Never fully recovered from the first attack, it's been 3 months!

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I had my first possible gout attack in Aug. 2016, two weeks after an injury in the area. Ever since then, my left big toe was never how it used to be. The first attack wasn't too bad, I was prescribed with NSAIDs for 21 days, and it took about 14 days to stop the pain completely. My left big toe joint and the whole foot always looks darker then the other foot. 

In Oct, I went back to Taiwan and went to 3 RAs, did 2 blood tests and an X-ray. The UA of the first result was 5.4, and the 2nd was 4.9. X-ray shows that my big toe joint is a little bit calcified.

The first RA said because I'm not sore on the joint but ligament, it's not gout.

The second RA didn't think it was possible for me to have gout until he saw crystals in my joint. Although it was not much he said. This doc prescirbed me with colchicine, which didn't work AT ALL. 

I wasn't in pain when I went to him, but I was in constant pain after he drew the fluid from my joint. The area where the needle was injected has been red and sore when I press it.

The third RA is a prestigious specialist in gout, he had me do the 24hr urine test and blood test, which turned back to be 4.9.

He said that I might just have arthritis, instead of gout since my UA was low and gout wouldn't last for months. He prescribed me with a large amount of steroid and NSAIDs and said that I can take those when I'm in pain.

To date, the big toe looks slightly bigger than the other one, and I still pain on the side of my joint (where the needle went in) whenever I stand for too long or walk more than 2000+ steps. I haven't been able to bear weight on my left big toe joint.

I take 1 diclofenac twice a day whenever I started to feel pain and minor swollen toe.

I drink 2L+ of water everyday; I rarely eat seafood and no alcohol either (although eating seafood doesn't affect anything).

I'm really deperate at this point. No one can tell me for sure why I'm having such frequent pain in that area even though my UA has been normal. Is it because that the synovial fluid test did something to my toe permanently?

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22 Replies

  • Posted

    The fact of the pain at the site of where the fluid was aspirated - but I bet you'll never get a doctor to admit that. This risk could well be why in most cases this test is never done. I wouldn't be surprised if your toe recovered in time.

    As for your big toe hurting - my big right toe is slightly enlarged and slightly painful too - I have always assumed it was damage done by the gout. I do find though that if it acts up colchesine fixes it - you might try that?

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    • Posted

      Colchesine works well on me, which makes me think that in my case the toe issue is inflammation. In your case it may be damage done by the needle. I'm afraid I have no idea what might help that - except time, and perhaps either hot or cold water.

      Have any other contributors any ideas?

      One last thought - did you let the colchesine do its work - take a few tablets over a couple of days?

      Are you taking Allopurinol to stop the gout long term? If you aren't you should be NB if you are Chinese take only a 1/4 of a tab for the first 10 days to see you get no skin rash.

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    • Posted

      I took cochicine for more than 1 week and stopped because the last RA I saw told me to, since it wasn't doing anything anyway.

      Except for the doctor who drew the fluid, no one else prescribed me with anything but pain killers since my UA was 4.9, and the RAs didn't think I'd need it.

      I think you might be right -- it could be the needle that poked into my bone that causes periostitis or something sad

      I'll go to another internist in the US and ask about Allopurinol.

      Thank you so much for the input, rustygecko!

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    • Posted

      Good luck and good health. I bet you though it's one of these things that the body will slowly fix - probably damage to cartilage, which can take 6 months to heal.

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  • Posted

    My condition isn't the dissimilar to yours. Even when I haven't got an attack my foot is still painful. In my case an injury had given me artheritis, and as a result of the artheritis I have had gout attacks. It sounds like you may have a similar problem. I should also point out that whilst my UA level has been a little higher than average, it has never been particularly high. 

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  • Posted

    Had gout since 1995. Thoiught I'd sorthed it but had an attack in April 206 and I'm still in its throes. Tried cider with mother and celery; forget them, they don't wotk. Clchicin has some effect but 600 mgs daily of Allupurinol doesn't seem to do anythig either. A bit liek alcoholism, once you've gotr it, you've got i for life. Sorry everybody, but that's the truth. Live with it.

    David

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    • Posted

      What are your symptoms and what is your level of blood urate? Have you had your kidneys and liver checked? What is your body weight? Do you drink alcohol?

      It may be you are one of the 10% who over produces.

      I would say that your situation is not typical in that I know many people who are happily on 100 mg a day for decades without symptoms.

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    • Posted

      Funny how people pick on alcohol. The worst thing about the alcohol is the sugar content, and therefore fizzy drinks will create the same problems. I should also point out that animal protein is worse. Given the right drugs you should be able to live life pretty much to the full. My doctors don't even talk about diet any more

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    • Posted

      I agree 100% - it doesn't effect my life at all.

      Beer is a significant trigger of gout. You are correct about sugary drinks, but living outside of theUSA wedont imagine people sticking away litres of sugary pop each day.

      Worst of all is body weight.

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    • Posted

      I live in the UK. Yes beer can trigger gout, however cider and wine are not nearly as bad. The point is that it isn't the alcohol, it's the ingredients within it that can cause problems. There are many myths about gout, but the reility is that most people get it through genetics and bad luck. Diet is only an issue once you have it, and even then if you are taking the correct medication it shouldn't be an issue. 

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    • Posted

      I agree completely.

      In my opinion if you can handle Allopurinol (and most Caucasians can), just take it and get on with life. All these special diets of Eye of newt, and toe of frog, Wool of bat, and tongue of dog....I'll just take the Allopurinol.

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    • Posted

      We all know whatthe symptoms are rustygecko; excruciatingly painful feet. My weight is under 12 stone and I'm about 5'9" and shrinking. My last serum urate reading was 475. On 600 mgs allopurinol and taking colchicin as and when, but like everybody else limited ot three days treatment. seems to work. Since taking allopurinol I appear to be sensitive ot more foods than I wass before. Foods that never affected me, now do. Yes, I drink wine; about half a bottle a day. My betes noirs are strawbwerries; prawns; high bran cereals (they really kill me) oily fish; pulses; in fact anything healthy.Had my first attack in 1976 and my second in 1995. Since then it's an almost continual daily battle and the allopurinol ain't helping it seems. Good luck to those who have had success. As I said earlier, gout is like alcoholism; once you've got it; you've got it, and please don't take too much notice of the tripe pushed around on the internet. 

      David

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    • Posted

      Hi David

      Im sorry that you are suffering so much.

      I'm afraid that we don't all know what the symptoms are. While large toes are often involved, the symptoms of gout are varied.

      It is true that people who have high level of blood urate tend to be stuck with it for life. But the majority live with it with very little effect on their life.

      The cause of your problem is probably drinking half a bottle of wine a day. While you can get away with small irregular amounts of alcohol, research shows that any alcohol drunk in quantity induces gout - almost certainly because it is a diuretic.

      At 600mg of Allopurinol- if it's not working you are stil 50% below the maximum dose and Allopurinol can be used with increased success if used in combination with other urate lowering drugs.

      In your case however, with decades of uncontrolled gout, the problem will be complicated by the kidney no longer removing urate as it once did. Your foot pain is almost certainly gout induced damage to the joints. The reason for controlling gout is to avoid the result of long term gout induced joint damage.

      But to return to your main point - as I understand it - that gout is a life sentence and will inevitably deteriorate- this is not the case - most patients on Allopurinol have almost no problems with their gout.

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    • Posted

      Hello Rustgecko, Yes, I've also noticed tat I'm more sensitive to more foods since takibng Allupurinol for the last few months, but why? Is it the Allopurinol? Seven or eight years ago I decided ot drink a glas s of cloudy apple juice at breakfast/ Within three days  I was in agony. So, some weeks later, I repeated it with he same result. I've not drunk it since. Up to April this year I was telling evetybody I'd sorted gout and then I bought as punnet of strawberries, which i know causees gout with me. My wife can't eat many as they give her kidney pains, so I ate the by pickingthem fro the frit bowl over 2 or 3 days. Result; the statr of my current 7 month gout binge. But, we've got blueberrie; raspberries and blackberries in punnets in our fruit bowl which we graze on as we pass. Are they causing my sensitivity rather like the strwberries would? also I've started drinking cider vinegar with mother at eachmeal. The oyherr night whilst laying in bed with a lot pain my mind started considering hese items, and I thought to myself; am I mad or something that I've not connected these items to my increased sensitivity? I've curtailed my health regime. Watch this space.

      David

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    • Posted

      I have just realised the cause. It *is* the Allopurinol. I'm surprised your doctor didn't warn you.

      OK - being a long term suffer of high levels of blood urate, your body has squirrels away stores of urate crystals. They will be everywhere, your joints, tendons, organs: especially kidneys and heart. It is these long term stores which cause a constant inflammatory response - and lead to the early death of those that don't treat it.

      Allopurinol is reducing your levels of blood urate. These stores are then released into the blood (causing levels to rise again), and triggering gout. (NB gout impacts areas which get cold at night - keep your feet warm). These flushing out of the stores of urate crystals will take on average 6 - 36 months.

      You need to be taking drugs to calm the immune response. This might seem nasty - but it will eventually extend your life. It is the reason though that a very high % of people don't take the treatment - but you should have had this done years ago.

      You need to be drinking lots of water and very little alcohol.

      Do you take any other medication? Total no no s are aspirin and diuretics for high blood pressure.

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    • Posted

      Rustygecko, What you say makes sense and chimes with what I've heard over the years. I've never been offered allopurinol before although my brother used it and clearc his gout quite quickly, he was six younger+ than me and had his first attack at age 30; he died at 56 with heart failure through life style. Whilst never having been offered Allopurinol, I also never asked as I always had a thing about having to take regular medication; I'm one of those fortunates who, apart from gout is quite healthy, aged 76 and still runnning up stairs two at a time; albeit a bit slower than before. My current GP is a fellow sufferer, but a previous GP used ot frighten rhe life out of me with talk  of  not handling sugar well, which I don't use in anything, I've not a sweet tooth: we buy one packet of sugar per year and that to maske marmalade, and also my blood pressure, which is at present about 137/70. Because of past historical employment reasons, I do the shopping and cooking in our household and as our elder daughter says, "I'm convinced that we are what we eat"; nothing prepared or out of a packet. As to your question about medication, NO, I'm not taking any other medication, but your observations have been very helpful; thank you. It obviously makes sense.

      I'm feeling a lot more optimistic, as I can now understand the very intense bouts of pain that I get every night just recently at about 1.30 am and which ahve gone when i get up. Thank you

                                                             David

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    • Posted

      What you need David is also to look at the alternatives to colchesine- e.g. Indomethacin, but there's sure to be others. There's also an extra of pineapple that may help too - it's an anti inflammatory. Obviously something like ibufren and parecetomol not only kill pain but also reduce inflammation....and keep your feet warm! Don't have those toes poking out of the bed!

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    • Posted

      I already use Bromelain, an extract of pineapple stems, and it was the ibuprofens that I was eating like sweets as from April that caused my anaemia with a haemoglobin count of 1.29 and why I was refused at the blood donors in June. Then my GP put me on Indometacin which didn't increase my haemoglobin, and even with a stomach protector was not agreeing with me, even if it did ease the swelling and pain, so he told me to come off of those as it looked as though that along  with the Ibuprofens earlier had caused stomach bleeding . I'm due a blood test in a few weeks and then a visit to my GP to see if swearing off of the Ibuprofen and Indometacin has sorted my anaemia, and your comments aboutt he build up of urate crystals in my system over the years and the need for time to clear them out has made me more optimistic than I've felt for a long time. First things first and the anaemia is the most important. Thank you for your help and advice. I just hope that our conversations have assisted others in their thinking.

      David

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    • Posted

      Oh by the way rustygecko, I never leave my feet out of he bed at night in case the goosey gander gets them. Actually I have very warm feet: always have had. 

      Thank you,  David

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