Gout Advice Please

This topic contains 12 replies, has 3 voices, and was last updated by  Keith Taylor 4 years, 11 months ago.

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  • #18554

    mike forster

    Hello to all from someone new to this forum but not to gout!

    I’m Mike, a 53 year-old 6′ 4″ 230lb (albeit wide at the shoulder and narrow at the hip) male from North Yorkshire in the UK

    I’ve battled with my weight – and excessive personality in terms of eating and drinking I should admit – all of my life and am currently endeavouring to slowly and sensibly get back to 200lbs.

    Uris acid levels have always (last 20 years) been over range at 7 to 9. First Gout in ankle in 2001. Successive yearly or bi-yearly attacks always ankle or big toe (worse than ankle!) until 2011 when started allopurinol. This lowered uric acid to 3.8 so all good for a year or so. Not being ready to accept that I would be taking a pill for life, I stopped it in late 2012. Odd twinge now and again since, but no gout. But last few months a lot of work/money pressure (now happily resolved) with comfort eating crisps and drinking wine and loads of fish which I adore and……

    Yep. A BELTER of a big toe gout attack kicked off last Sunday. Had had twinges for a couple of days previously, but had stupidly ignored them and had run out of colchicine ages ago anyway. Ironically, my latest general health check blood-work of a couple of weeks previous had shown UA at all time high of 9.4.

    So. The last week has been as HELLISH as only fellow sufferers will be able to fully appreciate! Almost couldn’t get about the house at all. Couldn’t put any footwear on, couldn’t drive etc. etc. Grumpy as hell. And the PAIN! Albeit the big toe joint primarily affected/involved, my whole foot ballooned up and purple as hell when trying to stand up/place any weight on it. Visited doc (driven by my better half) on Tuesday who gave me colchicine 3 a day for 4 days (and allopurinol – see below).

    So by end of yesterday with my colchicine finished my situation has improved greatly mobility and pain-wise, but the big toe joint still inflamed angry and red and tender. But the whole foot looks and feels a lot better in general and I can walk without a stick or too much sign of a limp.

    SO guys, my situation is this. I’m hoping/assuming that I’m over the worst. I can’t take any colchicine again for another 3 days and aren’t supposed to start my allopurinol for – my doc says – at least another week. SO; my plan is…. hope my situation continues to slowly improve (given how bad this attack was, I can’t see this recovering anything other than slowly) without any further colchicine for say 5 days, THEN start 150mg allopurinol per day + 1 colchicine per day for a month, and then up the allopurinol to 300mg per day and continue the colchicine for a further 2 months. Does that sound a good strategy? Or should that be 2 colchicine a day given I’m a big chap? I have ordered a UA testing kit that will enable me to monitor my UA levels fortnightly for a year while I get everything fine-tuned. I’m ultimately hoping to control this with a combination of lifestyle/diet and 100mg allopurinol, but have now learned my lesson and resolved to stay on 300mg per day of allopurinol per day for life if that’s what it takes to stay clear of the curse that is gout!

    Any advice or input from you guys would be greatly appreciated, and I hope all of you out there are enjoying full lives with your gout firmly under control – thanks not least to this excellent web resource, and many many thanks to Keith for that.

    Kind regards,

    Mike

    #18578

    Benedict
    Participant

    Hi Mike

    Hope your pain has receded. I’ve had a similar experience. Had my first uber-painful gout attached 11 years ago (at 26) and since then only had minor attacks which quick consumption of pills sorted out. Had a major painful attack a few weeks ago (in my big toe again). Colchicine and ibuprofen got rid of the attack after a few days, although I had a painful one a few days later but took the meds as soon as I noticed which helped.

    Regarding meds, I’ve been taking Colchicine twice daily (500mcg), and ibuprofen 400mg a time whenever I feel pain. I’ve been feeling twinges, bits of pain every now and then in both feet but particularly when I bend the joint in the ‘gout’ foot – this could most likely be silent gout attacks with the colchicine stopping the white blood cells from attacking the urate crystals and causing the pain (i think thats how it works…)

    Did you stop the colchicine because of stomach issues? As i’ve been taking it continuously and I would only stop if I got another infection…

    Am seeing Doctor tomorrow about starting Allopurinol, will ask for 100mg initially. Then increase it after a month depending on uric acid levels – mine is 9mg/L at the moment.

    I was thinking of getting a UA testing kit but decided against it as you need to be very disciplined with the testing and measure the trend. And you would (I assume) get better results from your GP if you requested monthly tests to monitor your levels.

    Anyway sorry for the ramble, hope it all gets better soon.

    #18603

    mike forster

    Hi Benedict,

    Thanks for the response.

    WRT colchicine, you say you’d only stop if you got ‘another infection’ – what sort of colchicine-casued infection have you had previously? (assuming my inference is correct of course).

    I know Keith – the owner of this excellent web resource – always stresses no more than 2 colchicine per day, but that it’s OK to take one or two 500mg per day as prophylactic protection whilst introducing allopurinol for the first few months. That said, I’m a bit wary about long term colchicine myself. Having bought a UA meter, I’ll be monitoring weekly as I introduce the allopurinol – which I just have at 100mg/day from Sunday – and will only use daily (1 x 500) colchicine if my UA levels start to drift up. My last test of this last Saturday was 8.2 (after a week of extra dietary discipline and lots of lemon water, turmeric, cider vinegar etc.) which is a lot better than the 9.4 it was a few weeks ago preceding my last attack (which I’m still slowly recovering from).

    I have a 70 year-old friend who’s had gout attacks for 25 years: all he’s ever done to treat his – thankfully relatively infrequent – flares is to immediately take 2 colchicine and then one an hour thereafter until he’s sick! He’s a tough old boy and this has always worked for him. I’m guessing that Keith won’t be too impressed with such a cavalier approach though!

    My own latest big toe gout nightmare started 8 days ago (after a couple of days strong twinges of discomfort that I ignored…. )long time since I had gout and thought I had somehow become immune to it… stupid beyond belief…). The worst is behind – as in almost unable to walk even with two sticks – but even though I’m hardly limping now the big toe joint is still enlarged and a bit angry whereby I’m still taking it easy and not going for my usual long walks again yet. This is a BEAST that one really has to do everything one can to get it fully under control for the rest of one’s life. And as Keith here emphasises, that can only be done by getting UA levels DOWN below 5.0 for the rest of one’s life.

    Hoping both of our situations improve once our allopurinol therapy becomes established/effective.

    Best regards,

    Mike

    #18604

    mike forster

    Benedict,

    Sorry: didn’t answer all of your questions.

    I didn’t stop the 3 x 500/day colchicine for stomach issues: all the advice/blurb says not to take more than 12 x 500 colchicine per ‘course’ and then to wait at least 3 days before taking any more colchicine after such a 12 tablet course.

    I have taken it in the past to the point of quite violent diarrhoea (wow; just spelled that correctly first go!) – 2 x 500 first hour and then 2 or 3 x 500 more same day would do it.

    Don’t worry about rambling. I’m a master at it myself! Anyway, good to talk and share experiences.

    Best,

    Mike

    #18611

    Keith Taylor
    Participant

    Great discussion guys.

    Special thanks to Mike for your kind words, and being a fellow Tyke. I’m in Shipley.

    Colchicine
    I changed my views on colchicine based on US research when it became the licensed medicine: Colcrys. The safety data showed that there was virtually no additional benefit from taking more than 2. About the same time, I learned how colchicine works, which let’s me see why maximum of 2 per day is good. Having said that, if I was in that sort of pain, I might be tempted to go further, but I couldn’t encourage others to do that.

    Colchicine is effective only when you take it at the first sign of an attack, or as a daily preventative. It poisons your immune system so you won’t produce more inflammation, but it does nothing for existing inflammation or pain. That’s why I always recommend backing it up with anti-inflammatories, as necessary. In extreme cases, I would alternate ibuprofen with paracetamol, as I was taught to do when I got hopitalised with gout over 18 years ago. There are other combinations of anti-inflammatory and analgesic, but best to get advice from a nurse, or pharmacist. Some doctors are also good at pain control.

    Of course, it begs the question of how long you should take colchicine for. When I first started allopurinol, I did take one daily colchicine as a preventative, with a second an hour later if I felt a twinge. I can’t remember how long I did this for, but not very long. I reverted to as required quite soon, as I really didn’t want to be compromising my immune system any longer than I had to.

    It might be significant that I went for the lowest possible uric acid, so as to minimise the risk period for gout flares.
    Allopurinol
    The golden rules on allopurinol dosing haven’t quite reached the front line in many cases. Key changes in recent years are:
    1. Agree a target uric acid dose for the first year. This must be on a case-by-case basis taking account of gout history and any other ailments. Also consider pain relief strategy that matches the likelihood of continuing gout flares. If gout pain relief is in place, there is no reason to delay starting allopurinol.
    2. Pre-screening for certain ethnic groups at risk of hypersensitivity.
    3. Start at 100mg for 2 weeks
    4. Review uric acid, kidney function, and liver function test results. Increase allopurinol dose gradually.
    5. Retest and repeat every 2 weeks until target uric acid reached.
    6. Retest at appropriate intervals – say 3 months
    7. When uric acid has been below 5mg/dL and no gout flares for six months, start slowly reducing dose to maintain uric acid no higher than 5.
    8. Review uric acid, kidney function, and liver function test results at least once per year for life.

    Because it has to be a personal plan, some of these steps might be adjusted to suit the doctor-patient relationship.

    Target uric acid is the obvious one, but also test intervals and dose adjustments might vary depending on circumstances. The emphasis should always be on safety, so if in doubt, call in a rheumatologist.

    The kidney function and liver function tests are another reason why home uric acid tests are not right for everyone. These tests are important for all uric acid lowering treatment, including Uloric (febuxostat). Some would say, especially with Uloric given it’s lack of long history.

    As always, individual cases might differ. However, it is important that reasons are given, so at least you know your doctor has considered the latest guidelines, and is not simply repeating 20 years custom and practice. Gout understanding has grown enormously in recent years. However, from personal experience, 3 out of 4 doctors have not kept up. Early preventative gout pain relief and immediate aggressive uric acid lowering are the best chance your beleaguered joints have got.

    #18612

    Benedict
    Participant

    Hi Keith

    Regarding point no.2 “Pre-screening for certain ethnic groups at risk of hypersensitivity.”, I’m from an Pakistani background – is there any prescreening I need to get done?

    #18626

    Keith Taylor
    Participant

    @benedict the specific gene associated with allopurinol hypersensitivity is HLA-B*5801.

    This might be found in anyone, but is most common in people of Han Chinese or Thai descent. The specific advice from American College of Rheumatology (ACR) guidelines is to pre-screen “Koreans with stage 3 or worse CKD [Chronic Kidney Disease], and all those of Han Chinese and Thai descent”

    This prescreening advice is essentially an economic test. Those groups are most likely to have the gene, so the risk justifies the cost of the test. People outside those groups might still have the gene, but it is so rare that it is not considered worthwhile testing.

    In all cases, we start the dose at 100mg per day. This identifies people who are intolerant, before dose becomes too high. This is the level of safety required, so you know what to think of any doctor who suggests starting at 300mg per day. I believe the signs of rash in hypersensitivity are obvious, but the kidney function and liver function tests also add a further level of safety.

    Allopurinol intolerance has been mentioned in another thread recently. To be clear, if the HLA-B*5801 gene is present, then allopurinol should never be prescribed. For other intolerance, desensitization often works. This is achieved by very small increments achieved by dissolving a tablet and slowly increasing the solution strength and/or volume. Of course, other uric acid lowering drugs are now available, with more in development, so allopurinol desensitization might not be necessary.

    #18670

    mike forster

    Update.

    Two weeks tomorrow since left big toe flare up – that was horrendous as I negligently (not having had gout for 3 years and thus having no colchicine etc.) did not try to stop it getting established – FROM HELL!

    By last Sunday I was walking without sticks and able to drive short distances (manual gearbox).

    Late Oct UA 9.4. last Sat UA 8.2 This morning UA 6.5 (all fasting).

    100mg Allo started last Sunday (with 1 colchicine prophylactically). Thursday evening mild flare-up in outside of left ankle (quite painful but never got to redness or swelling or heat) – 100% headed off by 2 colchicine and 3 x 400mg ibuprofen for 2 days.

    Went for a walk this morning for 1 1/2 miles on beach – big toe joint still slightly swollen and not easy to roll foot forward off – so still slight limp – but much better at end of walk than at start.

    This last two weeks big push on limiting purines – no meat or fish, no alcohol, no pulses. Mainly vegetables and salad, white rice, an egg or two, avocados, rice, quinoa, halloumi, nuts, lots of organic tart cherry joyce and squeezed lemon juice in water drinks etc.

    So that’s me. Will update every two weeks. Am now breaking 300 allo into two so 150mg/day for 3 weeks before going onto 300mg/day. Will continue 1 x 500mg colchicine prophylactically for another 2 months and 3 weeks.

    Target is UA <4 for 12 months before reassessing protocol.

    Good wishes to all and hoping you are striving to battle this beast as best you possibly can,

    Mike

    #18720

    mike forster

    This latest flare up (started 18 days ago) is proving very difficult to shift. Started in big toe joint then into ankle to lesser extent (same foot) then all settled down but big toe joint still swollen and I’m still limping a little.

    Almost seems like the big toe joint is free of the acute gout but left with some severe bruising (partial dislocation?) that feels like it is going to take weeks to settle down. Maybe all exacerbated a little in that I started Allopurinol before the episode had fully settled down (100mg with 1 x 500 Colchicine prophylactically). Not only big toe joint still enlarged and a little angry but some twinges in both sides of ankle today too – 2 or 3 x 500mg colchicine/day for next couple of days I think.

    Never had a gout flare up before that didn’t 100% fully resolve within 10 days where one would never know one had had it. This time boy do I still know about it 18 days on!

    #18723

    Keith Taylor
    Participant

    The thing about colchicine is, though very good at stopping inflammation getting worse, it does not reduce existing inflammation, or pain. Though inflammation will eventually subside naturally, it often takes time, as you are experiencing.

    I always found gentle exercise helped. To get to the point where you can bear to exercise, it depends on how bad the pain is. You can reduce inflammation with ibuprofen, or other NSAID. If that doesn’t reduce pain enough, you can support it with a pain blocker. Your doctor or pharmacist can advise what pain blockers are compatible with your NSAID. I was advised to alternate ibuprofen and paracetamol every 2 hours up to 4 times a day. I was also once prescribed with tramadol to block pain, but found it affected my mind too much.

    I hope it goes soon, Mike. Be patient – you’ll soon have uric acid safe, and this will be just a bad memory.

    #18743

    mike forster

    Hi Keith and all,

    Last few days been unpleasant left ankle-wise. Not horrendous, just a bit painful and only slightly red and swollen.

    Just did my fasting UA and from 9.4 five weeks ago I’m now this morning down to 5.3. And that with just three weeks of cutting purines (allied with lots of cherry juice, water with squeezed lemons) from diet plus 100mg Allo per day.

    Whilst traditional thinking advises against starting Allo until well after – as in 2-4 weeks – a gout flare-up, recent 2012 research (as discussed here by Keith) suggests no harm starting Allo during an attack (using 1 or 2 x 500mg prophylactically IIRC). I DID start the Allo before the gout flare up totally settled down. Why that attack has now been lingering on this last couple of weeks (all other attacks I have had this last 14 years have pretty much 100% resolved within a week) is, I think, because I actually have lowered my UA too quickly and too radically whereby I’m drawing out and re-mobilising old UA deposits. Just my take. And we are all, after all, unique experiments of one! I will admit that last night I indulged in some ham and white wine and my left foot feels better today than it has these last 3 weeks!! Maybe a little of what’s bad for you can on occasions be good for you too! Hey: maybe that’s the answer when starting Allo during a gout flare-up – enjoy a little of what’s bad for you in moderation so as to not allow the UA levels to drop too quickly!!

    #18753

    Benedict
    Participant

    “Hey: maybe that’s the answer when starting Allo during a gout flare-up – enjoy a little of what’s bad for you in moderation so as to not allow the UA levels to drop too quickly!!”

    haha I like it! I better order that steak!
    Are you recording UA values daily? I have a diet app which logs my my weight daily and works out a trend, it might be worth doing this for the UA if you’re not doing already.

    I’m in a similar position. Have been on Allopurinol for a week now but luckily no flare-ups, just bits of pain in different parts of both my feet but nothing major- am hoping its the loose crystals slowly dissolving away. My last attack was a month ago. I am taking 2 * 500MCG Colchicine daily alongside it.

    Interestingly, my bloods after my flare up showed my kidney function had dropped to 40 (50 and above being the safe number). I tried it again two weeks later but this time avoiding Ibuprofen and it had risen to 70. My doctor says my kidneys must be sensitive to Ibuprofen and not to take any.

    As I’m currently on 100mg Allopurinol and 2*500mcg Colchicine, if I start getting a flare up will Ibuprofen actually stop or recede the attack or is it simply to reduce the pain (by reducing the inflammation) i.e. should I just stick to the Colchicine until my Uric Acid levels are lowered?

    #18755

    Keith Taylor
    Participant

    Mike: “And we are all, after all, unique experiments of one!”

    The wisest words ever spoken about gout.

    @benedict Colchicine should prevent flares happening. If not then usual procedure is:
    1. Anti-inflammatory to reduce inflammation and pain.
    2. Pain-blocking analgesic to block any remaining pain.

    If ibuprofen is not suitable, you could try other NSAIDs such as naproxen, Alternatively skip straight to pain-blocker. I’m surprised your doctor hasn’t suggested paracetamol, which is a special case analgesic. I don’t know all the medical details, but it is not generally regarded as an anti-inflammatory, yet it has anti-inflammatory properties. I guess if I understood that, I’d be earning $1000s an hour as a medic instead of running this website 🙂

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