Keith’s GoutPal Story 2020 Forums Please Help My Gout! Ready for Allopurinol Guidance

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  • #19768
    Luke Haymond
    Participant

    Keith –
    I am about to embark on my Gout banishment. I am going to contact my Doctor to begin Allopurinol. My plan is to request 100mg daily dosing, but would like your recommendation for a schedule for blood analysis. My last blood analysis on Jan 7 showed UA level of 7.2

    Also, shoulld I continue colchcine and simply keep indomethacine at the ready or suspend colchicine until signs of flare?

    A quick response would be most appreciated – I want to get on with this!

    Best,

    Luke

    #19769
    Luke Haymond
    Participant

    OOOps – I think I found my answer…. so in the interest of preserving your time does this sound correct:

    100mg daily for two weeks – test
    200mg daily for two weeks – test
    300mg daily for two weeks – test

    holding with whatever dosage gets me to less than 5 UA reading. Comtinue for one year with a test every 6 months to confirm less than 5 UA maintenance

    Report back for guidance.

    Good?

    #19803
    Keith Taylor
    Keymaster

    First off, Luke, I’m really sorry for not responding earlier. I’m having a busy week, but that is no excuse. I’ve had my focus in the wrong place. I get a notification when new members post their first message. As you know, this goes into a moderation queue, so I get a big red warning. I have now changed my daily routine to look for existing members posts first.

    I hope my delay doesn’t put you off posting more messages. I’m convinced that regular posting, to your own, and other people’s threads, makes a positive contribution to fast gout recovery.

    I think you are in a perfect position to successfully control your gout. It’s good to have a long view of your treatment, but also good to take one step at a time. Your description of the first six weeks is ideal. My answer to your colchicine question is: “whatever feels right for you.” Now I’m going to expand those short answers to aim specifically at you, Luke.

    100mg allopurinol is definitely the best first step for anyone who is not of Han Chinese, Vietnamese, or Korean origin. For those people, a simple genetic screening test will identify suitability for allopurinol. I’m going to assume you are not in those groups, so if you haven’t already done so, start the allopurinol now!

    I am also assuming that your doctor has been vigilant and taken appropriate blood tests besides uric acid. For gout patients, every blood test should include uric acid, liver function, and kidney function. Before allopurinol, these additional tests establish your personal benchmark for liver function and kidney function. Then, during treatment, abnormal results are the best early indication that specialist intervention is required.

    Whenever any GoutPal member has a blood test, I urge you to include the results on your Personal Gout Profile (the page that appears when you login). Be sure to include date, uric acid level, and uric acid scale. There is no need to include other results, unless you wish to, but you should always ask your doctor if these other tests were OK, and if not, make a note of the response.

    Whilst I’m talking about your Personal Gout Profile, it’s the perfect place to record any visits to your doctor, and any gout episodes, but always better to date your entries.

    Before I return to the ideal allopurinol dosing schedule, I’ll cover colchicine during uric acid lowering treatment.

    Personally, I was advised to take one colchicine pill per day for two weeks after an allopurinol dose change, and then as required – at the first sign of an attack. If not resolved after two to four hours, I took a second colchicine, within my one or two per day prescription. I now know that a slight improvement on that advice would have been to take the first colchicine last thing at night, with an optional second in the morning if inflammation present.

    For you, Luke, and for any other gout patient reading this, you must realize that my personal pain treatment package might not suit you. Colchicine has been prescribed badly in the past, causing stomach disorders by taking more than 2 pills per day, which has no additional benefit. If you’ve had bad colchicine experiences with more than two per day, then that is normal, so restrict to two in future. Colchicine is not for everyone so avoid if:

    • You’ve had bad experiences with one colchicine
    • Your immune system is compromised due to infection, or potential exposure to infection
    • You simply don’t want it

    Colchicine is a great way to stop inflammation spreading, especially when taken at the first sign. It does not reduce inflammation, so if swelling has already started, take an anti-inflammatory with your colchicine, then at recommended intervals. If pain remains unbearable after two hours, take a compatible painkiller such as Tylenol (paracetamol/acetaminophen). Always check with your pharmacist that your personal pain package is safe.

    You need that confidence in a personal pain package that suits you. With any uric acid lowering treatment, you might have a gout flare during treatment. The risk period continues until most of the old uric acid crystals, that are deposited round your body, have dissolved. The lower you get your uric acid level during the first year of treatment, the shorter period of time you are at risk. Those are gout facts that affect everyone, but personal factors might affect your allopurinol schedule.

    The biggest influence is your doctor. They often have their own agenda for allopurinol dosing, and it is often wrong. My answer to that is, it’s your body, so it should be you that decides what to do with it.

    Going back to Luke’s (and mine) ideal allopurinol schedule, the 100mg start is perfect. The minimum period after a dose change, before retesting is 2 weeks. In most cases, you might have to wait a few days for results prior to increasing allopurinol to 200mg, so let’s say the ideal is actually 2-3 weeks. 4 weeks/1 month is OK. 2 months is showing signs of lack of commitment. Waiting more than two months is a sure sign that either you or your doctor wants you to suffer gout forever (or at least doesn’t care).

    That establishes the starting dose, and testing interval, but what happens next? Some doctors might suggest 300mg, if blood tests show that uric acid level is not decreasing rapidly enough, and liver and kidney function remains OK. That is perfectly fine. 200mg or 300mg are valid choices. They are both right if they have been selected as an option based on a patients latest blood test results, and medical history. They are both wrong if they have been selected because “that’s what we always do.”

    The same goes for subsequent tests, and increases. At some point, patient and doctor must decide on a suitable target uric acid level for the first year. I was able to persuade my doctor that “low as possible” was my best option, and so I quickly escalated to maximum dose. A more cautious approach might be “4 to 5 mg/dL.” The target is only wrong if it is above 5 without consideration for other disease (e.g. kidney disease, where the maximum is deemed to be 6mg/dL).

    So, if I haven’t bored the hell out of you Luke, with my long-winded explanations, let’s continue to refine your personal gout treatment plan. You’re off to a great start. 🙂

    #19823
    Luke Haymond
    Participant

    First Keith – I appreciate any guidance and realize that it will be on your schedule – as it should be. It sounds like I’m pretty close to a plan of attack. May I ask for a bit of clarification? If I understand your comments from above – the colchicine is taken preemptively as long as there has been no previous adverse effects? I seem to tolerate a single colchicine dose without any problem. Given that – and I realize we are all different – if you were me, you would take a single dose daily in hopes of avoiding any flare as a result of the allopurinol? And, once I land on a dose of allo that gets me to the sub 5 UA reading continue colchcine for two weeks and then suspend – realizing that I need to begin at first sign of flare.

    In summary, I have taken my first dose of 100mg allo and would take a dose of colchicine at bedtime if I am on target above.

    Thanks

    Luke

    #19824
    Keith Taylor
    Keymaster

    Yes Luke, if you haven’t had problems with colchicine in the past, one at bed time for a week or two is a good pre-emptive strike. Just be aware that it might not be the complete answer, but it’s a great advantage tomorrow morning.

    If you get a twinge, it won’t be as bad as if you hadn’t taken the colchicine pill, so take another first thing in the morning, and indomethacin if necessary. A bit of preemptive pain treatment will help you enjoy your day.

    If you don’t get a twinge, just enjoy your day 🙂

    Point 2 in a moment, just in case I get distracted.

    #19825
    Keith Taylor
    Keymaster

    You can’t really align uric acid level with gout pain or, at least, not in a short-term, cause and effect way.

    Gout pain comes as uric acid forms crystals, but not always.

    Some days, your immune system deals with them. Maybe with some low-level symptoms, but not a gout flare.

    Other days, your immune system get’s overwhelmed and calls in reinforcements. That intense inflammation process is the familiar agony of gout.

    The flashpoint varies from person to person. I strongly suspect that it also varies for individuals at different times. In fact, this is almost certain, as the latest science tells us that exposure to uric acid crystals alone will not cause gout. Our pain pathways seem to require the presence of fatty acids in order to produce the acute gout attack. This is fairly cutting-edge, and the processes are not fully understood yet. The important point is:

    You can do everything right for long term uric acid control, and still get an unexpected gout flare.

    The reason for this lies in my emphasis above. Our immune system only responds when it sees the threat. It only signals the emergency as a gout flare when enough uric acid crystals are exposed.

    But, uric acid crystals are exposed when they form, and might be exposed again when they start to dissolve. In the first instance, our immune cells sacrifice themselves, and engulf uric acid crystals. This is the same process that kills an infection. Unfortunately, uric acid crystals cannot be killed. They become hidden by a coating of dead white blood cells. Those hidden uric acid crystals are the timebomb that all gout patients face when they start lowering uric acid. In sufficient numbers, with sufficient fatty acids around to complete the pain signal, dissolving uric acid crystals might cause a gout attack.

    Somebody recently in the forum has been complaining of gout flares several months after starting allopurinol. It is a very complex situation, but with some common sense, it can be managed. The first milestone is to get uric acid down to 5mg/dL. That removes any doubt as to where the pain is coming from – it must be from dissolving uric acid crystals.

    That is why I emphasize the importance of a personal gout pain relief package that works for you. It gives you the confidence to ride out a gout flare. Then you soon realize that each successive gout flare is less frequent, and less intense. That pain package helps you through the hard times. After a few months, you never need it again. Leastways, not for gout. I feel much more confident now about pain management, and that helps me through other of life’s troubles.

    I know that is a long explanation, and I could probably make it more succinct. My main reason for it is so that you can understand that gout attacks might appear, somewhat randomly, until you get most of your uric acid crystals dissolved. There is no complete answer to the question of how long this lasts. The two major factors are how much uric acid has formed crystals in your body, and how low is your uric acid level. It’s hard to measure the first, and it’s historic, so you can’t do much about it. There are no hard and fast rules, so you’ve got to analyze your situation as it changes.

    If you are happy to take colchicine daily, then I do not believe six months should pose any serious side effects. Colchicine side effects are almost always stomach-related, and obvious. If you want to take as little as possible, my doctor told me that the most likely time for attacks was the two week period following an allopurinol dose increase. It’s precisely because attacks cannot really be predicted, that I believe the best approach is whatever suits you. Six months of daily colchicine, with sufficient allopurinol to make uric acid safe, gives many gout patients complete freedom from any more gout attacks. But, there are no guarantees, so I prefer to say “do what you think is best, but ask questions if you don’t understand what is happening”

    I should finish by saying that you can also minimize problems during allopurinol treatment by avoiding both dehydration, and prolonged exposure to cold. When allopurinol has done it’s job, you want to do as much as possible to help your kidneys excrete it’s by-products, along with any dissolved uric acid. Some people might suggest avoiding alcohol, as it gives your kidneys more work to do. I believe I can counter this with extra water, coffee, and other gout-friendly fluids. Again, make your own mind up based on your preferences and gout facts that are relevant to you.

    I’m working now (*), but in my mind, I’m raising a glass to celebrate the start of Luke’s allopurinol journey. I want you to become the latest member of the “I found Gout Freedom” club 🙂

    (*) My life is 8 hours ahead of the posting time shown here – I am not considering celebrations mid-morning!

    #19826
    Keith Taylor
    Keymaster

    Oops! That was long-winded as I kept getting broken off with work. Who do these people think they are, just because I’m being paid to do something else.

    Anyway, more, succinctly Luke:

    once I land on a dose of allo that gets me to the sub 5 UA reading continue colchcine for two weeks and then suspend ? realizing that I need to begin at first sign of flare.

    Sounds perfect to me! 😀

    #19827
    Luke Haymond
    Participant

    You’re the best Keith…. stay tuned

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