October 3, 2015 at 3:52 am #21936
My name is Paul and I have gout. I’ve been following this forum for a few months now and it’s helped so much that I thought I would join and hopefully help others with this often misunderstood condition. I’m happy to answer any questions anyone might have that are born out of my story.
To cut a long story short, ( I’ll expand if anyone wants me to), my story is this:-
At the end of last year I suffered an attack of gout as diagnosed by my doctor. This lead to recommendations from the doctors to change my diet, alcohol intake and lifestyle. The problem was no specific diet was specified, the details of how much alcohol I could drink was inconclusive and some of the lifestyle changes were impossible. I felt that as professional as the doctor was the condition of gout was one which she wasn’t particularly knowledgeable about. When you sit in a doctors office and they start to ‘Google’ gout it makes you wonder.
I was prescribed allopurinol. I ignored this and decided I would change my diet, drink less and try to control my gout flares in this way. It didn’t work.
I have had three attacks of gout this year and have arrived now at the point where I have drastically changed my lifestyle to fix this problem.
After the third attack of gout in one year I was advised to give up alcohol and change my diet in order to have a total of 8 weeks without and attack before my doctor would prescribe Allopurinol. I did this and started taking Allopurinol last week.
So far….so good.
Please feel free to comment, ask questions or simply read.
Paul.October 4, 2015 at 12:09 pm #21941
Understand what you are going through Paul,the lifestyle changes are hard,I too am trying to get my uric acid level down low enough to go on allopurinol. I agree about the doctor mine seems to guess at gout and even started me on allopurinol 390 mg a day whils uric acid level was raised, this caused a massive gout attack. Try monmerency cherry capsules daily too and lots of water. Persevering is what I am doing to try and win this battle. PhilOctober 5, 2015 at 5:55 am #21943
Hi Phil, I’m drinking loads of water but I haven’t tried the cherry capsules yet. Cheers for the advice. I’ve given up drinking alcohol and to be honest this has worked really well. Difficult to do but ultimately rewarding. I’m on Allopurinol now and I’ll be interested to see the effects on my acid levels after three months.
Good luck and I hope you can take the allopurinol soon.October 5, 2015 at 7:43 am #21946
Hi Paul, it’s nice to read your gout story. I hope we can agree to differ on our approach to alcohol.
You said “I’ll expand if anyone wants me to.” I’d love to know more about your uric acid levels. Have you and your doctor agreed a target?October 5, 2015 at 9:23 am #21949
Hi Keith, As I’ve found out all cases are individual. I believe you state once your gout is under control that sufferers can eat and drink almost anything ‘in moderation’. I hope this will be the case for me in the future. I do however believe that the alcohol can make gout a lot worse than it needs to be. The benefits of not drinking for me have been amazing. Not only is my gout, so far, under control but I sleep better, have lost weight and feel better generally all round. I wasn’t a heavy drinker but definitely drank more than the recommended amount.
Do you Keith, think that alcohol intake should be controlled or not? It was your thread on drinking alcohol that lead me to this site BTW; and yes…I copuld murder a pint!
My acid levels were at 6.6 and my new doctor has stated he wants to get below 3.4. I am now on Allopurinol 300mg daily and I have one more week of taking colchicine before he has told me to stop taking it. What do you think about this?October 5, 2015 at 9:33 pm #21951
Very interesting, Paul. You’re absolutely right that all cases are individual. There is one ‘rule’ however, that I think applies to everyone. We should all eat a healthy balanced diet. That means either vegetarian or Mediterranean style, where meat consumption is limited. That’s not just a gout consideration. It applies to disease risks for heart, stroke, diabetes, cancer, and more. There’s overwhelming evidence for this, neatly summed up in Unhappy Meals. My interpretation of his slogan is Eat Food. Sufficient. Especially Plants. For no other reason than it makes a nice acronym. 🙂
I became aware of this after I took control of my gout. I was happy that I’d beaten one disease, but didn’t want to succumb to another, especially as there’s a history of heart disease on my Dad’s side. So, in my world, alcohol is just another item in the diet. As such, too much is definitely not balanced. However, I think the choice of whether you drink or not is exactly the same as meat. Too much is definitely unhealthy, but that does not imply that none at all is best. For every report that suggests alcohol abstention is bad for gout, there’s another that suggests moderate drinking has little effect. That’s especially true of moderate red wine intake. This might be explained by the different types of gout, and their genetic roots. We know that some gene defects cause uric acid over-production. Different genes affect uric acid excretion. I’ve yet to read a gout study about alcohol that makes this distinction, and categorizes subjects accordingly. Maybe it’s wrong to speculate, but I can’t help wondering if this is linked to variations in results between gout studies in different countries.
Irrespective of my waffling, it always comes back to the individual. If anyone is concerned about their alcohol consumption, I recommend alternating months with normal consumption and abstention. You should get uric acid tests at the end of each test period, and repeat this several months. You should also make a note each day of your gout pain, from none to screaming agony. Science says repeat for 50 months to be confident in the results, but most people would get a clear picture much earlier. A less scientific way would be to simply keep a diary of gout pain and alcohol consumption. This misses the important uric acid element, but might still be useful. Personally, from my own experiences, I found that drinking had little or no effect on my gout. It has to be an individual decision based on your own reactions, and that is true of all aspects of gout diet.
Paul, I’m concerned about your final paragraph. I strongly suspect that your numbers are for the millimole scale, which is most common in the UK. In that case, 0.34mmol/L falls within the acceptable range of 0.3-0.35. However, I strongly believe that whilst this is acceptable once gout is under control, it is not low enough for the early months of uric acid lowering. My logic is backed by some of the rheumatologists recommendations, but I don’t think they are clear enough. This forum is full of tales of woe during early uric acid lowering. That period of uric acid crystal dissolving is something we all have to go through. The pain can be minimised if treatment is managed properly – like with your preventative colchicine. The single most useful thing is to increase the dose of allopurinol, which reduces the time period we are at risk of a gout attack. It’s blindingly obvious to those who examine the facts, but inescapably hidden to those who rely on 20th century custom and practice.
I strongly recommend that people consider maximum allopurinol for a few months at the start of their uric acid lowering treatment. I had to visit 4 different doctors at my group practice until I found one who appreciated my logic. That 4th doctor is now my medical hero. I noticed he’s also very good with other health issues, and always seems to start with his patient, not his medical school notes.October 6, 2015 at 4:30 am #21953
Keith, interesting. I am indeed in the UK and my knowledge of the uric acid level measurements are not particularly good. I have just posted what I thought the doctor told me. He didn’t talk specifically about the measurements used, just gave me numbers.
You say 0.34 is not low enough in the first few months? How low should it be? Also to consider increasing the allopurinol dosage? Is 300mg not enough? I thought it was a quite high level dosage or am I wrong?
Can I also ask about colchicine? My doctor has stated I should stop taking it after 14 days of taking it alongside allopurinol. I’m slightly worried by this as for the whole of the 8 week period leading up to when I could take allopurinol, I was taking one a day to stave off an attack. I’m worried that stopping taking it could result in a flare up? What do you think?
The whole alcohol as part of your complete diet, I get. I just wanted to point out that for me, giving up was one of the best things I ever done. I do want to drink alcohol again but found the positive benefits of giving up were truly amazing. It’s been 10 weeks now and as much as I could murder a pint, I’m also inclined not o as I feel so good. I will however drink in moderation after a couple of weeks on the allopurinol. My doctor made a good point when I asked if could drink alcohol again. He said to me, ‘You’ve come into my office and just told me that after stopping drinking, you have lost weight, not had an attack of gout and feel better in general. Now you are asking if you can drink again?’ It was a pertinent question that made me consider why I wanted a drink. He then told me pretty much what you have said, that having a couple of drinks will not affect my condition but excessive use would. It’s worth noting that I have changed my diet as well. Trying to eat two vegetarian meals a week and I’ve cut my portion sizes down and tried to eat less red meat.
Thanks for getting back to me, I hope this help more gout sufferers deal with the confusion that gout can cause.October 7, 2015 at 12:21 am #21954
Hi Paul, I’m going to start with your paragraph about alcohol and diet.
Those words are amazing. You got it right with your take on “what suits me (Paul).” Your doctor got it right with his take on “why would you?” Anyway, you have all the advice you need to go forward in the right way. Probably something like a real and lasting improvement in your diet, and your health, for now. Then when that pint needs to be murdered, enjoy it! But don’t go on a killing spree!
On the veggie stuff, I made similar changes to you. I started slowly finding favourite veggie recipes, and gradually reduced meat intake. Hardest was stopping processed meats, but I find it easier once I’ve read the labels (Anyone for a Potassium Nitrate And Sodium Ascorbate sandwich?). I now enjoy cooking with veg. I hardly buy any animal flesh these days, and mostly fish. I’m not vegetarian, but I save my meat treats for visits to daughter/sister or anyone else who wants to treat me 🙂
On colchicine, the advice given to me was colchicine for 2 weeks when allopurinol dose started or changed. Then keep on hand for the first hint of a flare. That “first hint” is very important. Once an attack takes hold, colchicine is next door to useless, though it might limit a 5 day flare to 4 days if you’re lucky.
Just for the sake of completeness, my pain control method is:
1. One colchicine at first sign of a flare, with gout strength NSAID.
2. 2 hours later, if pain limits mobility, prevents sleep, or lowers quality of life beneath the endurable, take paracetamol, as directed by your doctor.
3. 2 hours later, if swelling persists, 1 more colchicine plus NSAID. That’s the last colchicine of the day, because any more than 2 per day is foolish.
4. Repeat cycle of paracetamol and NSAID as long as you need it up to the maximum dose.
Clearly, that’s something personal, so best to run it by your doctor.
Finally, the allopurinol. I’ll try and stick to the facts, but I’m sure my opinions will sneak in somewhere 😉
The finest gout brains in the world came up with “British Society for Rheumatology and British Health Professional in Rheumatology Guideline for the Management of Gout” in 2007. Bear in mind that this was state-of-the art 8 years ago based on research that had been published up to that date. In my opinion, it’s the starting point for great gout management, not the Holy Grail (told you 😉 ).
I just noticed that they recommend the preventative colchicine for up to 12 months. I’m guessing they have to consider unresponsive patients and slow doctors 😉
Fact 1: “A long-term treatment plan is needed for each individual patient,
taking into account the rather limited amount of good data
That is an important break from the concept that there are set ways to treat gout. It has to be individual.
Fact 2: ” One rather strict goal has been to reduce plasma urate
concentrations to, or below, the median concentration for men
. In the UK today this is <300 μmol/l (using a specific uricase
assay; non-specific colorimetric methods give higher values). The
goal of this is to prevent acute gout, tophus formation and tissue
damage. Reduction in plasma urate to this degree, has been shown
to be associated with reduction or elimination of intra-articular
microcrystals of monosodium urate that otherwise persist even in
300 μmol/L is the same as 0.30 mmol/L (and 5mg/dL). And I can’t resist, but in my opinion, I think doctors should avoid being rather strict with gout, and go all out for being downright mean with it. Since these guidelines were written, they’ve absolutely proved that going for zero controls gout in weeks, if not days. Why settle for less 😉
Fact 3: “Initial long-term treatment of recurrent uncomplicated gout normally
should be with allopurinol, starting in a dose of 50–100 mg and
increasing by 50–100mg increments every few weeks, adjusted if
necessary for renal function (see further), until the therapeutic target
(SUA <300 μmol/l) is reached (maximum dose 900 mg).”
Now, if .34 is your target because you have kidney problems, then I’m truly sorry about that, and the tone of some of my responses. In my defence: “nobody said” [brief pause for profile check]
No, I’m pretty sure I’m on safe grounds here. In my opinion, 0.34 mmol/L has been plucked out of the air based on a spurious lab result, or some other bollocks that has nothing to do with good gout management. 😉
Sometimes it beggars belief. “Yes sir, we can cure your gout in a few weeks with just three of these lovely 300mg allopurinol pills each day. But I’m only letting you have one, cos I’m a bastard” 😉
I’ll finish with a serious note, Paul. I really hope that nothing I’ve written here has caused any offence, or confusion. I’m truly committed to help you find the quickest, least stressful way to manage your gout. I’ve raised a few points, and you can probably see that I have strong feelings about some of them. I promise to respond to any of your concerns the best way I can.October 7, 2015 at 1:00 am #21956
To Paul, and anyone else who is juggling several gout issues at once, will Gout Is Personal help?October 7, 2015 at 5:36 am #21957
Hi Keith, I am not offended by anything you have posted.
I have no kidney problems as far as I’m aware. Are you saying that the uric acid level to aim for is Zero? Why didn’t the doctor start me on a lower dose of allopurinol? Its a good thing that I’m on 300mg per day or is this too little?
I think the point of aiming for .34 is to be able to achieve this level, of course if my doctor had said I should aim for zero, I would have just accepted his advice as I’m no expert. A bit confusing I’m sure you’ll agree.
You talk of diet and I’d like to ask if there’s any foodstuff that should be avoided at all cost? I’ve heard/read shell fish and offal should be avoided?
Do you think I should see my doctor again before three months as recommended by him and ask to go on a higher dosage of allopurinol? I know it’s difficult for you to judge at times without medical records but I appreciate your opinion as you seem far more knowledgeable than any doctor I have dealt with. Interestingly enough including my sister! (the doctor).
I guess what I need is a few home truths on best advice for gout treatment in a general format, i.e. what is good advice for all sufferers. I know you advocate an individual plan and I accept that but going against my doctors advice is a dangerous thing to do, at least in my mind it is.
Thanks for your comments and thanks for the site. It could be the best gout advice forum around, I’ll let you know if/when I ever have this horrendous condition under control.
For now, I’ll carry on without any alcohol and keep you updated on my progress. I’m sure I will need some more advice soon.
Cheers, Paul.October 8, 2015 at 7:06 pm #21961
Let me summarize my gout experience. I have had on and off gout attacks over the past several years, mostly in my left big toe. Very painful, very debilitating. However, the beginning of this year saw me experience excruciating pain in both knees and ankles as well as my toe that I have never experienced before. I was at wits end until I found this site and decided that Allopurinol was the way to go. As a side note, I have always tried to eat healthy, that is a lot of fruit and veggies and limiting my meat intake. However, I have always enjoyed my alcohol in somewhat moderation. ????
I started on 200mg allopurinol and my doctor refused to increase it. My last uric acid test in I believe was April was below 5mg/dl so since I’ve been with her for the past 25 years so I decided to stick it out.
Well I’m happy to report I have not had a major flare up since, and after having abstained from alcohol for the first 3 or 4 weeks I’ve been enjoying 3-4 pints a week as well as wine and the occasional scotch. I’ve also gone to Vegas twice since then where I have WAY overdone it both on the food and booze front including an abundant amount of oysters and mussels which I love.
My point is that if you get your uric acid level at an acceptable level and keep it there and the old crystals that have built up in your body dissolve so as to not cause any flare ups then you should be able to enjoy all foods and beverages as long as you don’t overdo it long term as to harm your overall health.
Gout does not need to define you. You can take control.
Best of luck,
RonOctober 9, 2015 at 9:39 am #21962
Hi Ron, cheers for the encouragement. Much appreciated. I hope I’ll be able to enjoy alcohol again and all the food I’m avoiding now but want to eat again. I’m confused about acceptable levels of uric acid. You say less than 5 but Keith says zero should be the aim, I think. I like also to know which food stuff to avoid. I know it’s different for all but there must be some generic advice for all.
I work in casinos Ron so maybe we’ll meet for a beer in Vegas one day!
Cheers, Paul.October 13, 2015 at 2:31 am #21967
Ron, it’s good to read your thoughts. So much of what you write aligns well with my experiences. I guess we’ve both been ‘through the wringer’ and can enjoy the benefits of life without fear of the next gout attack. It’s fantastic that you take time to encourage other gouties.
I well remember the doubtful days when, like Paul, you just don’t know what to do for the best. Sometimes I get ahead of myself and forget to listen properly. Paul, let me try and address the points that you’ve raised now.
Uric Acid Target
The rheumatologists are clear on the long term target. 5mg/dL. Outside USA, that’s 300 μmol/L or 0.3mmol/L. Different scales in different countries make this slightly more complicated than it should be. But, scale issues aside, and leaving out complications of kidney disease, and prolonged exposure to cold, it’s a simple message. 5 is safe.
The guidelines on the early months of treatment are not so clear. There are hints that going lower is better, but no definite objectives, other than to treat the patient as an individual. In my case, I believe that the lowest possible level is the best target until I’ve gone 6 months without a gout flare. Every gout study I’ve read about uric acid crystals supports that objective, but it is not spelled out in the guidelines.
Paul, I hope that explains why I say zero is the best target short term, but 0.3 mmol/L is usually a good target for life. I’m hedging my bets with a ‘usually’ there, because it should be set by personal circumstances. If you’re regularly out on the Channel with Hove Deep Sea Anglers, you need a lower target, especially during the winter months.
I think the second biggest weakness with professional guidelines on both side of the Pond, is they don’t distinguish clearly enough between maintenance treatment once gout is controlled, and intervention treatment when years of excess uric acid must be reversed. During intervention, I cannot understand any reason for not aiming for zero, yet the professionals have not yet thought this through.
The first weakness of the guidelines is that most front-line healthcare professionals have never heard of them.
Paul, you ask why you weren’t started on less than 300mg allopurinol. It’s another symptom of not keeping up with best current advice. I don’t like to be critical of doctors who have to know about thousands of diseases. I’m only keeping up with one, and I still miss new developments. Anyway, it’s a safety issue, and one that clearly does not affect you, so best to forget it, and focus on what to do now you know that allopurinol is safe for you.
Foods To Avoid
Moving on to your next point. Individual food items are not important. Balanced diet is essential. Avoid chemicals (seriously – read the labels). If you do want to consider individual foods, you can only do it sensibly if you know whether you are an under-excreter or an over-producer of uric acid. It’s an interesting subject, but most of us simply need to eat a healthy balanced diet. If it’s balanced, individual foods don’t contribute enough to worry about.
You’ve got me thinking about offal and seafood. I am now developing a theory. What really matters for those people who need to limit purines, is not the purine count, but the ratio of purines to protein. I think that should be a separate discussion, so if anyone wants to start it, I’ll be happy to join in.
Uric Acid Lowering Treatment
Next, I think 3 months is far too long between appointments during the first stages of gout treatment. It just prolongs the agony, and anyone who truly understands the debilitating effects of excess uric acid would see that. The most effective schedule is two weeks, because you need that time for accurate assessment of blood test results. Realistically, 4 weeks is probably best. An important part of this is kidney and liver function test results. For most people, 900mg allopurinol per day is perfectly safe. However, it makes sense to phase this. So, you should get the tests, and increase the dose every 4 weeks, in the safe knowledge that blood test results confirm that everything is proceeding as it should.
Gout Doctor Relationship
Paul, you are absolutely right not to go against your doctor’s advice. It’s essential for me to encourage doctor and patient to work together on their own personal gout treatment plan. My role is to provide evidence of better methods, if I can. I don’t like to give lots of research links to back up my thoughts, because doctors have far better facilities than I have. They can check the facts if they need to, but I will always provide specific references if you ask me to. The most important thing for me, is that you have a good relationship with your doctor, where you both understand why the action you are taking is the best in your situation. For example, you mentioned a target of 0.34. You don’t understand that. I don’t understand that. If your doctor explains why that is the target, we can either accept it, or present arguments why a lower target is better.
What Next For Paul’s Gout
I’ve got some catching up to do with other posts, then I’m going to take a serious look at your personal response in http://www.gout-pal.com/gout-pal-forum/please-help-my-gout/gout-is-personal/#post-21958October 14, 2015 at 6:21 am #21976
Thanks again for the advice. Your help means a lot to me. It’s becoming clearer the more we communicate and I thank you for that.
I’m now two weeks into the allopurinol pills and have stopped the colchicine for 3 days now. I’m slightly paranoid about stopping the colchicine as I’ve been taking it for two months now with no ill effects and no gout flares. I plan to stay off the booze until the end of the month at least. I must say I’m really tempted to have a beer but I’m also paranoid about it. I think I’d like to see how I am with just allopurinol without the colchicine for a couple of weeks first. You’ve made me less paranoid about food but I’m still steering clear of high purine rich food wherever possible.
I’m going to go back to my doctors sooner than he suggested to speak of what I’ve learnt here but I’m still going to leave it until start of December.
Thanks again. I’d love to hear your opinion on this post.
Cheers, PaulOctober 14, 2015 at 9:52 pm #21982
It’s nice and positive, Paul. Just one point.
“I’m still steering clear of high purine rich food wherever possible”
I tried to explain purine consumption and gout to Dan, yesterday. As it’s Facebook, you have to keep clicking ‘Read More’ to get the full picture, but it’s very relevant. Gout pain has nothing to do with today’s purines. It’s a coincidence that most high-purine food is high in Free Fatty Acids (FFAs), and FFAs are the most likely candidate for gout flares after meals. The role of alcohol is unclear, but it is recognized as an inflammatory trigger in some studies, so that could be significant. But, avoiding those 2 potential triggers doesn’t free you from risk of a gout flare. In my conversation with Dan, we also identified emotional stress, physical trauma, low temperatures, and falling uric acid levels. There may be others that spring to mind, but the last one is the killer.
Anyone on a uric acid lowering plan has to be aware of the risk of a gout flare. You can ruin your life trying to dream up ways to combat all triggers. Or you can be vigilant, and swing into action at the first sign of a twinge. There is no reason to stop colchicine if the idea of a flare frightens you. If you do stop it, set an hourly reminder to be aware of your body. Take a tour in your mind from head to toe, flexing joints. Carefully feel around your joints. Any unexpected swelling or twinges? Take a colchicine and naproxen dose. Fight it. Text me, if you must.October 20, 2015 at 7:31 am #22085
Cheers Keith. Thanks again.
My plan is now to visit the doctors in 4 weeks time, 4 weeks ahead of when the doctor told me to. I’ll discuss the uric acid level results with him and try and gain more of an understanding where he wants me to get to.
Why is it that all gout advice apart from here states avoiding high purine foods is the best course of action?
You also mention stress as a cause? Never heard this one before. I also read an article on gout in Japan. Link: http://www.dailymail.co.uk/health/article-3269842/For-clean-teeth-try-gargling-tea-Tannin-s-antibacterial-properties-reduce-build-plaque.html (SCROLL DOWN). Interesting?
How long after I’ve started taking allopurinol will it take for me to be fixed (on average). I’ve been on it three weeks now and am looking for some sort of timescale to judge results on. Also been three months with no alcohol. I’m having a pint this week though, can’t take much more abstinence. I’m blaming you if it goes tits up and I have an attack btw.November 9, 2015 at 1:30 am #22102
Paul, you can’t blame me if I’m not part of the drinking session. I wish I’d got the train down to Brighton to supervise you. That sea air would’ve lifted my spirits!
I like that you are taking control with the 4 week testing schedule. Is that going to be this week?
” Why is it that all gout advice apart from here states avoiding high purine foods is the best course of action?”
Easy, lazy, 1970s, sell diets, ignore reality, don’t care. Take your pick.
For the true answer, I’d have to see the context of why they are saying it. It was very common advice started 40 to 50 years ago when people thought that gout was an eating disorder. Some people still think that. Many people don’t care because they can charge for diet ‘advice’ but not for medical advice. Some doctors think it because Continuing Professional Education is for other people. Bloody hell! I do CPE and I’m not even a professional. (Before anyone says it – not even close 😉 )
And finally, the “how long does allopurinol take” question.
- How long has uric acid been over 6mg/dL?
- How much over, on average?
- How low is uric acid with treatment?
Of those, only the last one is controllable. Trials on Krystexxa, where uric acid is reduced to almost zero, proved that serious tophaceous gout can be beaten in 6 months. Your gout isn’t that bad, but you won’t get uric acid so low. Lower Uric Acid Gives Faster Gout Cure show us that uric acid crystals dissolve faster when uric acid is in the easily achieved 3-4 range. All we can say is go as low as possible. It worked for me 🙂November 9, 2015 at 1:58 am #22103
Oops, sorry Paul, I missed a bit on stress and chrysanthemums.
Trust the world’s second most annoying newspaper to omit any links to the actual research! Anyway, here’s something that shows Chrysanthemums are not the only flower for gout: Can Natural Uric Acid Inhibitors Work?
Would anyone like me to do a follow-up to include the chrysanthemum oil capsule research? https://clinicaltrials.gov/ct2/show/NCT02213562 – due to complete March 2016
I’m not sure what the latest views are on the psychosomatic aspects of gout. The main researchers were Katz and Weiner, but nothing much happened after one of them retired. Again, if anyone wants me to see if there are more recent developments from http://www.goutpal.com/the-gout/?q=psychosomatic please ask.
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Viewing 18 posts - 1 through 18 (of 35 total)