line is a painkiler that is compatible with your chosen ant-inflammatory. In most cases it is not necessary, but I have yet to see a gout attack that will not be overcome by this combination approach.

    I hope this helps, @oscar68. If not, please ask for clarification. Also please tell me what you’ve heard about MSM – I’m intrigued.

    KeithTaylor
    Participant

    Hi Jenny,

    As a first step, I strongly recommend that you look at needymeds.org

    They have a massive range of help programs for getting cheap or free diagnosis, and the medications to treat them.

    Indocin will help ease the pain, but if you actually do have gout, then you have to get uric acid down to 5 mg/dL. Some people with mild gout can achieve this with diet improvements, cherries, and other supplements, but you still need to monitor uric acid level.

    Many people (including some medical people) do not understand that gout can attack when you lower uric acid, just as much as when your uric acid rises above 7 (or 6 when joints are at lower temperatures). If you do not monitor uric acid levels, diet changes are just a lottery.

    I’m glad you are getting a test kit, but please be careful how you use it. It takes time to get used to, and you have to be methodical. Test the same time each day, and follow the exact same test procedure. Double check that the amount of blood you test matches the instructions. Home test kits are usually very accurate, but they rely on the correct amount of blood.

    I hope you can get some professional help soon using the NeedyMeds website. If you want any help using the uric acid test kit, please come back to the forum.

    Prior to getting a proper gout diagnosis, many pharmacists can give advice on pain relief. Quite often, a combination of more than one pain medication works best. Anti-inflammatories like Indocin are good for gout, but people have different reactions to them. Some people tolerate ibuprofen or naproxen better than Indocin. They should never be mixed, but other pain relief can support them. You must get professional help to get a safe combination. Most pharmacists will help with this.

    Good luck, Jenny. Please keep coming back for any further help, or just to report your progress.

    in reply to: Prolonged Frequent Gout Attacks #14685
    KeithTaylor
    Participant

    Hi Jay,

    Your uric acid test results are almost certainly mg/dL, and the safe level is 5. If you have any trouble convincing a physician, ask them to check the 2012 gout management guidelines from the American College of Rheumatology. In some circumstances, 6 is allowed, but that is usually where there are complicating factors such as kidney disease.

    7 is too high to get rid of old crystals. I actually believe it is worse than doing nothing. At 7, you are in danger of constant dissolving and reforming of uric acid crystals. Our immune system attacks uric acid crystals whenever it can “see” them, and this happens as they are forming, and as they are dissolving.

    I do not recommend doing nothing, as untreated uric acid crystals will continue to spread throughout your body. In joints, they stop new tissue growing to repair bones and ligaments, eventually causing joints to crumble (osteoarthritis). In soft tissues, they cause permanent damage to skin, kidneys, heart, and eventually spread to all organs.

    The fastest way to get rid of old crystals is to take maximum dose of allopurinol for six months, then review. If all is well, gradually relax the dose until uric acid levels reaches 5, or slightly below. Otherwise, continue maximum allopurinol until you are free from gout attacks (without pain meds) for 6 months.

    I am currently taking 900 mg per day (UK maximum), but the USA maximum dose is 800 mg. That should be enough to get you gout free in a few weeks, but you should arrange monthly blood tests for uric acid, kidney function, and liver function. Once stable, relax the test frequency, but never less than once per year.

    I share your concerns about prolonged use of NSAIDs. I used to take ibuprofen, but Indocin, and all NSAIDs such as naproxen, carry the same warnings. Early on in my treatment, I took one colchicine per day, with a second one if I felt an attack coming on. If necessary, I added ibuprofen. I found this to be the most effective way to stop, or relieve gout pain, but after a couple of months on maximum allopurinol, I never needed any pain relief.

    I hope this helps. If not, please ask me for any clarification you need.

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