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  • #2730
    ggrrigson
    Participant

    Hi guys,

    I  am new here, not very happy, but (as the admin said), it is more likely to find good advice among the sufferers than from doctors who just read a few things about gout 10 years ago, when they were studying at the university.

    I am quite curious about one thing: what sort of values did you get when testing for UA blood level? Some of you mentioned a few results, but I would propose you to do this in a more organized way and eventually to make statistics ( I can happily do this if you contribute the raw data). Just let me know 1. the “normal” level in the absence of any treatment 2. the max. level recorded, whenever it happened 3. the minimum level. 4. the “normal” level under treatment. I don't know if and how it will help us, but it may.

    I personally remember testing the UA first when I was approx. 25 years old. At the time I was totally asimptomatic with no idea about what gout was – it was just part of a routine examination. I also remember that the value was 8 and the doctor asked me if I was eating a lot of meat. I said no and she moved forward – if she had told me about the risks, I might have never needed to know about gout-pal! Anyway – time passed quickly, I developed a taste for red meat and red wine and at the age of 34 I found my right big toe swollen. Bad luck followed me as I didn't know what it was, I remember taking low dose aspirin, drinking beer and eating various pro-gout food. This made it last for approx 1 month until a doctor finally tested my UA level. It was 7.9 and two weeks later I finally ended up with a dexamethazone injection right in the joint, which terminated that flare in less than half a day. Before the steroid injection, I tried many NSAID but they didn't work at all. Aftwerards I tried taking allopurinol but I remember developing a form of constant and annoying pain in most of the joints so I stopped it. Did any of you experience similar symptoms?

    I changed a little bit my habbits and things have been quiet for 2 years without any medication. During these 2 years I checked the UA level from time to time and it was close to 7 most of the times. One time the test results showed the value of 12, I was very worried but from the next time I got back to 7 which made me question if that result was accurate or just a lab error. Did any of you get such a high value? I can only hope it was wrong.

    I was very unhappy yesterday night when I felt again the easy recognizable pain. It was also in the right big toe, but this time on the interior side. It is not very severe, but what worries me is that I really didn't eat anything known as a trigger. The only thing which was not part of my usual diet was a type of home made brown bread. Does anyone know of brown bread triggering a gout flare? I am now taking baking soda which seems to work fine, most likely tomorrow it will be just a memory. But the big question remains: what about the future? I am 36 now, slightly overweight, quite healthy in general and willing to do a lot more in this life.

    I look forward for your answers

    Many thanks

    Dragos

    #5937
    trev
    Participant

    An interesting first post Dragos.

    Analysis of data is a good idea but for something as complicated as gout you would have to have a very big range of questions and along time period doing it too.

    I've never taken AlloP, but you're not alone in getting side effects. Advice will issue forth 'ere long!

    One thing always advised- is no Stop/Start with it though- so that may be a factor in your timings.

    Onm the trigger point- I think it takes a fair while to get the habits of this disease so it's not usually possible to nail a culprit with certitude.

    However, Yeasts in Beer, MSG, Extracts etc. have been implicated often enough for gout- so bread may be a problem for you.  It's normally kiilled by the baking, though the remnants would still be there. You can still smell and taste the yeast, after all. Most people like it for that reason.

    Get the recipe if you can.

    You're definitely more aware than many your age about Gout BTW, so with your approach and help here + more knowledge being gained nowadays you will have a good chance of managing /treating any further attacks you may be worried about.

    Whether lifestyle or age is the bigger factor for gout, getting older seems to bring it on more.         [ BP, Weight gain, Stress,Kidney function]

    Coupled to the genetics factor- this makes it always a personalised disease and maybe why medics find it hard to get a handle on many cases – and just follow the average numbers game , which we know on here, doesn't fit very often.

    #5945
    zip2play
    Participant

    Hi Dragos,

    Yes, large rafts of UA data would be helpful to assess the values of food (or lack thereif) and I am an information junkie but what holds me back is the close to $1000 U.S./year to generate just 2 data points a day (machine, strips, lancets,shipping, etc.) This is far too pricey a game for me.  This compares with my cost for allopurinol of $40/year.

    You are where many of us found ourselves. You got a few readings of hyperuricemia and thought nothing about it, then had some foot pain and didn't connect it with gout, but then you got THE TOE and the correct diagnosis and hoped good living and NSAIDS would be enough for control (actually the usual first response is to do nothing and see the bad attack as a quirk that will not happen again.) You found the right answer early and tried allopurinol but wanted off it fast so you found a reason to abandon it (some joint pain after starting is quite common.)

    You are now looking for alternate means to control your uric acid. You have made the leap of faith that you COULD contro it by watching what you eat and measuring to see the response of your foods. Some few people can go this route but most cannot succeed without drugs.

    You have proven uric acid deposits, your first attack guarantees this. You get consistent UA numbers around 7.0 with the occasional 8 and 12. Flukes or not, ALL these readings indicate a uric acid too high to remain in solution in the presence of any urate crystals in the body. Unless you can get STEADY readings below 6.0 without drugs, you will have more gout atttacks.

    Once you have your first gout attack, you have gout…once you lay down your first crystal, you have gout… and once your immune system first attacks these crystals, you have gout. And if the immune system behaves the way it USUALLY does, every time it attacks what it considers an antigen it gets better and better at fighting the same antigen faster and harder. That's why attacks get worse and more frequent as the immune system gets “trained.” You must intervene at some point to decide when enough is ENOUGH!

    So your options aren't many: try all the folk remedies, they will work or not, most likely not. Get a tester and see if you can find triggers to avoid.  Decide on how many attacks are ENOUGH and when you reach that number, get on a drug. If I were just starting with this illness, I would have the 24 hour urine test to see if probenecid was a viable option, but allopurinol agrees with me and 300 mg./day allows me to eat and drink anything I wish and I haven't had a real attack in more than a decade. During a 2 year trial at 200 mg. I was getting occasional twinges (and my blood test confirmed I was running UA's in the upper 6's.)

    So good luck on your journey and we are here to help.

    #5980

    Hi Dragos,

    I concur with everything zip2play has said.

    The allopurinol experience was almost certainly a sign that your joints were getting better as old crystal deposits dissolved. This happens, but soon gets less. It is far better than waiting for the urate deposits to damage your joints.

    The time is definitely right for you to get your uric acid levels under control ( and that means under 6). Then you can enjoy your 40s and beyond without having to worry.

    #6014
    ggrrigson
    Participant

    Hi guys,

    I am impressed by your “team spirit” if I may call it so! There may be a more appropriate English expression but I am not a native speaker.

    Fresh news, this time I got rid of my mild attack by just taking baking soda. As you said, now I have begun to understand that the situation cannot really be controlled with a diet. In fact, I got quite controversial results in the last two years. I remember many great dinners with a lot of spicy sausages made of mutton (my favorites) + a generous quantity of wine, without any issue. Next day I went to the lab and the UA test result was very encouraging: 7. Then, in the middle of a “healthy food” period I got 12! It is really hard to understand and to draw correct conclusions when the test results are so paradoxical.

    Anyway, it was important for me to understand that some of you take allopurinol and get the expected benefits. I don't know why, but based on my previous readings I have got the impression that it rarely works. Thanks God that's not true. I will consider resuming the treatment, but very honestly the first side effects were discouraging: almost all joints hurt, it was painful to sit, to wash dishes and even to keep the fork in hand. I had got a form of unpleasant reaction every time a joint was touched: for instance when the knees got in contact when I was trying to sleep. These symptoms went away a few weeks after I stopped allopurinol. I wonder if these symptoms had been caused by the already existing crystals in the joints which had begun to dissolve due to the lowered level of UA. This should mean that if I had continued, all the pain should have gone after a while, right? Unfortunately I didn't test my UA level at all during the treatment with allopurinol, so I can't say if it was so.

    Let me ask something: the theory says there are two main categories of sufferers: the overproducers and the underexcretors. Assuming I am an underexcretor, why should I choose probenecid instead of allopurinol? Any marked differences in results? This is something I couldn't understand from the internet articles. And another question: could losing weight be enough to lower the UA to an acceptable level?

    Many thanks

    Dragos

    #6023
    zip2play
    Participant

    Dragos,

    If you are an underexcretor, probenecid will increase your excretion markedly. But allopurinol makies less uric acid so then your underexcretion will do the job. Reading between the millions of lines on the subject leaves me to believe that probenecid has more side effects than allopurinol, especially the increased likelihood of stone formation. But people are different and there's nothing writ in stone that says if allopurinol hasn't done the job in a year then probenecid might be a good choice. Some people with masses of tophi take BOTH drugs to get levels of UA in the 3's.

    I THINK (but don't quote me) that there is serious cross allergy between probenecid and sulpha drugs.

    If allopurinol gave you a lot of trouble with joint pain probably from migrtating UA, try taking it with daily colchicine, perhaps 2 a day for a month or two.

    I feel bad for people who have to suffer the pains to get the cure because I was so very lucky…no acute attacks since my very first dose of allopurinol (400 mg) all those years ago.

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