Keith’s GoutPal Story 2020 Forums Please Help My Gout! Do I really have gout? Not sure I believe the Doctor

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  • #18773
    Keith Taylor
    Keymaster

    Good point – @kipper – where are you? Hope all is well.

    Mark, the thing we all worry about most is the next gout attack. Though this is extremely painful, and to be avoided at all costs, medically, it is not particularly serious. Psychologically the pain, and worry about more pain can be devastating. However, it is temporary, and not life-threatening.

    The real problems go unseen until it is too late. Uric acid crystals around joints prevent cartilage, tendon, and bone from repairing themselves. This process happens every day that uric acid crystals are present, whether you notice their presence or not. Some of the resulting damage will recover if uric acid is lowered sufficiently, and old uric acid deposits dissolve. However, the longer this is left, the less chance of repair, and greater chance of joint replacement or amputation.

    Uric acid crystals will eventually spread to all joints and beyond. When they collect in soft tissues, they form lumps called tophi. These are most noticeable in the skin. They might look ugly, but usually don’t cause too many problems. However, they might restrict mobility, or burst through the skin risking painful infection. Tophi will eventually spread to all organs. There is a real danger of kidney disease, heart disease, and other organ damage. You can see more details at http://www.goutpal.com/gout-symptoms/tophi/

    All of that leads me to advise you that option 1 and 2 will not work. By the way, slightly lowering uric acid doesn’t always reduce gout attack risk. It is one factor, but whenever you have uric acid crystals present, you can get an attack. Attacks be triggered by trauma, illness, saturated fats, or anything that causes old crystals to start dissolving or new ones to form. 0.3 is a target that gives a margin of safety. 0.36 is the absolute upper limit.

    The great thing about allopurinol is that it has been used to treat gout safely for many decades. There are scare stories, but they do not apply if the correct procedures are followed.

    First, high risk groups can be screened for sensitivity risks before allopurinol starts. These are Han Chinese, Thai, and Korean with Chronic Kidney Disease.

    Second, dose should be started at 100mg per day.

    Third, kidney function and liver function tests should be taken with uric acid test whenever there is a dose increase. Testing should be done at least once per year for life.

    The psychological implications of daily allopurinol for life are harder to resolve. Personally, I wear glasses every day, and have done since I was a boy. I was very reluctant to do this at first, but only made my own life miserable by not being able to see properly. I also waited longer than I should have before starting allopurinol. But I am so glad I did. It removes an enormous worry when you know you are doing the best you can to protect your body moving through middle-age (I’m 56). I get a real sense of achievement when I hear friends and acquaintances moan about their gout. I know that mine is controlled, and I do not need to worry.

    Finally, Mark, I hope I can persuade you not to worry about taking allopurinol. Many of the so-called side effects that get brought up on this forum are the same as the effects of anxiety. I’m convinced that people worry so much about allopurinol that they make themselves ill. If you are unfortunate enough to be one of the few who definitely cannot tolerate allopurinol, then there are alternatives. Febuxostat is the obvious choice, and more are in development.

    I hope this helps you decide. If there are any of my points that are not clear, or that you disagree with, please let me know. I hope I can help you get gout under control, but I want you to feel comfortable with whatever you decide. If you want to pursue lifestyle improvements then let’s have a serious discussion about all the things you might do. Personally, I tried it and found life more tedious than a hedonist like me can bear, but it might suit you.

    #18774
    Keith Taylor
    Keymaster

    Just realised that I didn’t explain “I had thought gout was more short sharp attacks, which can occasionally last longer rather than this constant low level swelling and mild pain?”

    Gout attacks, medically: acute gout, are caused when your immune system gets overwhelmed. If there are only a few visible uric acid crystals, your immune system engulfs them, and you feel very little. Once overwhelmed, they secrete chemicals that attract more white blood cells, and promote cells to divide rapidly providing more defenders. All of this produces redness, fever, swelling, and pain. Apologies to any human biologists for the simplistic view.

    Between those two experiences, there is a whole range of pain levels. Sometimes it’s just a little numbness or pins and needles. Other times it’s full blown agony. Mostly, it’s somewhere in between. These are all symptoms of the war between your immune system and varying numbers of free uric acid crystals.

    #20585
    kipper
    Participant

    Hi Mark, Keith

    Just a bit of an up date.

    I received my uric acid level results today, down to 5.0. I would have thought my result may have been lower as I have been on 100m/g per day of allopurinol for 4-5 months now.

    I am not sure about this result, maybe the dose needs to go up? I will test again in about 3 months and see how we go. The liver and kidney? function test came back as good though.

    Monday of last week I thought an attack was coming on as late in the afternoon out of now where I had the familiar stiffness / tightness feeling in my left big toe start. As soon as I could I started on my colgout tablets and it seemed to do the trick as when I woke next morning the feeling had gone. Nothing since then, but prompted me to go and have another blood test.

    How are you getting on Mark? Has everything settled down?

    Regards
    Kipper

    #20590
    Keith Taylor
    Keymaster

    Kipper, you seem to be doing everything right. It’s good to know you are safe at 5, and especially good that you are going to keep an eye on your uric acid and get tested again. I wish all gout sufferers would follow your example and get uric acid tests at least once a year, with liver and kidney function tests of course.

    I hope my recent website changes haven’t confused you. To log in now, click the link at the left of the black menubar at the top of the screen. Once you’re logged in, the menus change, with many member options on the right, where your name appears.

    #20616
    Unknown
    Participant

    Hi Kipper,

    Glad to hear that you are doing well and that you’re having no problems with the Allopurinol. Are you playing sport at the moment and do you think that it is helping to prevent any attacks that you might have thought would have happened had you not been taking it? I notice that your level of 5.0 is not actually lower than some of the previous readings you were getting before.

    I’m afraid to say that I have mostly taken Option 1 from my earlier post and done not a great deal about things. I have not had another attack since the last one finally wore off back in December, but then I have not really done a great deal of sport or anything likely to injure my toe either (mostly deliberately) up until last week when I played both squash and hockey. Other than the usual stresses and strains of the match, I did nothing to think I might have injured anything and although my toe has been stiffer and certainly a bit more swollen, it hasn’t turned into anything.

    I have cut out beer during the week (I used to have one beer every night) and now have at least two days a week totally alcohol free. I’ve also bought a standing desk and a foot warmer to promote circulation in my feet (which I do think is a prime cause of my troubles). I think my toe is just worn and damaged from all of the sport I have played in the past and the lack of circulation means it heals slower and less completely each time, as well as retaining fluid while it does so.

    I am still reluctant to take Allopurinol because, despite the blood test results and all the other evidence, I’m still not 100% convinced that this is gout (I’m aware this is me being a bit of an Ostrich about things and that I’m struggling to think of anything else that might cause such disproportionate pain compared to the initial injury). If I am to take something, I want to be certain that I’m doing so because it’s totally necessary, especially when the attacks happen so infrequently and with a trigger (injury) that I can more or less control (for the most part). If they were more frequent, or if I had at least one that came from nowhere then I’m sure my attitude would change. Also, I dislike taking anything, even painkillers, unless I really have to.

    My intention now is to wait and see what happens and, should another attack strike, this time insist on the needle in the joint to check for crystals. If that were to come back positive then even I wouldn’t be able to deny things any longer and I would start taking the Allopurinol. Until then though, I’m hoping that not stressing things and a bit of positivle lifestyle changes will keep me, literally, on my feet.

    Cheers,
    Mark

    • This reply was modified 6 years, 8 months ago by Unknown.
    #20627
    Keith Taylor
    Keymaster

    Hey, Mark, thanks for the inspiration:

    Are You a Gouty Ostrich?

    Please don’t take it personally, I’m aiming for the group, not an individual.

    On an individual basis, I’m puzzled. You seem to know more about gout than most people, so I’m pretty certain that you know the dangers of uric acid at 0.47mmol/L. You hint quite strongly that your ostrich approach is probably not your best option. I hope I can find a way to convince you not to take your ‘do nothing’ option. Allopurinol is a pretty easy option, apart from the psychology. We can talk about that.
    Lifestyle changes need more attention to detail, but you might enjoy the challenge of doing that.

    I’m worried that you’re putting so much store by the joint fluid test. It is the best mainstream test we have, but not 100% certain. Unless you can get access to a DECT test, you can’t have certainty. Without that certainty, you have to do what doctors do every day – balance the risks. You can’t see those risks with your head in the sand.

    If it helps, let’s take any current discomfort out of the equation.

    You have uric acid at 0.47 compared to the safe level of 0.30. As far as I know, you have no other health conditions that mean you have to settle for 0.36. You are over 50% higher than the safe limit. You have a very strong risk of permanent joint damage. Time period is hard to judge. Let’s say creaky joints in 10 years, mobility restrictions and osteoarthritic pain in 20 years, and amputation in 30 years. There are other long term risks outside of joints, but I’ll leave the organ damage risks for another day.

    Balanced against that risk is barriers to lowering uric acid. You should list all the barriers that you can see. We can then discuss if it is a real barrier (psychological resistance to daily medication) or an assumed one (my problem is not gout-related). Is it choice of treatment that’s an issue? We can discuss options between pharmaceutical, herbal, and non-medicine alternatives. Is it cost of treatment? Let’s find a way to break that barrier.

    All I ask, Mark, is look above the sand. See the risks. See the barriers. Make a plan, and balance the risks. I’d highly recommend completing your Personal Gout Profile, then for each issue you have, start a new topic. Don’t try to fix every issue in one conversation – it just get’s too woolly. That’s why I push focus onto your gout facts. Your profile gives a structure that we can use to move forward in a positive way. This long rambling thread is masking the real issue – doing nothing is not an option.

    #20628

    I’ve take the Gouty Ostrich debate to Facebook: https://www.facebook.com/GoutPal/posts/10152720753560785:0

    Twitter: https://twitter.com/GoutPal/status/583173596811497472

    Google+
    https://plus.google.com/u/0/+Goutpal/posts/GQjbv4UG9vg

    As a reformed (almost) ostrich, I can probably think of more reasons to hide my head and do nothing than most people can. Let’s have some reasons why it’s wrong to do nothing. Are there any more people out there who’ve conquered their gout, but wish they’d done it sooner? Please help the Gouty Ostriches start fixing their gout today.

    Join the debate wherever you like:
    Facebook

    The gouty ostrich hides his head. Ignoring high uric acid and ever increasing painful joints. When will you stop joint…

    Posted by GoutPal on Tuesday, 31 March 2015

    Twitter

    Google+

    But best just to reply here in this forum.

    #20634
    kipper
    Participant

    Hi Mark, Keith

    I could not remember my original password and my email account is playing up at the moment so cannot retrieve my temp password either.

    Mark, I am unsure why I have not had any attacks for awhile now most likley because of the Allopurinol I suppose. Until last Monday I had not even had a twinge out of my toe. It has not been a problem since though, as I took some colgout tablets within about an hour of feeling the tightness and woke up nextmorning all good.

    I have since the start of Febuary got back into crossfit, and looking after my diet abit better after a hernia operation back in December. I put on quite a few kilos! After reading some info on this site I think my red meat consumption maybe way to high, this maybe where the twinge in my toe came from? I may need to change this around abit. My drinking has decreased a fair bit as well, probably average 4-5 beers a week, some weeks none at all.

    I think you are going through some of what I went through, trying to convince yourself it is not gout because there seems to always be some other reason for the pain to start. Every time I have had an attack I couldin my mind always point to some other reason why I thought it was not gout. Both times in my ankles it was because I had had some physio work done on them and this was the problem. But the pain was all out of proportion to the slight injury I had with them. In my left toe I always thought it was because I had stubbed it or knocked it, again the pain was all out of proportion to the injury as well as the time out of action. Remember gout can and does come on after injury or trauma for some people.

    I twas not until the blood test at 5.6, that I could say with some certainty that it was gout. I was at this stage sick of the pain and discomfort gout attacks caused me, also as I am allergic to NSAIDs, I had to just take pain killers and wait the attacks out. I had also had Xrays, MRIs, and lots of different blood tests all negative, except for the above 5.6 reading.

    In my case I was just sick of the attacks when they came as they got in the rode of life, sport, fishing and family. I was not looking foward to the thought of a tablet every day, but so far the allopurinol has not shown any down side. I will continue with the liver and kidney function tests for the next 12 months then if I show no signs of problems, drop it back to once a year.

    Anyway hope this helps some in coming to a decision about doing something, as doing nothing will not help prevent another attack. Doing something may stop it!

    Regards
    Kipper.

    #20659

    Kipper, you said:

    I could not remember my original password and my email account is playing up at the moment so cannot retrieve my temp password either.

    I’ve assigned your two recent posts to your account.

    I can send you a new password but, of course, I don’t know where to send it to. Or, I can change the email address on your account. If you do not have an alternative email address, I highly recommend gmail.com – that also enables one click login here by simply clicking the Google icon near top right.

    Please do not post an email address in this public forum. Instead, click the orange Support button, or raise a ticket direct in my Gout Support helpdesk.

    On your gout comments to Mark – WOW! Very helpful indeed. Thanks Kipper

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