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  • in reply to: Not sure if I took or missed my AlloP tablet today #9679
    trev
    Participant

    Veggy- If you think it's tricky, wait till you're taking 5 or 6 meds daily-and are 20 yrs older. Then you will get some cocktails with fudged doses…

    Now's your chance for research– take your normal dose later in the day so the bulked dose will be laid off, if already taken- and ,if not ,you still get one in. If you feel any effects to the bad, then take the next dose [tm] later in the day- also and then trim times back to normal. [This way you get an absolute max of~450mg]

    Age 'n experience… 🙂

    PS: As you're established on the AP anyway, it would only cause a blip in your regime either way,  so long as you haven't any 'lurking' side effects.

    in reply to: Benzbromarone #9641
    trev
    Participant

    Thanks GP- The medicine alternative to AP that cropped up in the surgery was Anturvan (Sulfinpyrazone) which has been mentioned here.

    I think it's yet another 'hard on kidneys', but that can be monitored and is probably a better option than long term high SUA.

    Uloric didn't scan, but I'll ask if Adenuric is available.

    in reply to: Benzbromarone #9633
    trev
    Participant

    I'm wondering if the OP -Marky ever got established on this Benzbromerone- it seems to be useful, if liver toxicity is watched for.

    I'm not sure if it's available in the UK -NHS.

    in reply to: Kidneys -Estimated GFR #9624
    trev
    Participant

    I think the adjustment for Black ethnicity is because of their higher natural muscle mass , Zip. This increases Creatinine residue in the blood.

    I think the comment about levels 'holding up' * for a long ways towards failure is a good caution.

    An eGFR of 30 is considered to be getting really worrying, from what I read. 60 without any other symptoms would seem just OK.

    tbh- I think more frequent blood tests would be helpful during time establishing drug regimes that could affect kidney [and liver] function- as they are rather essential items, to put it mildly!  This would cover the above* issue to a large extent.

    In the long run, a standard blood test is better than having dialysis/ICU suites in hospitals

    Long term meds  are a big help, or they wouldn't exist- but I wonder if 'fire and forget' drugs aren't all too easy an approach, that the medics adopt as standard.

    If only the promotional effort that goes into Drugs sales was pushed in this direction…

    Sound of pigs flying?

    Needles too cheap?…[even if subsequent analysis isn't] – maybe a meter like Kernels' for Creatinine?

    in reply to: Kidneys -Estimated GFR #9621
    trev
    Participant

    Yes, Lyn- I have an annual check on blood and the creatinine has been stable @95 – up till now!

    However as I was getting a return of tenderness in the old area under L. ribs I was wondering if the eGFR from that Creat. rdg. was really that useful. From the calculations on Wiki, which has a calculator for eGFR, I got a figure 10% lower than on the lab assessment- which is in the wrong direction. However, I read that the lab calc may be more accurate due to measurement considerations. I see my figures as on the wrong end of good!

    Either way, the figure of 70 or 80 is in scale for 'normal' [59-300]- yet the Wiki calc. flags this as potential stage 2  kidney disease!

    Many meds say watch out for kidney issues- AlloP says this, and for liver too- but presumably your Dr knows this and unless you get other reactions, as I did, you may find no problems.

    Your having had a transplant is bound to sharpen your appraisal somewhat on this!

    The other factor in this is that urate stones are transparent to ultrasound scans. Ain't life great?

    in reply to: Controlled gout with allopurinol. So is jogging OK? #9576
    trev
    Participant

    @ Glaus Q: Not had a flare up until I started jogging.

    Don't assume it was just the jogging. Lowering urate triggers old attack sites, if not new [to the owner] as well  for some months into treatment.

    I have a kit for SUA testing from Kernel manfr;. it works fine to 5%  [that's good enough] and can monitor progress every few days on [or off] meds and diets. More frequent testing is done by some- and if graphed, can show interesting trends, like VegGuy here.

    I personally think normal metabolic daily variations can obscure the meaning somewhat, & also unless your technique is A1 , tbh.

    AFAIK- blood sampling is the only ready way to get urate status. Urine and saliva strips test the outcome of over acidity but not the body load held in the blood. If it wasn't so subtle, gout would be better forseen/handled, no doubt!

    You really need to get actual figures on SUA- leaving Docs to 'mutter asides' gives too much hostage to fortune. 5mg/dl is thought OK. [~300umol – multiply mg X 60 is close enough]

    [Bear in mind 7 is considered within 'normal' range- for a NON gouty!]

    They don't all seem to understand the movement of urates [which is complex enough to the layman, true] and also don't like overprescribing AlloP or Colch either, as they are powerful drugs with serious side effects.

    I would say, ease off heavy joint (esp. shock) activity and let the  meds 'do their stuff ' for a few months and then get back slowly, next time. You were probably a bit over-enthusiastic whilst resetting your gout back to 'controlled' state [not 'cured' , btw] this last time.

    All the same you appear well on track -with a positive approach that's very necessary.

    in reply to: Controlled gout with allopurinol. So is jogging OK? #9571
    trev
    Participant

    Yeah, Take it steady!

    People forget that gout takes years to establish and won't go overnight.

    What are your SUA figures- and have you started on AlloP ?

    in reply to: Controlled gout with allopurinol. So is jogging OK? #9569
    trev
    Participant

    OK Glaus..2 more things: Do you use those shock absorbant insoles? This would also help with the weight impact -even if you kept to walking- I didn't really mean jog, right now.

    On that- what about speed walking? It looks strange but it must be hard to do as they all  look so darned wirey!

    You're probably relatively fit, compared to many- Maybe you'll have to forgo the 'burn' till you get your UA under control. Figures?

    in reply to: Controlled gout with allopurinol. So is jogging OK? #9559
    trev
    Participant

    Glaus- Sorry about the flat terrain- how's about carrying a weighted pack? Lots of joggers do this for training -and it beats being overweight Embarassed

    The other thing is , my exercise bike has a torsion tightener on it- Can you lean on that to get more sweatabilty?

    When I'm out on an old 3 gear Sturmey Archer bike it's hard work uphill for the same reason. Everything these days is TOO easy, even trying to suffer for our health Wink I've since loaned out the bike, too…Cool

    The other old standby for low impact is swimming.

    Some wag said sweat is the best Cardio medicine- and I'm not sure that gout doesn't have connections in this dept.

    [Arterial / veinous inflammations from SUA = High BP?   – & Hypertension [HT] is a known factor in gout]

    in reply to: Controlled gout with allopurinol. So is jogging OK? #9557
    trev
    Participant

    @ stay active without causing gout attacks …

    Try hill walking on a hot day with a group 20 years younger than you for low impact sweating!

    I did this last 2 w/e's on some difficult meds currently- maybe that didn't help and I am overweight.

    The point is -all the sleepiness and fluid retention, kidney hammering etc that meds cause seem to get one into a chair and die off, if not carefull !

    Something like this- too steep to farm, in the distance..

    [Swift Hill Nature Reserve. nr. Slad, Gloucs.] Lovely area..Laurie Lee country!

    in reply to: Beer, uric acid testers #9543
    trev
    Participant

    Nick- You are getting on top of this slowly!

    Don't take too much notice of number changes. Food intake during the day and your metabloism will affect your SUA readings by more than 0.3 easily. I can't give numbers as it was lost in all the ups and downs [we find with this illness].

    Also, your level would fall if heading into an attack of some sort, too.

    Thus, at 8+ I can see why , with all your earlier efforts your Dr went for the meds- there's only so much one can do and you have kidney issues, too. Thus a slow approach with these meds is in order. Zip is very good on kidney stuff and will probably comment later…

    Certainly you are lucky to escape a 'hard' attack as from histories here and my own experience , the body remembers 'the enemy'- and each one can get worse till you really do feel like 'getting out the shotgun' !

    in reply to: Reporting back re Allopurinol use #9528
    trev
    Participant

    I should know better , using acronyms… ULM means urate lowering meds. see? – Obvious Wink

    Patient reports of side effects [ie:unwanted  results] seem to cause 'intstitutuional deafness' in medics.

    When the list of useable meds shortens, in time- the affliction worsens.Frown

    I once had a nurse write the exact oppisite of what I'd said [in a report],even though it was crucial to the examination. I didn't read it for some time, however.

    Makes one quite philosophical about life really…

    in reply to: Reporting back re Allopurinol use #9516
    trev
    Participant

    One issue is Stevens 'somethings' syndrome which has 1/3000 , but majority survive- looks bad tho!

    Another figure was 1/1000 for something else. sorry to be vague but the figures don't matter too much- they are low if you need to take the med, but not low enough odds for general use.

    My main point was 100s of thousands of people benefitting- and a handful having probs.

    I need to find more actual content on CV disease relating to High SUA- plenty of mentions in passing but no hard research.

    Is this all due to the risks of using ULms which would have to be used for hard figures to be gained?

    in reply to: Reporting back re Allopurinol use #9499
    trev
    Participant

    Very laudable J! growing your own is good in so many ways.

    I think I will split the Hibiscus sachets between two cups, as it's quite strong anyway.

    On the anti- oxs , I may go for a cheaper version- without the Vit E, [which can actually raise BP in larger doses].

    http://www.ventris.org.uk/heal…..sph030.htm

    Have you ever tried this?

    I think ,intuitively, that anti ox approach will assist in the AlloP getting acid reactions 'off' my arteries & viens.

    On this important point I've seen numerous reports of lowered SUA helping High BP- but with the comment that AlloP has 'too tricky to justify' side effects, which we know about here. 

    Looking quickly at the figures it's possible that if all my local populace of 300K were on AlloP , one would die per annum from its' use and 250K, if gouty, would improve! A few thousand would die as a matter of course of old age, etc. I'll be happy to work with 200mg dose.

    in reply to: Reporting back re Allopurinol use #9489
    trev
    Participant

    No probs J. I may well give the 'one a day' Vguard a try as, unlike meds, more is not always essential -as I think the benefits are more linear. For £20 it may make a difference ,as I do get fre NHS meds now 😉 so can indulge occasionally. If the anthocyanins could be made into a drug it would probably not work as well, anyway..

    Also, supplements is a free market, which though generally trying to help -suffer from the' sales push' too readily. All human 🙂 so like the Omega3 half recommended is still more than most people get.

    Blueberries aint exactly cheap ,either.

    in reply to: Reporting back re Allopurinol use #9468
    trev
    Participant

    Thanks J- I have tried the tea as I saw a report last year about it. I found it too sharp and never got past a couple of cups daily.

    Maybe now I'm not so worried about acidic intake [on AlloP trial] – I could venture again, but tbh, I do love our old standard British 'cuppa'.

    I have learned on even that- to keep consumption down to 2 or 3 cups per day, though.

    I will look up the VGuard, too.

    PS: I've looked up Vascular Guard  on another site , [couldn't find it on your referred one]

     

    which looks OK, componentwise – if rather expensive @ £40 / months supply.

    in reply to: Reporting back re Allopurinol use #9465
    trev
    Participant

    Thanks J, That article reiterated what I'd seen earlier. Like gout, treating symptoms is the easiest thing to with BP and this smaller artery approach seems totally valid, intuitively. Exercising 30 mins a day on the mind and also seperately on the body is harder to prescribe,along with diet changes. I think meds make good supporters, but bad controllers!

    I had stopped taking [apart from scattered dips into the remainder] Ubiquinol, as it's expensive, but have got back on it again.

    On the Natto- I don't take blood thinners- but will bear in mind, as I bank on the link with SUA elevation and High BP bearing fruit!

    in reply to: Reporting back re Allopurinol use #9458
    trev
    Participant

    Yep! , Jules.. @ You may avoid damage to the cardiovascular system to get it [SUA] to a normal levels !

    When I mentioned to the Dr treating my high BP that high SUA can affect CV outcomes Dr said their was no evidence of this.

    That's when I decided that I had to take matters in hand, as I know AlloP has been shown to reduce BP in teenage N.Y. patients, a year or two back , in a trial.

    Also I saw online an article about acids affecting blood vessels by encouraging  protective plaques and thus high BP. It was built around BP exercises I tried a year or two back- and I intend restarting these too.

    It's the old problem of lack of practical awareness around gout -and your experience reflects the best side of people using their own endeavours to move forward.

    I hope to find similar success eventually Smile

    in reply to: FRUCTOSE????? #9414
    trev
    Participant

    @ Zips: The solution is simple: merely toss out your allopurinol and colchicine and give up all fructose Surprised

    Yes. We do have to experiiment a fair bit on our gout Frown  -but that's a step too far ! Cool

    in reply to: Beer, uric acid testers #9411
    trev
    Participant

    This post was just getting buried and I dug back for it.

    Yes Nick, you're a lot like me on your symptoms and approach to Gout, though a longer time at it. More reason to be glad of success now- but bear in mind over that long time you will have urates buried around your body so be wary of celebrating too early.

    A good thing to keep the Bi Carb down- I think 1/2 tsp max. daily is recommended for over 65s- though I daren't risk it at all with my BP.

    I agree will power [and patience] are factors that come in life management a lot and hopefully you can keep the AlloP in the back locker for a long while yet Smile

    Water lack is not recognized as we get older- I've often thought about this and read it up. I think death from poisoned sources was a bigger risk than gout in those really VERY early days- so the body learned to trim out the risk and gout is a part result for us unlucky ones.

    PS: Our survival from other illnesses would be better, though!   

    Cheers & a FEW beers Wink

    in reply to: Reporting back re Allopurinol use #9410
    trev
    Participant

    Yeah, Good news of a great turnaround!

    in reply to: FRUCTOSE????? #9114
    trev
    Participant

    @VG – I got that you and Zip were almost on the opposite side when it came to to diet/AlloP

    This is broadly true -but I'm more tolerant Embarassed

    My take is if you can manage without meds for any condition that is a laudable path, so long as attendant risks are acknowledged.

    The drug Co's hide the side effects of many chemicals in trial flummery,and if this was not so more people would rely on them. Fact is- it's nearly always better to use natural methods of cure [IF Possible!] , as by definition all others are unnatural, like it or not.

    Back to fructose- this is bad component of modern diet because it IS like a drug to many who can't manage without a fix.

    Using fruits is a very healthy way of using your 'allowance' on sugar intake as the vitamins and alkalising effect are plusses you don't usually get with sweet products,  inc. drinks. [See high sucrose figure for dried apricots, for instance- though alkalising]

    Otherwise, thinking about the meds/sucrose issue- it's like taking drugs for no good reason apart from short term lift with long term bad effects.

    So sucrose worse, in my book, for this reason.

    On diet in general, everything in moderation is always a good watchword.

    A handful of nuts a day is plenty for protein, though amino acids are needed widely by the body-and need to made up from other sources to balance out.

    in reply to: FRUCTOSE????? #9361
    trev
    Participant

    VG- I don't know where you get this 'diet will fix all' take with me.

    I never say that. In my case I mangage without ULMs, as I can do that right now. I've said this leaves me at risk from urate left in my system- & also risking further attacks.  I've suggested to quite a few posters here that ULMeds are probably the best route for them.

    I've no idea what caused your gout in detail ,but you know full well the factors.

    You are on the AlloP track now -so will have to tolerate 'less deserving' cases 'getting away with it'  Embarassed

    in reply to: Beer #9354
    trev
    Participant

    @GP: You are certain to be consigned to gouty hell unless you worship beer on a daily basis.

    Some mishtake here, surely?

    Anyway on the subject of good/ bad there's plenty of evidence that moderate alcohol consumption is beneficial.

    It's also said that the human race would have died out by now- but for its existence ! Smile [Men and women don't seem to like each other that much looking at family law].

    The reason it's stalked around is partly a backlog of religious habit and naany state not wanting encourage the minority who are addictive personalities- and get alcoholic.

    They would find something else anyway, if alcohol got too respectable -['ol cynic] also the Gov't can tax it to the sky if it's kept as 'baaad'.

    Drink wine [red pref] for less gout impact, is my copy.

    in reply to: FRUCTOSE????? #9352
    trev
    Participant

    This is not an 'either /or' question.

    If intakes of suger and such have been going up by large amounts over the years -then the base line for gout can likely have shifted up a couple of notches. Throw in genetics, alcoholic drinks, obesity and the rest we have a winner!

    Thus, though the 12% may be directly attributed to causing gout a good half of the remainder could easily be compromised towards an earlier break out of gout as the curve will probaly be bathtub.

    Look at the age profiles of new cases here recently! Not traditional.

    Witn some circumspection, us oldies can hold back the flood and I have, as reported lately reduced my adherence to quite so much fruit 'alkalizing' diet -as by urine checks this did not do the trick, at least in the short term and I'm still attack free Laugh

    If you're taking AlloP etc., you will not notice these issues so readily- that's the subjective problem.

    in reply to: Beer #9322
    trev
    Participant

    beer has more fluid per unit of alcohol- so it would seem kinder to the body in principle. I have found beer a trigger myself and not wine to any extent. I don't do enough hard spirits to judge but they are said to be half way between beer and wine [ wine being generally ok]

    I put some of the issue of beer down to the fact that it is made from town water which may have fluoride, chloride, water treatment residue , pesticides , nitates etc. Low level, addmittedly- but all a load on a body already stressed.

    On top you have higher purines and yeast residue, which are bad for gout too.

    Wine is likely to have much less 'extras' !

    So though I too love real ale, I treat it with caution. Certainly within recommended daily limits,  say ~ 1litre [2pints] once/twice a week max- that's with being clear of attacks of late, only! Cool

    in reply to: I am the newest member #9321
    trev
    Participant

    Hey, you 2 🙂 Welcome to the thiazide avoidance group!

    There's not doubt that  these class of meds are triggers for Gout. Zip here will testify to that -and I got it from a similar drug. It has gout on the label as a side effect.

    I stopped all diuretics this year and my symptoms have eased right off though other factors have also changed 'to the good' to assist in this. No 'proper' attack in over a year.

    So ,effects can be backed off, but once you have had an attack you stay vulnerable for ever- due to the genetic weakness getting flagged, by your immune system.

    Fot the BP meds- they ALL have side effects like any useful med- and it's usually a case of pick your poison, but for gout the meds are somewhat less broad in their lack of toleration -and people here swear by them, if tolerated. There is always the risk of longterm side effects, but untreated/unmanaged gout is worse for risks in the long term result.

    Lifestyle choices can help a lot but the balance is very much an individual thing.

    Keeping fit is hard whilst struggling to manage gout – but it will definitely help keep you mobile and cheerful- so stay with it as much as possible while getting a fix on your SUA numbers and gout status overall.

    Yes! The pain of gout is not appreciated by the gout free, including most medics, sad to say. Hiopefullyu, this will change with more online feedback showing up.

    trev
    Participant

    High SUA doesn't always mean gout by a long way- but Gout means High SUA.

    You may need to address the high SUA for reasons other than an attack as there are secondary effects on cardiovascular system by a lot of reports.

    Diet [for Gout]in your case would not have as much an impact as losing weight would generally for good health'

    Oats are supposedly on the bad list, brown rice is always better then white etc. -but that high SUA leaves you vulnerable and you need good advice/monotoring on that,  to go with your valid early concerns.

    Forewarned is Forearmed!

    in reply to: New to Gout but low UA Levels Mystery? #9255
    trev
    Participant

    Short term changes in diet have no real bearing on long term problems- which is Gout.

    Your SUA could be quite volatile after an attack and change through the day anyway.

    It may be that it will take some time to see what is happening with your SUA and any other issues that may be confusing diagnosis.

    Certainly a reading @6+ mg/dl and cold feet could bring on an attack by all our calculations here!

    With care you could manage this without meds imo, but not on a bad diet and your old levels of hooch tbh.

    in reply to: new gout treatment (paper) #9252
    trev
    Participant

    I  downloaded the file at no charge, with no problems.

Viewing 30 posts - 151 through 180 (of 573 total)