Time to start allipurinol ?

Keith’s GoutPal Story 2020 Forums Please Help My Gout! Gout Symptoms Time to start allipurinol ?

Viewing 18 posts - 19 through 36 (of 58 total)
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  • #6488
    cjeezy
    Participant

    GoutPal said:

    You've mentioned “healthy diet” a couple of times recently in a way that suggests that you feel it is not good for you. What do you mean by healthy diet?


    I just meant that certain healthy foods like spinach,  legumes, etc are bad for gout sufferers but otherwise would typically be healthy for the average Joe.

    #6489
    nokka
    Participant

    Hi, cjeezy and utubelite.

    I've read on another post about how you had side effects when you first went on Allop. Can you give me a bit more detail of how this went. How long did the side effects last ? Do you still have them now ? What exactly were they and how bad were/are they ?

    #6495
    cjeezy
    Participant

    To be perfectly honest with you nokka, at the same time I started AP, I developed a horrible case of bronchitis (that lasted 2 months) and also had quite a bit of stress and anxiety going on at the time so its very hard for me to tell exactly why I felt like crap lol.  Was it the AP? probably.  Did the other things make the AP side effects worse? Possibly.  Anyway, to answer your question, the main side effects for about the first 30 days for me were:

    – chest flutters/palpatations

    – dizziness

    – fatigue

    – slight blurred vision

    On a good note, I think the mild side effects are short-term.  I perfectly feel fine now except for a couple chest flutters every once in a great while and of course some lingering joint pain.  Like any drug, some peoples bodies just react differently.  Like Zip has commented on in previous posts, he's never had a single negative side effect in nearly 20 years.

    #6497
    Utubelite
    Participant

    Hi Nokka,

    For me, the main side effects in first 4-6 weeks were:

    1. Drowsiness

    2. Some ithcing, more so when I increased the dose every two weeks

    3. Sensations of food coming up the food pipe

    4. Lethargy

    5. A rash – it is still not fully gone and it is a small rash, about half cm in size….doctor say it is not due to AP but some insect bite as it happened after I came back from doing evening exercise near a creek.

    To be frank, these were all minor to mild, nothing major to report. The body seems to have adjusted to 300 mg dose I am on for last 6 weeks.

    And there are Right effects – low SUA levels( mine are hovering around 4) and SNORING is cured like it never existed….

    #6502

    cjeezy said:

    GoutPal said:

    You've mentioned “healthy diet” a couple of times recently in a way that suggests that you feel it is not good for you. What do you mean by healthy diet?


    I just meant that certain healthy foods like spinach,  legumes, etc are bad for gout sufferers but otherwise would typically be healthy for the average Joe.


    No they are not bad.

    Many people get confused about purines (including myselfSurprised). Yes, uric acid comes from the breakdown of purines in the presence of xanthine oxidase, but there is no evidence to suggest that this happens to vegetable purines, and some evidence to suggest that it doesn't.

    When your allopurinol stops the xanthine oxidase being produced, it's irrelevant anyway – as it is for all food. Though this does beg the question “can food increase xanthine oxidase production?”

    I'm looking into this, but not getting far at the moment. I have found one reference answering the opposite question – flavonoids inhibit xanthine oxidase reduction.

    If anyone has any info on food (or anything else) that increases production of xanthine oxidase, I'd love to see it.

    #6503
    trev
    Participant

    I don't want to red herring you GP- but I've got a feeling that it may be connected with the same untoward mechanism that grapefruits have with statins, BP meds, and others inc Colch. our little friend!

    I think it's an enzyme based thing.

    Like you know- it's easy to get bogged down online and lose many a tasty text.

    Luckilly- many do come back with a bit of searching. Hope it helps.

    #6506
    Utubelite
    Participant

    Here is a link for study that shows the vegetable purines do NOT contribute to Gout.

    http://www.arthritistoday.org/…..t-diet.php

    GoutPal said:

    cjeezy said:

    GoutPal said:

    You've mentioned “healthy diet” a couple of times recently in a way that suggests that you feel it is not good for you. What do you mean by healthy diet?


    I just meant that certain healthy foods like spinach,  legumes, etc are bad for gout sufferers but otherwise would typically be healthy for the average Joe.


    No they are not bad.

    Many people get confused about purines (including myselfSurprised). Yes, uric acid comes from the breakdown of purines in the presence of xanthine oxidase, but there is no evidence to suggest that this happens to vegetable purines, and some evidence to suggest that it doesn't.

    When your allopurinol stops the xanthine oxidase being produced, it's irrelevant anyway – as it is for all food. Though this does beg the question “can food increase xanthine oxidase production?”

    I'm looking into this, but not getting far at the moment. I have found one reference answering the opposite question – flavonoids inhibit xanthine oxidase reduction.

    If anyone has any info on food (or anything else) that increases production of xanthine oxidase, I'd love to see it.


    #6519

    Personally, I prefer this coverage of the vegetables and gout research, but I'm biasedWink

    That was, one of my first gouty discoveries and the reason I decided to try and explode a few Internet Gout Myths. That page, and the associated research are long overdue for a makeover, but it is a shame that so little specific research has been done on the benefits of diet since that report.

    Other than the pointers that dairy products (statistically) appear to help gout, and vegetables are not the villains that they were once thought to be, there is little research into gout and diet – no money in it I guessCry

    #6526
    trev
    Participant

    I've seen other reports clearly stating that vegetable purines have no impact on gout.

    I haven't the links- but as we have to eat something- I prefer the least dodgy!

    #6533
    zip2play
    Participant

    The major purines of the human diet are from protein and nucleic acid breakdown break down to guanine and xanthine, plus ingested xanthines.

    What they all share, including uric acid, is a double ring structure that humans have llost the enzyme to break down. The ultimate oxidation product, i.e., the simplest form of this ring is URIC ACID. THe bloodstream hasn't clue one which food put the double ring structure afloat only that it must be dealt with and it is converted by the enzyme xanthine oxidase into uric acid, whether it came from a pea, a cup of coffee,  a veal thymuus (sweetbread,) a sardine, or a soy bean.

    Other animals have an enzyme called uricase which can break this bond but humans do not so we are limited by the kidney's slow ability to excrete the product.

    It is not one food or another food that causes urate overload, any more than it is calories from bread or meat that make us fat…it is the totality of input exceeding the totality of output that fills us with urate (or fat.)

    Flood your body with vegetable xanthines (major final purine) and you will get gout. In fact didn't we have a vegetarian on board with gout recently? Remember, a floating xanthine molecule does not fave an attached “V” to it to show it came from a coffee bean…it is identical to one that would have an attached “M” or “F” (for meat or fish.)

    Of course, never underestimate that in general, an all vegetable diet is much lower in purines (xanthines, nucleic acids) than a high meat diet. But a vegetable purine cannot be ignored in a mixed diet.

    And all that is why so many of us prefer to take allopurinol and forget all about these bothersome details. 😀

    #6534
    trev
    Participant

    Well explained Zip!

    I think a major problem in getting a handle on gout is the  different view taken on attacks- and long term cause/management on the other hand.

    Someone close to an attack would find a heavy meat meal pretty close to a 'cert bet'- but the inability to handle all purines could have a multitude of components over many years.

    Someone on a vegetarian diet would theoretically be given more years of grace- but if that person had other co-factors ,not that many.

    Too many variables and not enough research-again!

    I vary from many here , including Zip – in that I think careful diet, with lifestyle care coupled with [possibly] helpful natural  approaches can be a slower, but still valid, way to gout management.

    On this, I definitely feel I'm making progress.

    #6594
    nokka
    Participant

    Hi, guys; thought I'd post an update.

    I spoke with the Doc again and he agreed that 100mg of allipurinol per day should start. He is of the opinion that that should be sufficient while I'm overseas and prefers me not to increase the dose while away. The plan is then to look again at my UA levels when I return and take a view from there. He agreed that it shouldn't be a problem coming back off the drug, if the levels are low enough. Similarly, of course, I may need a higher dose – we'll see.

    I started 100mg just over a week ago. First 2 days felt a bit lightheaded for a couple of hours after taking – which I guess is the body getting used to the drug. Day 3 – had some pain return to my foot and knees. I slept nervously, wondering if maybe I would trigger another attack. Next morning, pain had gone.

    Since then I've had some good periods of very low or no symptoms; and then some tingling in the foot or knees – nothing major so far though.

    My monitor has showed scores between 5.1mg/dl to 7.0mg/dl with average 6.0 mg/dl since starting. The higher scores were always when I had the tingling or pain, so hopefully that may be some of the easier crystals melting. That's what I'm hoping anyway.

    #6596
    zip2play
    Participant

    nokka,

    I would go to 300  mg. allopurinol as soon as possible. A week at 100 mg. is long enough to ascertain hypersensitivity like hives, itching, swollen lips and eyelids etc. After 2 months of 300 mg., a blood test will tell if you can decrease the dose but NOBODY stays on 100 mg. as the final dose.

    I think fiddling with too low a dose of allopurinol INCREASES the chance of further attacks, the last thing you want when travelling.  Better too much allopurinol than too little. In that respects it's a bit like antibiotics…a half dose is worse than none at all.

    #6597
    nokka
    Participant

    How so ? I can't see how decreasing my UA levels INCREASES the chance of having an attack. (apart from the crystals melting reason).  I appreciate that it may be that I have a higher chance than if I am on 300mg and therefore have lower UA levels. But surely my chances are better than if I took nothing.

    My feeling is that I am a borderline case and it is touch and go whether I need the drug or not. A low dose, logic suggests, will get me below the danger levels the majority of the time. Unless I'm missing something ???

    #6600
    cjeezy
    Participant

    Nokka,

    Just a heads up, but I started on 100-200mg of AP and my levels dropped to 4.5-6.0 (or somewhere around there). It was great at first because the initial lower dosage decreased my SUA to an acceptable range. The challenge is that once the “initial” acid is removed, your body stary\ts breaking down the solid crystals which once dissolved, can spike your levels back up above 6.5 and cause another attack (just like what happened to me).

    So a long story short, when I started on 100-200mg of AP my SUA was between 4.5-6.0. I’ve now been on 300mg of AP for almost 2 months and my SUA is 4.5- 5.5 so the lower dosage would probably not be sufficient anymore.

    #6601
    trev
    Participant

    This adjustment to dosage witth meds is probably why many are wary of long term meds [as for BP for example].

    Once the body adapts to incoming meds- levels are either needing to be increased, the effects reduce or further adjuncts are needed.

    Some report this effect on here after years on Allopurinol.

    This isn't a reason to refuse it, but CJ above has illustrated how it can show up in use.

    The unknown variable here is the amount of entrained urate in the joints etc- and how it comes into solution over time, with or without uroscoric drugs.

    My caution about more meds isn't just the side effects & loss of effectiveness over time but the hit and miss tendency of what is really going on in the recipient and the real long term cost to health.

    #6608
    nokka
    Participant

    Thanks, guys.

    I see your point cjeezy, but remain confused. Someone who is not taking allipurinol is advised to reduce their UA levels, usually by a more suitable diet or weight loss and exercise. Surely if they get their levels down to, say, 4.5 to 6.0 they would be in exactly the same position ? ie dissolving crystals increasing their levels back up again which could trigger an attack. As its extremely unlikely that a gouty without meds could get any lower than this, then that means someone without meds is NEVER going to be free of gout.

    I'm also a bit confused by the numbers, to be honest. We are advised to get below 6 mg/dl as below that figure existing crystals will dissolve. Right ? I think I've also seen somewhere that above 6.8mg/dl they start to form. Is that right ? This suggests that between the 2 numbers nothing much happens. If, on occasion, someone goes above 6.8, but most of the time they are below that figure – indeed below 6, why is that such a danger ? Surely it has to be better that way than to be nearly always above 6.8, which I suspect where most people with gout are at.

    Nothing surprises me with this upside down, Alice in Wonderland condition where nothing is as it seems, so perhaps my logic falls down somewhere…Confused 

    #6614

    Great issues nokka,

    On the first point, the issue of 300mg v 100mg  is separate from the comparison between allopurinol-taker, and diet-manager. Once you have made the decision to take allopurinol it is a question of how best to take it, and zip2play's advice is spot on.

    On your second point, you are absolutely right to say that between 6.0 and 6.8, nothing much happens. Natural fluctuations mean that either of these readings could mean that new crystals are forming, old crystals dissolving, or no change. No number can be interpreted precisely because many other factors come in to play. What is certain is that, the nearer you get to 6.8, the higher your chances of uric acid crystals forming. This risk reduces as your uric acid level reduces until, at 6mg/dl, the risk of new crystals forming is very, very slight unless you are very, very cold.

    Moving on from that generalization, you need to consider your own situation. On allopurinol, once you have proved it is safe for you, your plan is to stabilize uric acid around the 6 mark. This is easy if you've only had gout for a short time, as the pool of existing crystals is too small to have much effect. Where you have substantial deposits, these will affect the early months of allopurinol significantly. Dissolving crystals can push the levels up again, and there is a hellish place around the 6-6.5 mark where you are almost perpetually dissolving and recreating crystals.

    That is why it pays to aim for 5mg/dL. If you want to get rid of old crystals as fast as possible, aim for 3.

    On allopurinol, you have that choice. A diet-manager can only aim as low as possible and accept that it might take years, if ever, to get rid of old crystals.

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