I've had 'gout' for a year now - advice needed regarding medication
Posted , 7 users are following.
Quick bit of history...
One year ago I had a gout attack in my left ankle - came on in the middle of the night. Initially it was extremely painful (couldn't walk without crutches), but there was no redness or heat from the area so the doctor dismissed gout and sent me for an x-ray as they thought I'd broken it. X-ray came back clear and by this point my ankle was hot so they sent me for blood tests. Gout was confirmed by high levels of Uric acid.
I was given a dose of Naproxen, within a day or so it got better and I could walk again. I finished the dose which was perhaps 2 weeks and by this point there was just a bit of pain in my ankle when rotating it round but I could walk again. I lasted about a day or so without the tablets before it came back in the night, I got a repeat prescription quickly and took them the next day and it went pretty much straight away. I took the dose which again was 2 weeks and went back to the doctors. They prescribed me another dose but asked me to not take them until it started again. 1 year later I still have the unopened packet of Naproxen as it never came back again.
They have just sent me for blood tests again and have phoned to say that I still have high levels and they'd like to put me on Allopurinol to lower it - they want to start at 100mg and then increase it after a couple of weeks. They told me the limit for Uric acid was 360 and mine was 517.
I eat healthily and exercise regularly - I run at least 50 miles a month and do quite a few half marathons.
Since I had gout I only normally drink water - I drink over 2L of water every day. The only time I drink anything else is when out for a meal etc. I do drink alcohol but it is very infrequent, I might have 5 or 6 drinks perhaps 4 times a year - I don't drink at home (unless we have a party) (boring I know!) To make a good guess I reckon all but 1 day a month, all I drink is water. In the last few weeks I've been training hard for a run that is coming up so I have also been drinking protein recovery shakes which I have found have helped with recovery for my calf muscles. I have drunk one of these after a hard run (600ml) in addition to the at least 2L of water I drink every day.
I have declined the Allopurinol for now, partly due to the fact that I have this run coming up in a few weeks and don't want the risk of the tablets upsetting things. And partly as I wanted to research it more first.
The Doctor gave me the impression that given my diet and the fact that I drink plenty of water, that they don't think that I could lower my levels through a change of diet.
I also mentioned that during the past year I've had moments where if it was diet, then I would have thought I'd have triggered it (All inclusive holiday for a week - where I ate far too much and drank alcohol every day).
So they don't think it is diet related but said that it could push it over the edge. Before I had gout, I often didn't drink enough during the day at work and didn't go to the toilet at work. So that has been my biggest change since having the attack.
I'd more or less forgotten about it given that I've not even had a twinge since (the ankle continued to hurt when running for a couple of months but I put that down to damage the crystals had done) - but that has all gone now and I get no pain from it. I kind of hoped the blood test would say the levels were normal now and I could forget about it.
I don't really want to go on to the tablets and the doctors have given me the option to leave it for a year and see what happens over this year. I'm down for annual blood tests for life now. However I'm just concerned about whether or not the high uric acid levels will cause any long term damage?
If it helps I'm Male and 35. Otherwise fit and healthy.
Has anyone got any advice regarding the medication given that I have only had one attack? Most people seem to have had multiple attacks when I've read up about it.
0 likes, 36 replies
21Dewsbury matt16522
Posted
My consultant rheumatologist told me gout was only perhaps 20% lifestyle/diet related.
I suggest you wait for next attack and make a judgement then.
I've been on allopurinol for years... suits me... and I believe side effects are rare.
rustygecko 21Dewsbury
Posted
rustygecko matt16522
Posted
Your doctors are giving you the correct advice.
If you do not reduce your blood urate then you are looking at heart attack/kidney disease/stroke ten years down the line. Allopurinol has the added side effect of reducing cholesterol. Most people on allopurinol have no problems, but there is a period of adjustment for some people. Secondly, allopurinol (or any other urate-lowering therapy), has the effect of causing gout attacks as the stores of monosodium urate are flushed from the body. You can take colchicine as prophylaxis.
Good health.
matt16522
Posted
The doctors did say that cholesterol becomes a concern but they had tested that in my bloods and it was currently perfectly normal.
Part of my worry is that I've read a bit about protein being bad for gout, but I've been trying to consume more protein to aid my recovery with running.
I'm tempted to buy a uric acid portable tester, and start to take weekly readings - then alter things slightly to see if I can alter it (increase water intake, try lemon juice / cherry juice etc)
I do eat beef, chicken, pork etc. Our most common meat is chicken. I eat a little bit of things that can be triggers (tuna, brown bread etc.) I also do things that you would think would trigger it like having a night out (once in a blue moon) and having a good few drinks.
What do you think to the idea of the tester? It's a bit pricey at about £50 with 25 strips but if I'm only testing once a week then it is only £2 a week. Just thinking that way I can see if I can see patterns and see if I can get a gradual downward trend on the level over this next year.
I also don't fully understand the crystals, obviously when I was in excruciating pain, the crystals were in the joint and they were crippling me. My uric acid levels are relatively high at the moment at 517 - does that mean there are crystals somewhere in my body now? Or will there be a uric acid level where my body gets overwhelmed and then starts to create the crystals?
rustygecko matt16522
Posted
OK - high blood urate (hyperuricemia) is caused in most people by your kidney not getting rid of your uric acid (uric acid is formed by the break down of purines and purines come in DNA of everything - but most in meats fish etc). However.... catabolism (the break down of the dead/old/diseased tissues), is something like a couple of kilos a day of meat in a 80 kg man... now there is no way (I assume) that you are eating anything like that amount of meat in your diet. Your diet will not change your blood urate level, unless you are an alcoholic or doing something else very strange)...I have asked several leading experts on this - why do doctors give advice on diet? They replied that in the past it was believed that diet was a factor, but now, it is given out partly as tradition, but also because patients feel better if they believe that they have some control of their disease. Furthermore, there are some triggers in some patients (eg sardines is well known, and I think mushrooms might be too for some people)...
Are there store of monosodium urate in your blood? The answer is yes. When the urate crystalises the body attacks it - thinking its a virus (its the right size and shape) - it's this white cell attack that causes the pain and does damage throughout the body. To get rid of the crystals the body "buries" them under a layer of protein all over the body. When you take allopurinol of febuxostat the blood urate falls. The body "realises" low blood urate means that the crystals can be dug up and released into the body. When they are released there is a time before they dissolve (and kidney flushed), and during that time there is a chance of an attack. However, every day that goes past some of this stuff is being flushed out and quite quickly its gone (can take up to 60 months but the vast majority its - I forget - its something like 3-12 months for most of us).
**** The fact of having one attack is a reason for optimism *** some people never have another attack so, in that case, suck it and see - see if you are one of the lucky ones. However, the chances are against you - unless you had the attack through dehydration during an endurance run for example. High blood urate will cause damage - long term - over a decade or more - not a year.
I'm afraid fit and healthy is not a good sign. If you were horribly fat and an unhealthy alcoholic there is perhaps a chance that becoming fit and healthy might help - but you don't have that option.
Good health!
matt16522
Posted
I've been running since 2015, but did long bike rides for the 5 or so years before that. Rides of up to 100 miles. Before that I played basketball.
So I've been fit and healthy for the last 10 years, and wasn't really unhealthy before that. I was never overweight but didn't do a great deal other than walking between the ages of 20 and 25.
The only thing I can say that I was bad for was getting dehydrated. I've always sweated more than my friend when running out cycling but I'm normally quite good at rehydrating when exercising. However my one bad point was drinking at work. I changed jobs about 6 years ago and now have the kind of job where you are extremely busy. It is very easy to forget to ever have a drink or get chance to go to the toilet. I had the gout attack and that was the main thing I changed. I bought a half gallon water bottle so I could easily track how much I drank throughout the day and space it out evenly. Drinking more forced me to go to the toilet at work and got me into the habit.
I might be lucky and never have another attack again but even so if my uric acid levels remain high then I don't want to be causing other things to happen. So if that is the case even without any more gout attacks I still need to address the uric acid levels. If that can't realistically be done through diet then I don't see that I have much in the way of options other than the pills everyday for the rest of my life.
matt16522
Posted
I forgot to say I hadn't done an endurance run around the time of my last gout attack. I did a 5km run on the Thursday and the attack happened on the Monday. Annoyingly it was the Monday of a week off, so spoilt the holiday. It had been a regular weekend though so no specific trigger. Nothing out of the ordinary at that point, but the weeks before I probably had been continuously getting a bit dehydrated.
rustygecko matt16522
Posted
If I were you I think I’d drink loads of water and give it a go - see how it goes. Keep an eye on your blood urate every 6 months or so.
You might like to see if you have distance relatives with gout, if yes, bodes I’ll. No, more chance you’ll be ok.
Good luck.
jx41870 matt16522
Posted
If it did not start in the classic location, your big toe, then it is entirely possible it is not gout but "pseudo-gout" which is caused by calcium rather than uric acid. Even with high numbers. Pseudo-gout does not cause that "hot" feeling, it causes less swelling, and it attacks other joints. There are neither dietary guidelines nor effective medicines for it, other than NSAIDs and time, and maybe water. It is possible that the high urates make you more susceptible to the pseudo-variety but it will not respond directly to gout medicines. Short of biopsy I'm not sure there is any sure way of telling what you really have, but I believe the pseudo-gout is given short shrift by most doctors. Just thought I'd complicate your life a bit.
rustygecko jx41870
Posted
Gout doesn’t always start in the big toe (I think it’s 65% of cases do though).
matt16522
Posted
It started off without the heat but ended up with lots of heat and lots of swelling. I remember putting ice on, after fifteen minutes you'd take the ice off and it still felt hot.
No history of gout from any known relatives.
jx41870 matt16522
Posted
rustygecko jx41870
Posted
matt16522
Posted
I still eat food with high purines. I looked at the list a year ago and decided I didn't eat an excess of any of them so carried on just fixing the hydration issue as that was the only problem I could see. As I had no further attacks I presumed I had fixed the issue. It was only this blood test that led me to realise that the underlying issue is still there. I guess I don't really know but my uric acid levels may have been high like this for my whole life and if I hadn't had that one attack I would be completely unaware that the levels were high now.
rustygecko matt16522
Posted
Purine consumption has little to do with your blood urate- vegetarians get hyperuricemia the same as the rest of us! It’s to do with your genes and age. Corporal abuse helps - but if it’s in your genes - you’ve got it coming. I bet if you contacted your 3rd or 4th cousins you’d find it. Also if you have a family with lots of women you’ll see gout less, or if you have a family that dies age 48 of heart attacks you may not see the gout... or in your case, age 33.
I’ve done the experiment on myself: do the blood test - perfect result - then drop the allopurinol, wait a week and do it again - back up too high - take the allopurinol a week and repeat - back to normal.
I’ve also brought my BMI down to 24 (it’s normally 26 nowadays)... again no change.
Before I did these experiments I wrote to a couple of the expert academics on gout - they told me it wouldn’t work “but I’d be interested in the result anyway.” It doesn’t work.
The problem is in the kidney. The kidney removes the urate, and then sucks some of it back in (god only knows why such a silly system evolved). For some reason either we don’t take enough out, or we bring too much back (probably the former). This is why being hydrated is important - it means the kidneys are working more constantly and on less “toxic” blood.
One almost final thing - when I was diagnosed the first thing they did was send me to see a cardiologist to have a full check out - the reason is gout / hyperuricemia damages the heart. This seems to be a sensible precaution but is rarely done (due to cost), in western healthcare systems.
But, look, this stuff is very worrying at first, but gout is actually good. Why - because you’ve been given the first tap on your shoulder about your mortality - you will have to look after yourself a bit better. You are aware of your high blood urate - most people find out through a heart attack aged 55, not a blood test aged 35. You should certainly keep an eye on your heart long term. The downside? Maybe you’ll have to take allopurinol every day? But so what? It has no side effects for most of us and *if you keep it under control*, high urate won’t kill you.
jx41870 matt16522
Posted
Matt, I've had four or five attacks of gout over the last twenty years, and in every case I've been able to link it to high purine foods I had recently eaten. I know all the arguments, but this is the case.
?And when I've had an "attack" that I could *not* link to diet, I now realize what I had was pseudo-gout. Let's see, maybe the first of those was after age 50, but with the small attention it gets from the medical community I'm not going to say it doesn't happen to younger people roughly as often as real gout.
?Can you take your drugs and keep eating everything? I don't know. I would not think it advisable. Can you avoid all gout attacks with a clean diet? Also don't know that. In my case, my body seems juust able to handle some high urate readings, until and unless I push it over with diet. That's just me. And Rusty will tell you the high numbers are still damaging, even if you have no gout attacks.
So, judge for yourself and choose your path forward.
rustygecko jx41870
Posted
What drugs do you take to reduce uric acid?
What is your level of blood urate when you are tested?
How often are you tested?