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  • in reply to: How often should I have blood test ? #18306
    nokka
    Participant

    Thanks for your input, Keith. I reckon most people who have gout are under-excreters. Also most people start to get gouty symptoms in middle age, which rather suggests our ability to excrete decreases with age. Whether that continues to decrease the older we get is open to debate. Perhaps when we get much older our bodies slow down and therefore we produce less urate for that reason. I guess we have to continue to monitor and be aware of what our urate levels are.

    I have decided after consideration to move to 300mg per day. That seems to be the standard amount anyway and I feel 380mmol as a blood reading was just too high. I have over recent times been more tingly also, so I think it would be silly to ignore the signs.

    I’ll let you know if and when things change. Keep up the good work, Keith. This site has been an enormous help to me and, without doubt, many others.

    in reply to: How often should I have blood test ? #18290
    nokka
    Participant

    I had my latest blood test. I expected the usual result, which has always been somewhere between 320 and 330 mmol. However, the GP rang me a few days after the test to say the test has shown 380mmol. He asked if I wished to increase by dose to 300mg of allopurinol as current policy was to get below 300mmol. Or whether, as I haven’t had a flare in 5 years since starting meds, I wished to stay as I am on 200mg. I said I’d think about it.

    Any views on this ? Could this have been a rogue test result which quickly settles to my normal range ? Do you think it is likely that our levels of urate increase as we get older ? (I’m 55 now – first attack at 40, started meds at age 50). I don’t think I have dramatically changed diet in the last year since my last test, so a little confused by the increase. I am aware though that I am getting more tingling sensations recently, which was a big feature after my last full blown attack 5 years ago. Any thoughts gratefully received.

    in reply to: How often should I have blood test ? #17851
    nokka
    Participant

    Very quick U turn by the doctor who rang me. On explaining that I consider having an annual blood test for a long term medicine a good idea – he quickly agreed. I asked why the test had been questioned in the first place and he spluttered something about last year’s result being OK so should remain OK. My view this is more to do with a much larger Practice taking over my smaller GP Practice and trying to make cuts.

    Anyway all OK. Thank you, Keith for your helpful advice as always.

    in reply to: How often should I have blood test ? #17768
    nokka
    Participant

    Yes, that was my thought too. I’ll see what he has to say when he rings me on monday and update then.

    in reply to: UA Level 7.1 : Time for Allopurinol. #11808
    nokka
    Participant

    I had a really bad attack of gout attack in summer 2009. I tried all the natural ways of beating it, but the pain lingered on and on. In the end I started Allopurinol and haven't looked back since. I actually had a pretty good diet before the attack, but that final attack made me think even more about what I ate and how much alcohol I drank. Even once the allopurinol had done its magic I still continued with the better diet and lower alcohol. Things changed.

    ?

    My brother in law also had an attack of gout around about the same time as I was in great pain. His attack lasted a day or so and then went away. He shrugged it off and continued on with his previous lifestyle. He is overweight, drank too much, smoked too much, did no exercise. To be honest, I rather hoped that he (and others like him) would have a gout attack from hell – that would give him the wake up call he needed. The gout hasn't happened again – instead a couple of weeks ago he had a massive heart attack. He almost died, but as he lives close to his local hospital, was saved. A few days later he had a minor (hopefully) stroke. He is back home now. He is still in danger, but will hopefully pull though. He has a stack of pills he needs to take now for the rest of his life. He has smoked his last cigarette and has already lost 10 lbs in 2 weeks.

    ?

    Gout is painful and can cause us distress, it is true. However, if it gives you a wake up call and allows us to change our lifestyles without needing a spell in A & E (or ER, depending where you're from) it could also, in some weird way, save our lives.

    in reply to: Blood test – what to test for ? #11613
    nokka
    Participant

    Well I'm pleased to hear your problems haven't affected your sense of humour. I hope your knee improves. Tricky things knees. Apparently the best place in the world for having a knee operation, or replacement, is Northern Ireland. They have tons of experience due to all the kneecappings during the Troubles. Its a strange old world.

    ?

    I am due my blood test in the next few weeks. I have the form and just need to drop in at my local Asda where they have a little blood testing clinic. Very efficient they are too, plus you can pick up your beer, sardines, offal etc on the way out. I'd be interested to hear how you get on with what tests to get before I go – then I can doctor my form further.

    in reply to: Blood test – what to test for ? #11603
    nokka
    Participant

    LFT is Liver Function Test, Hans. Looking at the list of boxes I could tick, do you reckon U&E is the one for kidneys ? It stands for Urate & Electrolytes apparently and tests the kidney in some way. I think in the past I was tested for inflammation also, but that seems a bit pointless currently.

    ?

    Hi, Keith – hope you are well. I was in Idle a few days ago & thought of you. How is your recovery going ?

    ?

    For those who don't know, Idle is a suburb of Bradford in the UK. Its local Working Mens Club is known as The Idle Working Mens Club and has the highest membership in the world. Or so I was told once.

    ?

    I've been very happy with allopurinol and currently can't see me coming off it, to be honest. I pondered for a long time before taking the plunge with the drug. I'm glad I did – I've had no allopurinol side effects at all really. Unless something changes, my GP doesn't want to see me either – just keep having the bloods done and check all OK. I rarely do home testing now, but when I do the score is somewhere between 4.6 and 6. While symptoms are at bay, that'll do.

    in reply to: Infections and rashes #11139
    nokka
    Participant

    Thanks for the input, Zip. Rashes are common, of course, and diagnosing one is difficult. I usually let these type of things sort themselves out, which they usually do on their own. As I've had these ones about 6 weeks now decided to give them a helping hand. Bought some Hydrocortisoid cream from the pharmacy yesterday, plus some emollient cream to stop the skin drying out too much. Hopefully that'll do the trick.

    ?

    Having the rash just made me think about just what a allopurinol induced allergic rash looked like. From what you say, sounds like you'd know something was seriously wrong.

    in reply to: Tofu, Eggplant, and Gout #10609
    nokka
    Participant

    Chilli is bad for gout ? From all I've read all veg is OK. I eat loads of chilli – plus I like to eat it to properly spice food up. I love Thai food and the like and generally find it to be far far healthier than the average western diet.

    in reply to: Three month attack-free period has come to an end #10473
    nokka
    Participant

    We've seen quite a few people saying that heavier exercise has caused them an attack of gout over recent times. I think my own last attack had much to do with pushing myself pretty hard.

    My understanding is that the vast majority of uric acid is caused by the natural breakdown of the body. 80% or something. If we exercise hard I suppose we cause the body to break down even faster, perhaps much faster, which must cause a spike in uric acid. As we know with calorie burning, this can go on for some time after exercise has stopped.

    This hasn't stopped me from exercising, I still go to the gym regularly and still push quite hard, so far with no repeat. But I've been on allop for a year now and those tingly sensations get less and less and less. Maybe I've got rid of a good percentage of crystals. Keep going, Nate, you will surely get there.

    in reply to: “wet” “Tingling” “Burning” feeling?? #9929
    nokka
    Participant

    After my last gout attack I had a lot of tingling in various joints around the body – toes, knees, elbows, wrist all over. I started allopurinol in November last year and they continued for some time after, although they'd come & go. I definitely had that feeling of a pin being stuck in me, Art – that's not a nice feeling. It's not just the pain of it, but the constant reminder that you have gout. Plus, at those times I sometimes felt generally a little unwell. On the bright side, I didn't have another attack once starting allopurinol.

    Things are much better now. I still get the odd twinge, but nothing too bad. I eat and drink pretty much anything I want now, though some changes made have lasted. eg I eat more vegetarian food now, plus drink less overall. I also exercise quite hard with no adverse effects. 

    Looking back, it seems to me that those early days on allopurinol can start to shuffle stuff around and cause these reactions. It takes a time to settle, but once it does we start to improve.

    in reply to: New to Gout but low UA Levels Mystery? #9253
    nokka
    Participant

    2.4 to 4.4 is normal ? Which scale are you being measured on ? Most people on here are from the States and are generally measured in mg/dl. I am in the UK and was measured in mmol. I wonder whether, actually, your measurement was 450 and then 460 mmol, which I think corresponds to about 7.6 mg/dl. That would make more sense as your symptoms sound like gout to me.

    I had lots of tingling in many joints after my last attack. I have been on allopurinol now for about 8 months; no attacks, though lots of soreness, tingling and stabbing pains in various joints which I hope is old crystals dissolving. In the last couple of weeks, though, even that has receded a little, though sometimes it goes away only to reappear a few days later.

    If this is your first attack, it is unlikely your GP will put you straight on allop. It could be a while before your next attack – for me 5 years between attack 1 and 2, and another 5 between attack 2 and 3. However, there is an extremely strong likelihood that you WILL have another attack in the future, most unfortuantely do. Afraid to say, much as I'm sure you don't want to hear it, but drinking a lot of beer will probably bring attack number 2 forward.

    Don't despair; remember you have allopurinol waiting for you when you're ready to start. It is usually very well tolerated and does the job nicely.

    In the meantime, I would question the basis of those stats, if I were you.

    in reply to: reducing UA (newbie gouty) #9137
    nokka
    Participant

    I've wondered about that exact point you make, Odo. That is, are we better having our blood tests showing in the 5s or lower than that. I take 200 mg allop a day and, touch wood, have had no flares since starting the drug. I get plenty of minor sensations, some worse than others which I assume is urate dissolving, but no actual flares. My home tester shows SUA of between 5 and 5.5 mg/dl.

    Obviously if I move to 300mg allop per day I will get a lower blood score. Which will, one assumes, dissolve urate faster. That may be a good thing, I'm not sure; but I remain cautious. I've had no flares, why risk it ? What we cannot know for sure is whether we ever go above that 6.8mg figure…and, if we do, whether it causes us any damage if we are only above that figure for a relatively short time.

    I have my first official blood test soon since starting 200mg. Will be interesting to see what that shows, though I confess I still debate whether to increase the dose if it shows, say, 5.5mg/dl. Confused I appreciate zip is a huge fan of 300mg, and I respect his views and understand completely his argument. However, I am still to see a proper study confirming that view. I'm sure that most of us would prefer not to have to take medication at all to control gout; but, in my simplistic way, I kind of feel 200mg isn't quite so bad as 300mg. Smile

    in reply to: Attacks on Allopurinol #9047
    nokka
    Participant

    I have been on allopurinol since November 2009. My dose has slowly increased over that time, partly as I was overseas and therefore away from my GP for 4 months. I started on 100mg; after a month went up to 150mg and on return home went up to 200mg. My next official blood test is next month and its possible I go up again to 300mg then.

    I have had no attack as such during that time, but have had lots of micro attacks. How does this feel ? Well, like there's some tiny little guy following me around with some pins. He sticks me with an assortment of his pins, some of them are only little so not too bad, some of them are much bigger and he jabs me with them. Its a sharp sensation, which lasts only a few moments, but they can be quite frequent at times. I assume they are caused by crystals dissolving and the urate moving around, but its difficult to know for sure. Other times I feel sore in various joints, elbows, knees, feet. Sometimes when these sensations are at their worst, I can feel a bit groggy. Other times I feel perfectly normal.

    I have a home tester, which has been showing usually low to mid 5s. I had some problems with the tester when overseas when it gave erratic results, so not too sure whether they are correct. I'll see at my next blood test. Its so difficult to know what to do for the best. I have had not proper attacks sine being on allopurinol, so don't wish to do something which upsets that; while at the same time it would be nice to be rid of the little guy with his armoury of pins.

    in reply to: Water intake, audio BBC-Topic Closure #8840
    nokka
    Participant

    This reminds me of some high profile cases a few years ago of young people dying after taking ecstacy. They had been told that if they must take the drug, then they should drink a lot of water. In some cases they drank so much (especially after sweating while dancing) that they literally overdosed on water and died. Ironically, it wasn't the ecstacy that did the damage, but water.

    I guess you need to drink a huge amount before that becomes a problem for most though. I like to go to the gym and can sweat like a horse whilst there. After, I always need to drink pints of water to rehydrate – never been a problem for me. In fact, it seems to me that your body gets used to having good levels of water put into it. If I don't drink water I get thirsty quite quickly. Always amazes me how little some people seem to drink; in my view most people should drink more. (Water that is, perhaps not beer Frown

    in reply to: Newly diagnosed #8578
    nokka
    Participant

    When it comes to gout, K, very little makes sense. The diet issue is possibly the most confusing of all. Like me, you appear to eat healthily and then suddenly – bam – you have gout. Where did that come from ? When reading through what you can and can't eat all your favourites appear in the 'Can't' camp.

    In reality, everyone seems to react differently to different foods. Some seem to have a reaction straight after eating only a small amount of a foodstuff, others have little or no reaction to it. For most, it tends to be trial and error. My own view after having my third and worst attack was to take things easy for a time while I got better, then reintroduce foods and drinks into my diet and see how it went. The worst culprits do seem to be seafood, meat and beer. Though some vegetables and lentils and so on often appear in the risky category, most research suggest they are safe. But try things out and see if you have a reaction, though be careful as its possible you may blame the wrong thing.

    By the way, do you know what your uric acid level is yet ? Just how high is it ?

    I debated whether to start allopurinol for several months before starting. Usually, the advice after only one attack is to wait and see how it goes. It could be years before you have another. A period of 10 years went by with only 3 attacks for me  – in the end I started allopurinol as symptoms went on and on after that 3rd attack. I'm still finding the correct dose for me on the drug, but I've had no issues at all with it – its usually a very well tolerated drug. My view is you should remain open minded; hopefully your pain will soon subside. Have a blood test to see what your uric acid levels are, make some changes to your diet by all means, and who knows – that may be enough for you.

    in reply to: was it the crab or orange roughy that did me in? #8446
    nokka
    Participant

    It seemed when I first read through the list of foods to avoid that all my favourites were there. I love game, seafood, sardines, anchovies; though wasn't eating them on a daily basis.

    At first I cut all that stuff out. I just didn't think it was worth the risk. Indeed I cut out pretty much all meat, chicken etc. while things got a bit more stable and I didn't feel quite the need to worry every time I ate anything. For about 3 months I was almost a complete vegetarian. I then started medication.

    I currently take 200mg of allopurinol and things are OKish. As time has passed I have tried some of those forbidden foods – wonderful prawns in South East Asia and other things too. I've not had an issue with them at all. Now, clearly, we have to be careful, to take things a step at a time. I still wouldn't want to have a full meal of, say, sardines to start, followed by liver. But I think once things stabilise it MAY be possible to have some of those foods we love. Just don't go overboard on them; and don't have them every day. Take it slow and see how you feel afterwards.

    in reply to: Time to start allipurinol ? #8290
    nokka
    Participant

    Thanks for the replies, guys.

    Veg Guy, you may be right – I may yet end up on 300mg. I prefer to take things steady though. I haven't had a flare since starting on Allop and note from the forum that sometimes those who increase dosage quickly do. I certainly didn't want to do that while overseas; now I'm home I'm happy to increase, though realise geetting to the correct dosage may take a little time.

    Utubelite, thanks for posting your figures. They would suggest that the increased dosage should get me regularly under 6mg/dl. Whether it is sufficient to get low enough we'll have to wait and see. If not, I'll increase again.

    Will keep you posted.

    in reply to: Time to start allipurinol ? #8267
    nokka
    Participant

    Got my blood test result yesterday and it was 6.3mg/dl. This was not a lot more than the results I was getting in Thailand, but I was disappointed nevertheless. After discussion with my GP we chose to put the dose of allop to 200mg per day (from 150) and see how that affects things. Since returning home I have had more soreness in the joints and more tingling generally.

    I feel a bit frustrated. First blood test back In Sept shortly after gout attack was 7.8mg/dl. After hard diet work got this down to 5.7 a few weeks later. This was before I started allop. Now, despite taking allop for about 5 months I get a result of 6.3 mg/dl. Grrrrr.

    Of course, it may be due to a sudden spike from old crystals dissolving. Who knows. I guess I'll have to wait and see how I feel now I'm on 200mg and also what my next blood test in June shows. I'm feeling my way slowly with increasing dosage on purpose. I haven't had a flare since all this started, so I suppose that that is encouraging. I just want to be on the right dosage and stop the soreness/tingling.

    Does anyone know, as a rule of thumb, how much we can expect our uric acid levels to fall for every, say, 100mg of allop we take ? Or are we all different and a small dose for one may reduce levels significantly, but change another hardly at all ?

    in reply to: Time to start allipurinol ? #8141
    nokka
    Participant

    I actually gave up with the tester after it gave me a conflicting result to an official test. In the end I sent it home with a bunch of other stuff from Vietnam. They said it would take 3 months surface mail and so far it hasn't arrived. Its about 3 months since I sent so maybe it will come soon. However, I don't have a great deal of faith in it anymore, unfortunately, so not sure if i'll use in the future anyway.

    I love the food in south east Asia, though was never really sure whether it was gout friendly or not. Much of the food derives from Chinese cooking and those guys eat anything, as you know. Vegetarianism is not something South East Asians understand. Plus they cook everything in concentrated fish sauce or shrimp sauce. In the end I pretty much ate what I wanted, though would often have just stir fried veg with noodles or rice for lunch. (Delicious anyway). The diet is undoubtedly healthy, though sadly some are starting to get a taste for our western foods.

    My aim now is to eat a balanced and healthy diet, but hopefully without too many restrictions. I seem to tolerate Allopurinol OK so don't really have an issue with it. I just want to make sure I'm on the right dose presently.

    in reply to: Time to start allipurinol ? #8124
    nokka
    Participant

    Hi, guys. Thought I'd post an update as (unfortunately) I am now home from my travels.

    Straight after my last post I put up my dose to 150mg. Hey presto, within 24 hours all tingling disappeared and I felt good. Although I remained generally well-behaved, inevitably with no tingling or gout reminders I loosened my diet a bit. Drank a bit more beer, started to eat some seafood (those prawns in Asia are too tempting to avoid). After about 4 weeks the tingling started to come again.

    Late January I was back in Bangkok, so hightailed it for another blood test. Showed 6.2mg/dl. The blood test was at a hospital in Bangkok called Bumrungrad; generally regarded as one of the best hospitals in Thailand. It was a lovely place, more like a 5 star hotel than a hospital. My consultaion this time cost 1000 baht, or about £20, though for this I got a mini health check and a consultation with a doctor. The doctor said my figures were fine (I would have preferred them a bit lower). I asked whether I should change my dose (thinking maybe I should go to 200mg.) She said that I could safely reduce to 100mg. Hmmm..decided to ignore that advice.

    Stayed on 150mg and that's where I am now. I would accasionally get a bit of tingling as time went by, but no gout flare, so was generally happy. I managed to drink some alcohol most evenings, though never much – and though in the heat I would have preferred to stick to beer, I would more often have a glass of white wine, or a gin and tonic. Diet stayed good and I lost about 10lbs while away – I am now moving towards being skinny. Whenever I got the tingling I would wonder whether it was an old crystal dissolving, or a new one forming. Its so difficult to know.

    Returned a couple of weeks ago; almost immediately tingling started up again. This may be due to the cold weather, or due to other changes – who knows. Had a blood test last week and will get the results in another weeks time.  I'll post the result when I get it. Now I'm home and nearer my GP I want to move to the next stage. I feel I may need to increase the dose a bit more yet to get to about 5, though will wait to see what my score is now before deciding.

    in reply to: Time to start allipurinol ? #6815
    nokka
    Participant

    Hi, guys. I'm in Northern Thailand at the moment. I've been on allop for 4 weeks now; been here in Thailand for 2 weeks. I decided to stick with 100mg and see how it went. My last 2 home tests before leaving were 5.2 and 4.7 mg/dl, so all seemed well.

    I brought the testing kit with me, to keep an eye on things.  Tingling and general soreness continues. I've been eating mainly Thai food, probably a bit more fish & chicken than I was eating at home. Also, been having some alcohol most nights, though generally no more than 2 drinks – either wine or gin and tonics. I've had a couple of  beers, but very few. Anyway, I've only tested a few times, first one 5.6 was OK. Then a few days later jumped to 8.0, then 8.3 and today 7.6. Seemed odd to me and had planned to get a proper blood test done while here in Chiang Mai. Went down to the hospital and for 100 Baht (£2) got a very quick uric acid test done. Result 6.0 mg/dl. Back to my room to see what the home tester said again – 7.3mg/dl.

    Not sure now whether the tester doesn't like travelling, or whether its always been giving me incorrect scores. Either way I no longer trust it. I move on to Laos in a couple of days, where I'm sure the health service isn't as efficient as Thailand's, but think I'll stick with official blood tests from here on in.

    I'm stil umming and ahhing about increasing dose and may go to 150mg. I've avoide d seafood so far (though would love to try some) and a worry free beer sounds good. At the same time, no flare as such, toe seems good – just thisl soreness and tingling, I don't wish to rock the boat – I really don't want a full blown attack while here.

    Your thoughts, as always, are most welcome.

    in reply to: Time to start allipurinol ? #6635
    nokka
    Participant

    Yes, I see your point and will think further on that. Fantastic explanations, guys.

    Couple of extra thoughts. Each time we increase dose, don't we also increase the chance of having an attack ? There seems a lot of anecdotal evidence of this, no ? Also, in a few days I will be in tropical temperatures. As clearly my body will be significantly warmer than where I am now Cool, will that help me avoid those floating urates resettling somewhere cold ?

    in reply to: Time to start allipurinol ? #6616
    nokka
    Participant

    I see. I think Embarassed

    Makes you wonder all this. If you're a bit high and your crystals don't get disturbed too often, well maybe you'll not have an attack for some time. If you get your figures down to 6 – 6.5 you have a bigger chance. Food for thought !

    Clearly below 6 at all times is the place to be. I'm averaging 6.0 at present and have only been on the drug for a week and a bit. It may be sensible to move to 200mg per day, though would like to see where I stabilise with the 100mg first. I've read it can take a couple of weeks before the drug takes full effect.

    I'm not particularly averse to moving to a higher dose; if that's what's needed, that's what's needed. But I am mindful of increasing dose when overseas and I especially do not want to cause a major flare while away.

    Thanks again for all your inputs.

    in reply to: Time to start allipurinol ? #6608
    nokka
    Participant

    Thanks, guys.

    I see your point cjeezy, but remain confused. Someone who is not taking allipurinol is advised to reduce their UA levels, usually by a more suitable diet or weight loss and exercise. Surely if they get their levels down to, say, 4.5 to 6.0 they would be in exactly the same position ? ie dissolving crystals increasing their levels back up again which could trigger an attack. As its extremely unlikely that a gouty without meds could get any lower than this, then that means someone without meds is NEVER going to be free of gout.

    I'm also a bit confused by the numbers, to be honest. We are advised to get below 6 mg/dl as below that figure existing crystals will dissolve. Right ? I think I've also seen somewhere that above 6.8mg/dl they start to form. Is that right ? This suggests that between the 2 numbers nothing much happens. If, on occasion, someone goes above 6.8, but most of the time they are below that figure – indeed below 6, why is that such a danger ? Surely it has to be better that way than to be nearly always above 6.8, which I suspect where most people with gout are at.

    Nothing surprises me with this upside down, Alice in Wonderland condition where nothing is as it seems, so perhaps my logic falls down somewhere…Confused 

    in reply to: Time to start allipurinol ? #6597
    nokka
    Participant

    How so ? I can't see how decreasing my UA levels INCREASES the chance of having an attack. (apart from the crystals melting reason).  I appreciate that it may be that I have a higher chance than if I am on 300mg and therefore have lower UA levels. But surely my chances are better than if I took nothing.

    My feeling is that I am a borderline case and it is touch and go whether I need the drug or not. A low dose, logic suggests, will get me below the danger levels the majority of the time. Unless I'm missing something ???

    in reply to: Time to start allipurinol ? #6594
    nokka
    Participant

    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.

    in reply to: Time to start allipurinol ? #6489
    nokka
    Participant

    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 ?

    in reply to: Time to start allipurinol ? #6481
    nokka
    Participant

    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.

    in reply to: Time to start allipurinol ? #6444
    nokka
    Participant

    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 ?

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