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Hi, all.
Quick resume; had my 3rd attack of gout in 10 years 11 weeks ago. I'm a 50 year old guy.
Soreness and tingling has continued since then; though there has been some overall improvement, symptoms persist. First proper blood test showed 7.8 mg/dl, second one 5.7 mg/dl.
I am shortly to travel to South East Asia for 4 months, start out in only 2 weeks now.
Advice from Doc was that as uric acid levels were normal at 5.7 mg/dl to not go on allipurinol yet, a strategy I generally agreed with at the time. He prescribed me allipurinol to take with me in case I feel the need to start while away.
I felt in may be a good idea to have the home test monitor with me to keep a track of things. Got that last week, since when I've had various issues. Test results have been as follows:
Day 1 – 5.7 mg/dl – same as GP and was very pleased.
Day 2. Previous evening had chicken and 2 small beers – 7.5 mg/dl
Day 3. Previous evening had veggie and no alcohol – 6.7 mg/dl
Day 4. Previous evening had veggie lasagne and shared a bottle of red wine with my wife – 8.6 mg/dl
Day 5 – today. Previous evening veggie and no alcohol – 6.7 mg/dl.
The day of the 8.6 mg/dl I felt worse than for some time. Recently I have had some general soreness, but nothing too bad. Yesterday, my toes (where the attack had been) ached quite badly and I felt generally not great.
I've been surprised by the large variation in results. Others on here do seem to get some variation, but not as great. There is a 50% difference between the best and the worst. This also got me thinking about blood tests generally; if they can vary THAT much so quickly can we rely on them at all ?
To be honest, I'm getting increasingly sick of this. I've tried my best to get my levels down (mainly veggie, plus lower alcohol). I seem to have some limited success if I eat no meat at all and hardly any drink, but I'm not sure I see the benefit if immediately I eat or drink something 'prohibited' the results fly upwards. I am happy to eat more veggie long term, but have no desire to go completely vegetarian fulltime. Nor do I wish to become teetotal.
I have a dilemma, therefore and would ask your views. These are my options as I see it:
1. Start taking the allipurinol now. I have the drug and am well aware of the doses I need to take and the target uric acid levels I need to get to.
2. Give it a bit longer to settle. Keep an eye on the blood scores and start allop when overseas if necessary (my doc has confirmed he is OK for me to do this).
3. Try not to go the drug route at all while overseas.
I am aware that I may get some gout flares when I start allipurinol, but consider that may be preferable to this constant dietary restriction and seemingly getting nowhere.
Any thoughts or comments much appreciated.
Your results seem to reflect your diet very accurately.
Which ever way you jump- it's up to you.
If you don't want to start meds now- then you won't want to do when away.
IMO- If you don't want meds at all- then you will have to modify your lifestyle/diet to some degree.
Nokka,
Your variations don't seem uncommon. Right now, mine have been ranging from 3.5 -5.5 after a month and a half of 300mg of AP. It's all personal preference whether you want to lower UA with a drug or lifestyle change. I'm in a similar situation as you. I don't mind eating more veggies, but am not prepared to be a complete vegetarian. For me the choice was simple, I could worry about gout every single day because I'd really have to focus on diet, or I could take 1 pill/day and not have to worry about it so much. I like eating healthy, but with gout, even many healthy foods are not good for the disease so AP will help with that. I may try and cut back to 200mg in a year or so IF I do not have any attacks, but thats far down the road. If you start AP while overseas make sure you have some Colchicine on hand to abort any potential attacks.
Stay strong
Thanks for your replies; they are much appreciated. It does indeed seem that certain things can quite radically and quickly change my uric acid measurement. Trouble is, whereas cjeezy is between 3.5 and 5.5mg/dl (which clearly is excellent) I seem to be somewhere between 5.7 and 8.6 mg/dl. (which isn't).
Trev, I think that you are probably right that it may be just about possible to keep levels round about 6 mg/dl through diet alone. I'm not sure whether the lifestyle that goes with that particularly appeals though. Of course, it may be that I get no new attack if levels don't stray too high too often; but how would I know whether that will work.
cjeezy, I have followed your posts with interest and watched the way you have reacted and dealt with the problem. Its all been very helpful, to read someone going through a similar decision making process.
You're a bit ahead of me regarding being on the drug. How, generally, have you found and are you finding things ? I have read the leaflet which comes with the drug and it doesn't mention anything specifically about things to avoid when commencing. To what extent did you change your lifestyle during the first few weeks ? I aim to stay on a quite strict diet for a while, but did you drink at all, for example ? If not, how long before you felt OK to do so ? Did you continue to exercise ? Any other measures you needed to take ?
The diet control situation is tricky, as there are many other factors in addition to your previous meal. More uric acid comes from the natural breakdown of your own meat (i.e. your body), than from what you eat or drink. There are so many factors that can affect uric acid production it is difficult to be certain that a change in level (up or down) is due to something you ate today, yesterday, or a week ago. Also, non-dietary factors can come into play.
I am increasingly of the view that, if dietary control is possible, it must be a long term project, monitoring at least uric acid, iron, and Body Mass Index. Allopurinol can help in the short term, as lifestyle changes, especially weight loss and unfamiliar exercise, can produce sharp temporary rises in uric acid.
From your recent results, nokka, it looks like you are above the safety level, but only just.
If you think you can improve dietary control, then supporting allopurinol seems a good idea. Your diet and exercise regime should follow whatever you want it to be long-term. Of course, if you decide that you prefer to stay on allopurinol then you need no gout-specific lifestyle routines beyond those that are generally accepted as healthy.
Hi Nokka,
RANGES:
The variance is by far my biggest frustration right now. While my ranges are good, I'm also on 300mg of AP. Im sure yours would fall in this range if you were on the drug too. Currently, your range might be right in the threshold you DON'T want to be in (ie: crystals dissolving, then forming, then dissoving, then forming, etc).
DIET:
My diet was fairly good before I developed gout (aside from having some beers w/friends on the weekend and eating the occasional fast food) so there wasn't much I had to change. The only major thing differently I've done with my diet is avoid red meat and limit seafood intake :(. It actually pisses me off that certain healthy foods are bad for gout sufferers. Seriously, how can you live a healthy lifestyle if its difficult to eat a balnced healthy meal?!?
PAIN and MANAGEMENT:
Originally my attack was in the right bunion area ONLY. Since starting AP, I've had some lingering pain in all kinds of my joints. espcially my knees (which I've NEVER had issues prior). I did take Colchicine for about the first week or so but stopped (2 pills daily in the AM).
AP vs DIET:
Again it's all preference and what I think may not be the right choice for another person. “At this point” I would rather take AP, live a healthy lifestyle and be able to eat foods in moderation and not worry. I always find it interesting that people are so reluctant to take this medicine. I guess the question is “whats worse for your body, high UA or AP?” While there is always a chance of side effects (even with AP), I would rather attempt to be in the majority of successful “takers” than be miserable for the rest of my life always worrying about “can I eat this” or “can I drink that” or “I hope I don't feel bad when I wake up tomorrow.” Someone can correct me if I'm wrong, but I think many of the adverse AP effects can even be reversed if caught early. I'll of course have the standard Liver Panel tests and stuff done over the years just to make sure my body is ok with the drug. If I have to be on this drug for the next 40+ years then oh well. At least my “quality” of life will be improved as I NEVER want to go back to the type of pain I had during my first attack. In terms of your “how long I felt ok to do so” question, I started returning to normal diet and exercise as soon as I started 300 mg of AP and my acute attack was over (of course I monitored my UA regularly…probably too much lol). The funny thing is that my UA is often (not always) lower after a night of a few beers than my average. Go figure. I don't think it's because new crystals forming though because I haven't been above 6 since starting AP and I tested frequently.
Again, these are just my opinmions and experiences but I hope they help you and there is a lot of good info on this board. Time and trial and error is unfortunately the only thing that will show how your life will be impacted from this horroible condition.
Great points, cjeezy.
The occasional lower uric acid reading after a few beers doesn’t surprise me. Alcohol has several effects, one of which is that it promotes uric acid excretion. Beer also promotes uric acid production thus counteracting that effect, but if you are on allopurinol the second effect will be very much reduced.
It might even be possible to arrive at the optimum beer intake to maximise uric acid reduction, but very difficult to rule out other factors. Much better experiment than many I’ve thought of recently.
I think GP is right on the money with the Iron link.
It's a known risk factor to be high in older males , like gout is.
Red meat , in particular , has a lot of iron.
If you stick to fish [skinned- purines are in the skin] and cut from red meat to white [ & less often]
– it could be enough!
IMO Don't take supplements with iron in- they nearly all have it- and it's an uneccessary addition for mature males [unless anaemic].
Even then, the uptake is low from this route – but gouties don't need any more pushes in the wrong direction!
nokka,
Let me summarize:
You've had 3 attacks in 10 years and aren't keen on going on allopurinol for life as a result. This is a perfectly reasonable assessment that I think many people would make. You are considering dietary alternatives given blood UA levels that aren't very high and might never cause another attack. Perhaps a semi vegitarian, low drinking lifestyle with spirits replacing beer can get you from here to there with never another attack or else just rare amd mild attacks. That seems a reasonable hope or even expectation. Give it a whirl.
If it turns out that you are getting more frequent attacks or have that ONE attack that you know you will NEVER allow again, then you might want to rethink the situation and allopurinol is there for you. With me I could have lived with the 3 day hobbles from pain in the arch or ankle a couple times a year but the 9 day attack of podagra from Hell told me it was time for allopurinol. THAT level of paiin was inhuman.
I have never tried any dietary restrictions because to me a meal without meat isn't a meal
so I never recommend any other than avoiding too much beer. Coincidentally, a pile of horrific pressure has had me drinkking about 3 lites of dark beer a day for the last 2 weeks…no problems! Thank you allopurinol 300 mg.So, when and if it becomes time for you to start allopurinol you'll KNOW…trust me on that.
GoutPal said:
Great points, cjeezy.
The occasional lower uric acid reading after a few beers doesn’t surprise me. Alcohol has several effects, one of which is that it promotes uric acid excretion. Beer also promotes uric acid production thus counteracting that effect, but if you are on allopurinol the second effect will be very much reduced.
It might even be possible to arrive at the optimum beer intake to maximise uric acid reduction, but very difficult to rule out other factors. Much better experiment than many I’ve thought of recently.
That's what I thought too GP, however here is the kicker; there have been times when I've had more than a few spirits or beers and levels were still very low. For example, a couple weeks ago, I was on a 3 day vacation that involved quite a bit of beer and walking. I did not test my UA while on vacation however I did the morning after I got home and had a 3.4 level. As I've posted many times before, I've tested my UA quite frequently over the past month and a 1/2 and while it fluctuates, its never (knock on wood!) been higher than 5.7 on 300mg AP. Ironically the highest my levels have been on 300mg of AP “seemed to be” during healthy lifestyle periods. This is where I'm confused. I don't drink that often, but I would think that when I did, it would shoot my levels up. Could crystals be forming still?
How long after a person eats or drinks something before they can get an accurate reading of the impact of what they consumed? How long before the food, purines, etc are out of the body to where they wouldn't effect a reading anymore? I feel a pun coming on about the last question 🙂
I missed the smiley on my experiment comment
I'm not seriously suggesting that you monitor food / drink against uric acid levels. There are simply too many factors for a one person experiment. A group average of 20 or more might show something.
There is certainly no need for you to worry anymore. Allopurinol is clearly keeping you in a safe place.
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 personally feel that though Allopurinol helps to keep the SUA levels low, the range based variations will always be there. I think, it is understandable. Our body is not static and the way SUA levels show up, it's clearly an indication that the levels depend on many factors – some short term and some long term.
Worrying too much is not going to make it better for us. For those who just get the labs done once in a month or even less frequent, they never knew how their levels were varying. The range based variations may be the natural way of the body and we may be worried just for no reason. You can't be worried about why the heart beats when it pumps the blood
Anyway, I checked my SUA levels twice today after gap of a week and the values were 3.3 and 3.9. So, my range is still 3.2 to 4.8( mean avarage is 3.7) after 6 weeks of Allopurinol 300 mg per day. 80% of the readings show under 4.
I have seen many benefits of AP, like low levels of SUA, freedom to eat, getting rid of snoring etc.. So, if one can tolerate AP, one should start it and get back to normal life quickly than waiting for long.
I've no wish to be a damp squib on the subject but occasional posters here have mentioned being on AP and still having had problems with attacks. I can't remember each event and they are rare- but from my experience with BP meds I never have 100% trust in chemical solutions as they contributed to my – Yes….Gout!!
Diet is portrayed as a complex a path, and maybe it is- but other benefits may accrue.
Conversely, meds are seen as too easy a path, though AP is hardly top of this list.
I think my broad stance on the Gout, or any other meds front is- if you really need them' be lucky'- if you can manage without them -better, but never easier.
That's why Drs get rich and 30%+ of deaths are attributable to the actual medical intervention.
I think the figure may be higher but I'm feeling generous. 😉
That said- I'm somewhat jealous of those on uroscorics -and happy with them.
It's not a bad place to be -and, with adequate monitoring the risk benefit ratio is probably better than many drugs.
Gout patients on uric acid lowering treatment fall into two groups. Those who maintain uric acid below 6mg/dL (.35mmol/L) and those who are wasting their time, effort and money.
Those who are not getting any treatment, or who are not treated adequately, will definitely experience gout attacks at some point in time. They will get more widespread, more frequent, and more painful.
Those who are maintaining uric acid levels safely below 6 (a safety margin is needed to cover those natural fluctuations) might experience some gout flares. They will get less widespread, less frequent and less painful.
My first 2 gout attacks were fairly standard affairs. Big pain in big toe, gone completely after about 2 weeks maximum. First one 10 years ago, second – not sure – but at least 6 years ago. I quickly forgot all the good diet/bad diet stuff and went on my merry way. Ate and drank whatever I wanted, without problem, though the diet was generally very good.
This one – major part of the attack subsided after a few days; but the lingering has just gone on and on. If that wasn't the case I wouldn't even be considering allipurinol. I'd put it down to something that may happen now and again and get on with my life. However, the toe pain comes and goes, knees tingle and ache, even elbows tingling. It all seems to subside for a while and then suddenly it all starts up again.
I thought this may be due to crystals melting and reforming, as cjeezy said above, hence why I bought the monitor. Indeed the monitor (and my 2nd blood test) does suggest that it is at least possible to get below 6mg/dl, though it also shows I can get some way into the more dangerous area as well. The thing I don't understand is, if I previously also went below 6 and above 6, why didn't that result in any tingling ?
I appreciate I don't have HUGE numbers, though if I do stray over 7, or even 8, at times – is that likely to precipitate an attack ? I guess there's only one way to find out…
My preferred route would be to take allipurinol for a while and get my numbers low enough, clear out some of the offending crystals and then re-think. I may only need 100mg per day to get low enough. Surely anything lower than where I am now would be better ? I feel 100mg may get me somewhere between 4.5 and 6.5 mg/dl, though time would tell. Looks good to me. Yet all the advice I see is 'This is a lifetime drug. Once you are on it, you're on it for life'. For me, its that finality which makes the decision so hard. Equally, I'm also prepared to admit, that if you've been on the drug for a while and are having no issues, you'd most likely just continue on with it.
Nokka , your situation is where a lot of Gouties find themselves at some time, I reckon.
Whether you take AP or not, you are in a marvellous position to chart your progress for us with your testing kit.
I can understand very well your approach- and you are obviously well up to appreciating our interest and providing the insight this can give.
This is not big pharma with Govt. on their shoulder, but in the old fashiioned way of self discovery.
Many modern drugs/ cures are based on trial and error many, many years ago -and were then followed up and owned by others.
My experience on 'lifetime' BP meds is that you can get off them if done with care, and aware of all the pitfalls, – including disinterest from professionals!
I don't see why this can't apply for some other meds (not all certainly).
I wonder if this attitude doesn't lend weight to the idea that losing interest in what you 'take in' tends to have unforseen side effects.
[Never mind what's on the label :)]
Good success with it- which ever way you take.
I think the important thing to remember is that its all about your numbers…NOT PAIN. If you have no symptoms but are running high 7's and 8's then there's still a potential problem.
‘This is a lifetime drug. Once you are on it, you’re on it for life’ is a generalization.
Like all generalizations, there are always exceptions (except this one of mine).
Allopurinol has one function – to lower uric acid to a safe level (below 6mg/dL). If something else happens that achieves this (e.g. withdrawal of one or more contributory factors), then allopurinol is no longer necessary. For most gout sufferers, nothing else can be done. For some others a change in diuretic usage, iron intake, weight etc can allow phasing out of allopurinol.
Statistically, the odds are against you. Medically, it absolutely depends on your circumstances and statistics are completely irrelevant.
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.
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 ?
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.
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….
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 myself
). 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.
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.
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 myself
). 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.
Personally, I prefer this coverage of the vegetables and gout research, but I'm biased
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 guess
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!
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. 😀
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.
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.
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