My Gout Story

This topic contains 34 replies, has 4 voices, and was last updated by  Keith Taylor 3 years, 3 months ago.

Viewing 17 posts - 19 through 35 (of 35 total)
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  • #22111

    Paul
    Participant

    Hi Keith/All,
    So I had that drink….
    or two..
    All was OK
    waited a week, had another, just one…
    All OK
    waited a few days
    until..
    my birthday.

    Many drinks later…
    gout πŸ™

    Yes it’s back. Been off work. Gutted.
    The attack hasn’t lasted as long as before. I’ve stayed on the allopurinol, (300mg). Started back on the colcicine and taken naproxen for pain.
    Got doctors again next week. Acid levels went from 0.66 to 0.52. Doctor target 0.34.
    Asked about upping my allopurinol dosage to 600mg.

    So Keith, was it the booze? Was it likely to happen anyway? It’s now 6 weeks into the allopurinol.

    #22112

    Ron Avery
    Participant

    Hi Paul,

    Sorry to hear about your recent flare up. Flare ups within the first six months to one year of starting Allopurinol are not uncommon. Actually, I believe they’re almost expected as the old crystals lodged in the joints dissolve. In all likelyhood your consumption of alcohol is purely coincidental.

    It’s encouraging that your flare up didn’t last as long before as that’s usually what happens as your old crystals dissipate.

    Keep doing exactly what you have been, colchicine & Naproxen during flare ups and stay on the Allopurinol. The old crystals will eventually dissolve and no more flare ups as long as your uric acid level is below 5 mg/dl.

    I’m sure Keith has much more useful information to contribute but based on my experience you are on the right course so keep at it !

    Cheers,
    Ron

    #22113

    Ron Avery
    Participant

    Hi Paul,

    Sorry to hear about your recent flare up. Flare ups within the first six months to one year of starting Allopurinol are not uncommon. Actually, I believe they’re almost expected as the old crystals lodged in the joints dissolve. In all likelyhood your consumption of alcohol is purely coincidental.

    It’s encouraging that your flare up didn’t last as long before as that’s usually what happens as your old crystals dissipate.

    Keep doing exactly what you have been, colchicine & Naproxen during flare ups and stay on the Allopurinol. The old crystals will eventually dissolve and no more flare ups as long as your uric acid level is below 5 mg/dl.

    I’m sure Keith has much more useful information to contribute but based on my experience you are on the right course so keep at it !

    Cheers,
    Ron

    #22115

    Paul
    Participant

    Cheers Ron your response is welcomed. Still can’t get past the alcohol and gout attack being linked but I’m a little less paranoid about it. Doctor again tomorrow. Gonna ask for allopurinol dosage to be increased. Will report back. Hope Keith is ok. Talk to us buddy. It may help.
    Paul

    #22120

    Keith Taylor
    Participant

    I’m fine, thanks Paul. A little touch of depression, but nowhere near as bad as it has been.

    Let me go through your points:

    1. Alcohol. 2 out of 3 drinking sessions didn’t cause a gout flare, and I agree with Ron’s view. But, that’s not really the point.
    If you believe alcohol is causing the attacks, then do something about it:
    a) Don’t drink.
    b) Day before a planned session, start preventative colchicine. 1 in the morning, and 1 at night. No more! Maybe 1 a day. Morning after, continue with pain relief if required.

    I’d go for option b, but remember, excessive alcohol can encourage dehydration, so take water immediately afterwards, and asap following day.

    2. Missing work. I always say, if you fancy a day off, any old excuse is good enough. But gout should never be an excuse for missing something you really want to do. If you want to improve your pain relief, tell me, and we can discuss a better pain relief plan (separate topic, as this is getting too long).

    3. Uric acid from .66mmol/L to .52 mmol/L. That shift means absolutely nothing as far as treatment is concerned, and uric acid crystals are continuing to build up. I’ve said as much as I can think of about uric acid targets earlier in the thread. What I really don’t understand is why 0.34 is a target? If I knew the reason for that target, I could discuss it sensibly, but it makes no sense to me.

    4 “So Keith, was it the booze? Was it likely to happen anyway? It’s now 6 weeks into the allopurinol. ”
    Probably not! Yes! At this stage, all you are proving is that you can tolerate allopurinol. It has had no significant effect at the current dose, and so your gout is six weeks worse.
    Sorry

    To summarise: You need a uric acid target for the next year that allows you to dissolve old crystals at a rate that is acceptable to you. You need effective gout pain control to help you during that period. If alcohol remains an issue, deal with it by abstinence or preparation.

    I’m not sure if this is sounding too blunt??

    I think it’s time to reflect what are your important immediate and long term goals. Then we can plan how to achieve them. I.e. be clear about what you want, and I’ll do my best to help you get it.

    #22123

    Paul
    Participant

    Hi Keith, glad you’re well.
    Blunt is fine.
    So I’m confused again. I still feel the alcohol accelerated the attack, perhaps due to dehydration like you said. I’m less paranoid about it after what you and Ron have said though. My doctor has still insisted that I stay away from booze.

    Missing work? I had no choice, my foot was killing me and I need to walk around for at least 5hrs out of 8 hr shift. Even with Naproxen I still couldn’t walk? What other painkillers are there?

    Uric acid levels. Can you advise what is the comparison between the two scales in America and England for me please?

    My gout is six weeks worse? This really does upset me and I don’t understand. The level has gone down, not enough, but down, I am on allopurinol that is doing nothing for me? Do you mean at the current dosage? If the levels are down even slightly is this not a good thing? I can tolerate allopurinol? If I can but it does no use then what’s the point?

    I’ve been back to my doctor who has stated that the 0.34 target is a safe level that will mean I do not have gout attacks if kept under this level. I asked if he would increase my allopurinol dosage and he said not to. He was concerned about side effects, (I have had none btw). He also stated that he wanted to see how the uric acid levels had changed on this dosage (300mg) daily. My actual levels were 0.69 in April, 0.63 in july and 0.52 in sept. All were measured before my course of allopurinol started. September level was after abstaining from alcohol. I have another blood test on the 4th of December when I will have been on allopurinol for 9 weeks. I will post results. I will also see my doctor again around this time.
    I need some advice on what to say to him if I need to increase my dosage which is what I think you are telling me.

    My long term goal is to never have an attack again.
    My immediate goal is to reduce the chance of having an attack and to be able to work if I do have an attack.
    My alcohol intake has reduced dramatically and I will still enjoy the odd pint or two here and there despite my doctors advice. I believe you when you state it’s not down to the alcohol. The benefits of not drinking currently outweigh the desire to get p*ssed.

    Thanks for the advice again. Hope to hear from you soon.

    #22127

    Keith Taylor
    Participant

    Thanks Paul for your detailed response.

    Alcohol is always a tricky subject when related to gout. The science is very confusing, with some studies linking alcohol to increased gout attacks, and others saying it has little or no effect. My problem with all these studies is they are just statistics. What really matters is the effect on you as an individual. Even then, what is more important is the effect on your treatment plan.

    As far as your treatment plan is concerned, quite frankly it’s a mess. Your doctors ought to be aware that the British Rheumatologist Guidelines put 0.30 mmol/L as the safe maximum. They also state that a lower target is advised in the early months of treatment in order to encourage dissolving old uric acid crystals. When these guidelines were published, and later joined by similar American guidelines, I thought that gout treatment would improve dramatically. Sadly, it hasn’t, because most frontline doctors are ignorant of the professional guidelines.

    I honestly believe that the only thing that will wake these people up is a few well-publicised negligence cases. But that doesn’t help you now, Paul. My best advice is to ask your doctor to read the rheumatologist guidelines. These are widely available online and on my website via the search box, but it’s your doctor’s job to read them, not yours. Tell your doctor that you want a long term target of less than 0.30 mmol/L and a short term target of “as low as possible” The UK maximum recommended dose for allopurinol is 900mg per day. I can testify that there are no bad effects from that dose. Rheumatologists suggest that higher doses are safe under medical supervision, but you probably won’t need that.

    I’m sorry if I upset you about your gout getting worse, but this is the fact that stupid doctors need to understand. There is a point at which soluble uric acid turns to crystals. Anything below that is safe. Anything above that is dangerous. I know that less crystals will form at 0.52 than at 0.66, but that is not a particularly good thing. It might mean that it takes slightly less time to recover, but you should be recovering now. I’m struggling for words to describe how annoyed I am about this. Doctors need to realise how dangerous it is to have uric acid crystals in the body. Unless uric acid is lowered below the crystallisation point, treatment is useless.

    So, your gout treatment plan needs to be lowest possible uric acid for at least a year, then relax allopurinol dose to maintain no higher than 0.30mmol/L (the rheumatologist’s maximum). You need a minimum of 2 weeks between allopurinol dose changes to get accurate test results. Anything beyond 6 weeks means you or your doctor aren’t taking gout seriously.

    I don’t know if this helps, Paul, but I had to see 3 doctors before the 4th one realised that everything I said made perfect sense. I was prepared to demand to see a rheumatologist, but fortunately I didn’t need to do that. 75% of UK doctors have no idea about gout, and our American GoutPal members have shown it’s a similar situation in the States.

    Once you have that plan, the only other concern is dealing with gout flares until the majority of old crystals have dissolved.

    The first step is optional, as not everyone can tolerate colchicine. If you can, then for 2 weeks after each allopurinol dose increase, take a colchicine at bedtime. This is a preventative measure that stops most gout flares, but sometimes they still happen. Also, you have to be prepared for attacks outside the 2 week period. If you feel any gouty twinge in the morning, take another colchicine. Maximum 2 per day. Colchicine does not help swelling or pain. It just inhibits inflammation by poisoning your immune system. Fantastic with care, but not for everyone.

    To tackle the inflammation, your naproxen helps. I get a bit confused about naproxen dosage because there are naproxen sodium, and controlled-release versions. My best advice is to get a prescription for the maximum dose, and take as directed. For safety, I recommend naproxen as required, rather than as a preventative. Take the first dose with your early morning colchicine.

    Like all NSAIDs, naproxen reduces pain by reducing inflammation. However, this can take a few hours, or even a few days. To get on with your life, you need to support naproxen with a pain blocker. Paracetamol is my choice, but your doctor or chemist can advise other safe alternatives that are compatible with colchicine and naproxen. Never take different NSAIDs together. Paul, you should get a prescription for the maximum dose, as we both know how debilitating the pain is. Take the paracetamol (or alternative) between naproxen doses. I do understand how difficult it can be to face work when you’re in agony. However, I also found that inflammation and pain tend to resolve quicker if I kept mobile. I have to say though, rather than doing a proper job, I was mostly sat at a desk! πŸ˜‰
    Obviously, it’s a personal choice, but I believe my 3-pronged fight against gout pain allows you to function. To me, it felt better to be active, rather than moping about feeling sorry for myself.

    As for your other points:
    There’s a handy reminder about uric acid measurement scales in the right-hand sidebar, where it says “Stop Gout With Safe Uric Acid Levels”. There’s a link to more details, but if that doesn’t help, just ask for clarification.

    I hope I’ve described what you need to do about achieving your goals. Again, if I need to clarify, please tell me.

    That just leaves alcohol.

    I think it becomes a much smaller issue, once you have a viable treatment plan. That plan gives you two options:
    1. Wait a few months until all chance of a gout flare has gone. Then celebrate πŸ˜€
    2. Recognise that gout attacks happen during the first few months of treatment, and rely on your pain control plan. Celebrate now! πŸ˜€

    Whenever the celebrations start, let me know. If I can, I’ll be down the ‘Pav Tav’

    #22134

    Paul
    Participant

    Hi Keith,
    Thanks for the response but how do you know about the ‘Pav Tav’? You’re scaring me now as I was only in there the other day!

    I’m kinda unsure where to go now. As much as you say my doctor is ‘stupid’ and/or unknowledgeable about the subject of gout, I actually like the guy and trust him as much as someone I’ve never met but only communicated to online. I do respect what you say and your feelings towards the medical profession but I’d rather work with both of you to get results and I hope that is the way I’m heading. It’s very difficult to say to your doctor, ‘Do you really know what you’re talking about?’ as, well they are a doctor.
    I will try and explain your point of view to him, I may edit your response above and show him if you don’t mind? I’ll look for the notes you describe and give him a copy if he wants them. I don’t want to swap doctors but ultimately I will if no improvement of my gout happens. I’ve yet to post any uric acid readings taken since my allopurinol course started, so hopefully I’ll have better news at the start of December when I have a blood test. (does this change anything?)
    The alcohol intake is beyond just abstaining for gout purposes now, so I’ll enjoy the odd pint here and there anyway. When I reach my goals I’ll definitely hook up for a pint with you.
    Thanks again for your help, it really is appreciated. As confusing as the whole subject is, I want to achieve my goals and know that it is your goal to help.

    Cheers, Paul

    #22135

    Paul
    Participant

    p.s. can you link me to the British Rheumatologist Guidelines please, I can’t find them.
    cheers

    #22137

    Keith Taylor
    Participant

    Wow, thanks Paul. You’ve made me realize I’m coming across as anti-doctor, which is not at all helpful. I’ll change my ways, because you are absolutely right. Our doctors help us stay healthy, and understand more than I will ever know.

    I describe the British gout guidelines at http://www.goutpal.com/gouty/gout-information/gout-pdf/gout-management-recommendations-uk/ which links to http://www.goutpal.com/wp-content/uploads/2009/12/gout-management-recommendations-uk.pdf at the top of the page. It’s hard to believe it’s almost 9 years since these were published. They are a great guide to better gout management, but really only the start. Things have moved on since they were published, and what really matters is a good personal plan. I hope I can work with you and your doctor to get the right personal plan for you. Please look at my response to Kevin yesterday ( http://www.gout-pal.com/gout-pal-forum/please-help-my-gout/have-been-taking-300-mg-daily-allopurinol-for-over-a-week-now/#post-22132 ). Though the guidelines provide a framework, there are several points that require personal choices. I believe it is a question of making logical decisions within this framework. I hope the 4-phase approach helps you and your doctor breakdown the big gout management problem into manageable chunks.

    Thanks for encouraging me to think more positively, Paul. I’m not yet certain how I can improve my responses to be more helpful, but you’ve definitely shown me that I need to work harder at promoting the doctor-patient relationship.

    As for Brighton… Many years ago, I worked in London. One of many highlights was weekend trips down to Brighton. I absolutely love the place. If I had an ounce of sense, I’d hop on the train now. On the other hand, I’ve got fantastic family here in Yorkshire, with a date at my sister’s tonight, and a massive family party on Saturday. Brighton’s gonna have to wait. But hopefully not for long.

    #22139

    Paul
    Participant

    Hi Keith, Once I’m attack free we should have a pint in the pav tav for old and new times sake. Brighton is indeed a great place to live.

    Thanks for the link. I’ll try and trawl through it later.

    Does it make any difference that I haven’t yet posted my uric acid levels since starting on the allopurinol?
    Blood test next week, results on the 11th. I’m kinda hanging on to this date for some positive news. In my mind any decrease in uric acid levels will be a good thing, but what level should I realistically hope for?

    I will ask about upping the dosage on the 11th as well.

    Thanks again, Paul.

    #22149

    Paul
    Participant

    Update. Had another gout attack. Feared the worst but it was actually ok. Took the usual pills and the pain subsided within three days! This is the least amount of time it’s ever lasted.
    Had blood test on Friday. Will post results next week. It’s a really weird feeling to have an attack and yet feel pleased it didn’t last so long.
    Could it be the pills are working? I really hope so.
    Merry Christmas everyone.
    Paul.

    #22151

    Keith Taylor
    Participant

    Now, that’s what I love to read!

    Still a little gout, but you know it’s getting better. I remember that feeling with happiness.

    It’s gonna be a great Christmas, Paul. πŸ™‚

    #22161

    Paul
    Participant

    Blood test results: Uric acid levels now 0.31
    It’s been 9 weeks since starting allopurinol. I couldn’t be happier.
    Doctor said to stay on the 300mg dosage and that my levels were now safe. He still maintains I should not binge drink alcohol but agrees a pint here and there will not hurt. I’ve asked when I should return and he said unless I was suffering and kept taking the pills, not for a year.
    I feel amazing. I’m going to stick to the diet, less meat, more veg, lots less alcohol, plenty of water. I’m also gonna be less paranoid about diet and alcohol.
    Thank you Keith for all of your advice. I’m not sure if this journey is quite over yet but I’m pretty sure I’m heading in the right direction. That has a lot to do with your help and I’m forever grateful.
    I reckon you’re going to advise to keep on with the pills and get back to the doctor for a blood test a lot sooner than a year later. Trust me I will but for now, I’m off out for a pint.
    Merry Christmas friends, I feel your pain but as today suggests, it’s gonna be alright. πŸ™‚

    #22168

    Keith Taylor
    Participant

    Absolutely fantastic news, Paul.

    Sensible doctors will always advise against binge-drinking, but it has more to do with general health than gout.

    Please remember to get that check-up in a year. It’s best to have uric acid, kidney function, and liver function tested at least once a year for all gout sufferers. Better safe than sorry.

    I know you’re going to have a great Christmas, Paul. πŸ™‚

    #22188

    Paul
    Participant

    Thanks Keith. One more question, should my allopurinol dosage ever be reduced now?
    Merry Christmas to you, thank you so much. I will donate to the site when I get to a safe portal.
    Still can’t believe it’s going to be alright!

    #22194

    Keith Taylor
    Participant

    Believe it, Paul! You’ve worked hard to control your gout, so now’s the time to reap the rewards.

    As for allopurinol, it’s important to get a uric acid test at least once a year, forever. Wisest to get kidney function test and liver function test at the same time – most UK practices include these automatically, but it’s always best to check.

    I was hooked on channel 4 last night, so…

    Live long and prosper \\// πŸ™‚

Viewing 17 posts - 19 through 35 (of 35 total)

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