Keith’s GoutPal Story 2020 Forums Please Help My Gout! Coming off Allopurinol?

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  • #2857

    Once my current gout attack subsides, I am about to start with Allopurinol, after having suffered on and off with gout since I was 22 (now 36). I guess the symptoms were never so bad as to make me take action until now (although this is not my worst attack – I have just grown weary of them).

    The problem is that i don't want to take a drug every day for rest of my life. I have read that being overweight is a significant factor, and that weight loss also triggers attacks. Well i am currently dieting (sensibly, i think) and going to the gym etc. I have lost 22 pounds since the start of the year, and intend to carry on loosing the weight until I hit the “normal” BMI range (half way there).

    If I get to that point, is there anyone out who has done something similar and been able to get off the drug.

    My doctor has prescribed a blood test to find out my normal uric acid level. The last one was 0.52 mmol/l (which i think is 8.74 mg/dL – but I may be mistaken in the conversion). Then in a couple of weeks I am to start on 100mg Allupurinal and take a blood test a few weeks after that. Does that sound reasonable? 100 mg sounds quite low compared with some on here…

    Also, does starting this treatment now, whilst I am relatively young, give me a better chance of not getting the dreaded few months of powerful attacks some have reported when starting this drug???

    Sorry for so many questions….

    Mark

    #4526

    First off, thank you for posting your uric acid test result. It is so much easier to respond when I have the exact number. Yes, your conversion is accurate, and you've inspired me to add a page that explains the different measurement scales of uric acid levels.

    It is standard practice to start at 100mg, and increase until your level drops to .4 mmol/L. I believe this cautious approach lessens the risk of a serious reaction if you are one of that very rare breed of allopurinol intolerant people.

    The weight loss is a great plan. Combine this with regular uric acid tests, and you can be sure that your dose is kept to the lowest that you need. I have anecdotal evidence that this could allow you to stop taking allopurinol, but no proven data. Let's hope someone else has some relevant numbers.

    Frequent uric acid tests, and the possibility of continuous allopurinol are a way of life now. Much better than increasingly painful gout flares and more dangerous bone and tissue damage.

    #4527
    zip2play
    Participant

    Mark,

    It's just NOT going to work.

    Daily allopurinol is no more appealing than daily insulin…but both are necessary to cure their respective metabolic flaws. At least allopurinol is dirt cheap and has few, if any, side effects

    Your weight loss is applaudable but remember, weight loss is a MAJOR trigger for a gout attack.

    #4869

    My update:

    Started daily allopurinol about five weeks ago (100mg dose). Initial side effects:

    * Intestinal pain

    * Spaced out

    * Mild Gout in places I had never had before

    * Weak forearms

    * Generally feeling less sharp (mentally)

    * Minor pins and needles

    * slightly blurry eyes

    Most of these have now lessened to the point I would not class them as a problem.

    Current side effects:

    * Sensitive skin around my middle and tops of legs

    * Easy bruising

    Just got back from doctor with my new results – expecting them to show very minor improvements. But I am v.surprised:

    Some time ago: 0.52 mmol/l – 8.74 mg/dL

    12/5/09 – 0.59 mmol/l – 9.91

    29/6/09: 0.34 mmol/l – 5.7 mg/dL

    As you can see my levels are now in the safe range – which is great because the side effects I have experienced are quite unpleasant and I really didn't want to have to raise my dosage…

    Now having my blood platelet levels checked to see about the easy bruising.

    Do you think my other side effects are normal and will they eventually go away do you think?

    Mark

    #4870
    zip2play
    Participant

    Side effects can be bizarre, but in truth I don't think yours are related to allopurinol.

    Of course, the way to check is standard: stop the drug for two weeks and see if all your symptoms go away and then restart the drugs and see if they come back. In fact, for something so important as lifelong gout control why not go two cycles before you are tempted to stop the drug…better safe than sorry.

    But this assortment of side efffects from so small an amount of allopurinol over so short a time period would put you in the teeniest imagineable minority. Are you taking any other drugs?

    Are you sure you're just not LOOKING a little harder?

    Anyway, good numbers which of course will get better with 200 mg.Wink

    #4871

    No other drugs – except Indomethacin when gout attacks hit.

    I truly believe these are side effects – especially the spaced out/tired feeling I got/sensitive skin and gout in new locations. I have never experienced such profound symptoms and they started almost immediately after taking the drug – as I said though, most (except the sensitve skin – which feels like mild sunburn) have now gone away.

    Do you really think 200mg would be sensible? I thought my levels have now reached the ideal range?

    Plus will levels continue to drop, once my body rids itself of the built up urates over time?

    Mark

    #4872

    My opinion (which, as usual is totally unqualified, and based only on what you have told us so far in this thread), is to keep the allopurinol at 100mg.

    I say this for two reasons.

    First, you have achieved the uric acid level goal. One test is too soon to be certain, and I would only consider changing if two or three consecutive tests point towards a need to increase.

    Secondly, though it is quite likely that the perceived side-effects are due to something other than allopurinol, you want to keep as many things constant whilst you are under investigation. Assessing sensitivity to substances is fraught with all kinds of difficulties. The last thing an investigator wants is for the patient to make random changes to medications (or radical lifestyle changes). By all means, suggest the break from allopurinol to your doctor to see if this is the problem, but the time to do this is if he is still puzzled after you get the results of the new tests.

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