Forum Replies Created
-
AuthorPosts
-
Keith Taylor (GoutPal Admin)Participant
Sorry if I was in the wrong section, I didn't realize it until it was already posted.
Keith Taylor (GoutPal Admin)Participant2 very good pages. The second one is easier to read if you choose the print layout : http://www.medscape.com/viewarticle/472684_print
It is interesting to note that both these articles raise questions, which emphasizes just how much there is still to learn about gout.
Keep 'em coming.
Keith Taylor (GoutPal Admin)Participantdgalati said:
i do have high Uric Acid in the blood and my doctor did address it at the last meeting suggesting Allopurinol. My research on allopurinol (all Google) suggests it has harmful side effects if used in the long term.. I know that the high Uric Acid also has harmful side effects. Is there nothing, pharmaceutical or natural that can lower the uric acid and not give the substitute side effects?
It seems to me that this is a question of balance – balancing the side effects of high uric acid (painful gout attacks, kidney stones, bone erosion) against the side effects of allopurinol.
Long term effects of allopurinol seem to depend on where you look. For example, a site selling a “natural cure for gout” cites:
skin eruptions, inflammation of the blood vessels, and liver toxicity
Whereas the Australian Rheumatology Association state:
Allopurinol can be taken for long periods to manage gout. There seem to be no long term side effects.
It is important to drink plenty of fluids to avoid a build up of the by-products of allopurinol (oxypurinol). Other than that, unless you fall into the tiny minority that cannot tolerate allopurinol, the risks are very low.
When administered properly, you start with a low dose that will identify any sensitivity. This will allow you to balance the risks based on your own experience. Because of your kidney history, I expect that your doctor will monitor oxypurinol levels, though the Journal of Clinical Rheumatology reports (Feb 2008) that “high levels of oxypurinol did not appear to relate to higher prevalence of adverse reaction.”
Keith Taylor (GoutPal Admin)ParticipantI have now had gout for 12 years, (since my nephrectomy). Additionally, I have high blood pressure for which I take Diovan HCT and high Cholestorol for which I began to take Crestor recently. Since the Crestor, I am experiencing very strubborn and painful gout, now in the baby toe. It really hurts.
i do have high Uric Acid in the blood and my doctor did address it at the last meeting suggesting Allopurinol. My research on allopurinol (all google) suggests it has harmful side effects if used in the long term.. I know that the high Uric Acid also has harmful side effects. Is there nothing, pharmaceutical or natural that can lower the uric acid and not give the substiute side effects?
Another thing crossed my mind. Could the Crestor have the effect of raising the Uric acid by weakening my one remaining kidney so that it does a poorer job of excreting the uric acid that my body is producing.
I like to eat, am a little overweight (10%) and have to get the pounds off. It may be the answer.
My current bout with gout is not responding to indomethicin (50 mg) nor cherry juice, nor water with one teaspoon of baking soda and not cochicine. The colchine gave me a massive headache and slight fever, coating (yellowish) for one day on my tongue and did not help the gout. Will time eventually do it?
For me, I think it is overweight and kidney function that need the help.
Keith Taylor (GoutPal Admin)ParticipantRob Shaw said:
Hi,
I have suffered gout for twenty years and have managed it by using indometacin at early detection however I seem to have aching joints most of the time now which I believe is gout related.
Hi Rob,
I don't want to sound contrary, but you haven't really been managing the gout. Indometacin is just a pain killer, so all you are managing is your pain. It does nothing to lower uric acid levels, so all this time, the crystals continue to increase.
The doctors have not really been as informative as yourself and I have tried using allopurinol on several occasions and the pain becomes that unbearable I stop using it.
The most important thing to realise is that, initiially, allopurinol can cause gout pain, and usually needs to be supported by pain relief. The second most important thing is that once started, you should not stop unless advised to do so by your doctor. Allopurinol is only effective for about a day, so once you stop taking it, you are back where you started.
Another strange scenario is that I drink alchohol in moderation about 3 times a week, however if i abstain from drink for a period of more than 10 days or so I appear to start to get more gout symtoms is this because the twenty year build up of uric acid crystals, when I give my body a rest from drink the existing uric acid starts to solidify and cause gout again?
There are many many reasons why a change in habits can affect your gout. Many people maintain that moderate wine intake can help reduce inflammation. If the drink is normally at the pub, stopping going out might encourage some stiffness through reduced mobility. Etc, Etc. I would not worry about this too much at the moment. The best thing to focus on is lowering uric acid. Once this is being monitored properly, you have a measure by which to judge things. Even then, it can be very difficult to work out what is happening with gout. The next best thing, after managing uric acid levels, in my opinion, is to focus on enjoying yourself.
When I come back from my holiday in April I am going to give it my best shot at getting rid of the gout. Bear in mind I have had gout for twenty years and my Urate level has always been above the accepted level. What do you reccomend as starting dosage (may be 100mg) and how long will I have to endure the pains for before It will eventually rid my body of the already established crystals
I would see what your doctor advises – it's a good measure of the level of care you can expect to receive, and you can discuss that here. Normal procedure would be to start at 100mg and increase until uric acid is maintained around 5mg/dL. Pain will continue for a few months, but should become less frequent and less intense every week, as long as the uric acid level is kept to around 5. After 3 pain free months, the dose might be relaxed a little to maintain levels around 6mg/dL. Make sure you continue to monitor uric acid even when you feel well – you do not want to go through this and fix your gout pain only to have the crystals creep back up again in future.
Please keep us informed of your progress.
Keith Taylor (GoutPal Admin)Participantapcoach said:
So when i start to monitor my uric acid, how much fluctuation can i expect? would it be 5mgs before a a seafood dinner would push it up to 9 mgs in a manner of hours, for example? Do you monitor once a week, month, few months? How does the knowledge of your uric acid level what you do next? do you take more allopurinol, baking soda, or refrain from beef?
i get that if your ua is 5 or under new crystals are not forming and old ones are dissolving so you want to be in that range all of the time.
I found it very hard to link specific events with changes in uric acid level. I presume this is due to mixtures of all the different factors that can cause uric acid to rise and fall. Not only does one need to consider what might raise uric acid production, but there is also uric acid excretion rates to consider. A significant influence is the formation of new crystals, or dissolving of old ones.
All this means that levels can fluctuate significantly during the day. I used to test daily at roughly the same time each day. Losing my uric acid meter when I moved house hasn't helped, but I expect I'll get another soon.
What I looked for was a falling trend. I probably tested more frequently than I needed to, but that is due to my gout obsession.
If you are on allopurinol, the same thing applies really, but values should never go over 6mg once your dosage is stabilised.
Another example of there being few simple answers when it comes to gout questions. My preference for frequent testing simply means thst I have some fixed data I can review. I can see from an upward or downward trend if I am doing things right (I definitely noticed a fall when I lost weight over a few weeks).
I have never tested frequently enough to test events over an hour or so. I suspect the results might drive you mad trying to work out which factor was causing a rise or fall.
Keith Taylor (GoutPal Admin)ParticipantVal Brown said:
I visited my GP and asked for a check on my serum uric acid levels but was told that uric acid levels were no longer checked since allopurinol prevented uric acid crystals from forming!!
Val, I'm so angry that I can barely type for my fingers shaking.
Allopurinol only stops uric acid crystals forming if the dosage is right. It is vital to accompany allopurinol treatment with frequent uric acid tests to ensure that the dose is achieving the correct uric acid level.
Name and shame the b*st*rd. I am sick and tired of NHS employees wasting my hard earned money on making gout sufferers worse.
The only thing I can suggest as a way forward is to call NHS Direct on 0845 4647. Unless you live in Yorkshire, and I'll send the boys round.
By the way, I think you are new to the forum. I'm not normally this vicious, but this type of treatment by people who really ought to know better really upsets me.
Keith Taylor (GoutPal Admin)ParticipantI first suffered gout 4 years ago (aged 64) and took 300mg allopurinol for the first 3 years – side effects for me were severe diarrhoea and rapidly developing cataracts. I stopped taking allopurinol just over a year ago and remained gout free until I had a very severe attack a few weeks ago. I visited my GP and asked for a check on my serum uric acid levels but was told that uric acid levels were no longer checked since allopurinol prevented uric acid crystals from forming!! He seemed quite dismissive when I said I would like to try to limit my gout attacks with changes to my diet and I was not happy to recommence allopurinol treatment. How can I keep a check on my progress if the NHS no longer offers serum uric acid level checks and I can't afford private treatment?
Keith Taylor (GoutPal Admin)ParticipantDerick,
I know you do not want to take allopurinol every day, but you are making too much of this and letting it get you down.
All you require of your doctor is enough allopurinol to get your uric acid level below 6mg/dL, and a frequent monitoring schedule to ensure it stays that way. Then you can do whatever you want with your life.
Life is not perfect. I had to wear glasses from the age of eight. There is no problem wearing glasses everyday. There is no problem taking allopurinol every day. These things are there to help us make the most of our lives.
Lots of people will give you advice about what you should and should not do. It's up to you to make the choices that work for you. It may not be fair, but people have a lot worse things to put up with.
Just take the allopurinol. If after a year or so you can see that your levels have stayed below 6, and you have had no gout pain, you might be able to take short breaks from allopurinol. Down the line, other treatments may become available. Who knows?
You can do nothing about most inherited conditions. At least with gout you can fix things very easily with a simple pill or two. Take control today – get your allopurinol dose set to bring uric acid below 6mg/dL and keep it there. If your doc will not do that, then find another – many simply do not understand gout or how to fix it.
Keith Taylor (GoutPal Admin)Participantcharlton said:
Firstly, as a newbie i'd like to say hi to everyone and say thanks for such a great website, I've managed to learn alot more about this condition in the last few days since finding this site than I have in recent years. Is it me or is there alot of contradiction about it on the internet?
Right about me, I'm 29 and I've suffered from gout for about 4 years, my doc first put me on allopurinal a few years back and I worked up to 200mg per day, this was working fine until I read that it can have long term side affects (one of which was kidney damage) in later life, so being what I'd like to think as quite young I thought I'd be at a higher risk of this because I'd be taking the medication for longer. So thats my first question, has anyone else heard of long term affects? So, becuase of this I stopped taking allo and tried endless types of natuarl remedies, and although I had a sore toe every now and again it wasn't cripplng…….. until last week and I've been in agony since, the pain has been so bad even the diclofenac the doc prescribed doesn't seem to make any difference, It felt like it might even of made i worse, has anyone experienced that before or was that just in my mind? Lastly, I went back to the doc a few days ago a he prescribed me prednislone, I'd never heard of this but it had almost instant affects and although didn't totally ease the pain it made it much much easier, so why don't they prescribe this more often?
So now you know more about me, I'd like to ask all your advice on what action to take next, I can't go through the same pain again because it's affected me at work but i'm dubius about taking allopurinal long term ! Have I got any thing to worry about ? And have I got any other options ?
Sorry for the long post but I've tried to give you as much info as poss
Thanks in advance
Charlton
Sorry I forgot to say that i'm not over weight, I do alot of fitness, eat quite healthily and i do drink alcohol but not excessively.
thanks
Charlton, please get off Prednisone and do not use it again. Although it may be the greatest drug known to man, it also has dangerous side effects. I used it a few times for gout and it certainly was a wonder drug. However, it slowly ate away at my hip and at age 44 I needed a hip replacement. Mind you, I only took Prednisone a few times, so I was shocked when I found out it probably destroyed my hip. I wish I had answers to rid you of Gout but the only advise I can offer is for you to watch closely what you eat and drink. I wish I took others advice, but at 51, I am chronic and have just started using Allopurinal after years of taking Indomethacin. I first started getting gout when I was around your age and have suffered with it often.
Keith Taylor (GoutPal Admin)ParticipantKvalhion said:
Ack, that sounds awful. Please let us know if you have been seeing a doctor regularly regarding your gout. Are you still taking allopurinol and/or indomethacin? Have you had your blood tested regularly for your uric acid levels to see if the Allopurinol was working? Also, what dosage (300 mg, 500 mg, etc) of Allopurinol did you try? Did you have any adverse side effects for Allopurinol?
Unfortunately the only way to really 'get rid' of gout would be to keep taking Allopurinol or Uloric if that works better for you. You need to measure your uric acid levels regularly and get it below 6mg. That should help to dissolve the crystals that have formed to reduce the tophi.
You can also try some of the other 'cures' on here, such as baking soda in water, black bean cure, cherry juice, etc. If your gout has progressed this far, though, you really need to be seeing a doctor regularly and monitor your progress.
Good luck and let us know how you are doing!
thank you for your reply . i do take indemecine, 75mg every 6 hours. when i have a flair up. and 300 mg of Allopurinol just had it uped from 100 mg. no real side efects. i live in a very small town in utah. just 3 dr.s in the area. mabe i need a speahelist.?
Keith Taylor (GoutPal Admin)ParticipantThanks for the reply. I'll do that.
I have lots of blood work panel results for the past two years and wonder if uric acid is included in these panels. I'll have to look them over and see if there is any listing for uric acid. I have gone over each one of them as they came in to see what levels are above or below norm. I don't recall any levels ourside of norm for anything called “uric acid”. My outside-of-norm levels were for calcium which ran consistently between 10 and 11, which is higher than it should be. This was being monitored for hyperparathyroidism.
Keith Taylor (GoutPal Admin)ParticipantSo true, metamorph, so true.
I suspect that both black bean broth and iron reduction can help prevent painful inflammation, but may not necessarily achieve what we really want – lower uric acid.
Obviously, there is nothing wrong with reducing pain, just so long as we tackle the uric acid problem as well.
I do wish doctors would treat hyperuricemia with more importance. Just because it is not producing immediate pain, there can still be slow buildup of uric acid crystals in the joints, leading to painful joint damage.
Keith Taylor (GoutPal Admin)ParticipantFred said:
Am back home now and wondering if I should go to my regular doctor. The attack is virtually over and I don't know what he could do for me.
He can monitor your uric acid. It is crucial if you want to control your gout in future to get uric acid out of your system.
Please go and get a uric acid test – be sure to get the numbers, because some labs report the result normal when it is way too high for a gout sufferer.
See what your doc advises, then come back to the forum and discuss it.
Keith Taylor (GoutPal Admin)ParticipantAfter a two year hiatus I developed gout in my left big toe joint while visiting in another state 12 days ago. Since my last attack two years ago had been mild I decided to ride this one out. Four days later gout developed also in my right big toe joint. Within a few hours I was at an Immediate Care. Since I am on Coumadin the doctor prescribed Colchicine and said it helps with the new onset of gout but that it would not have a dramatic affect on a condition four days old. He was right. Within two days the newly developed case was well on its way out. The older case was getting a lot better but it was clear it had a ways to go. It's now a week after I took the medicine and the worse affected foot is still not entirely back to normal. I am walking on the outside edge of that foot and can't yet put a lot of pressure on the joint. It's a little better every day. This was my third case of gout. The first was seven years ago (Vioxx helped a lot with that one). I think I'm going to have to pay attention now, research, and take some action in regard to exercise, diet, etc. , and what meds won't conflict with Coumadin, Metoprolol, Plavix, Creston, Aspirin. So far I have not run into any mention of these meds conflicting with gout meds in discussions of gout treatments.
Am back home now and wondering if I should go to my regular doctor. The attack is virtually over and I don't know what he could do for me.
Keith Taylor (GoutPal Admin)ParticipantIt is vital to monitor uric acid frequently during allopurinol treatment. If the dose you are on does not lower uric acid below 6mg/dL, then it is a complete waste. Your first step is to find a doctor who understands this, and gets your uric acid under control.
It will take some time (a few months, possibly over a year) to get rid of the crystal buildup, during which time you will need some gout pain relief – discuss the options with your doctor.
Keith Taylor (GoutPal Admin)ParticipantI suggest you to consult another doctor's opinion.
My first doctor who gave me allopurinal did not subscribed me with Colchicine which lead me to a big attack.
I saw another doctor and she said I have to take Colchicine for the first few months of Allopurinol treatment. she also said I have to stop taking Allopurinol immediately as it will just the situation worse. I have to take Celebrax and Colchicine for a few weeks to make sure no inflammation on my feet before I start my treatment again.
Hope you get well soon.
Keith Taylor (GoutPal Admin)ParticipantLife without allopurinol – finger.
Life without allopurinol – Elbow
Also consider what happens when your joints crumble from gout – too late for allopurinol then.
Keith Taylor (GoutPal Admin)ParticipantNo, no. With profound apologies, I was simply referring to the slogan and absolutely nothing else.
I must try to remember that daft comments do nothing to add to the message and merely become confusing.
Sorry
Keith Taylor (GoutPal Admin)ParticipantKvalhion said:
I want to make sure I get into the normal range of uric acid — last two tests before starting Allopurinol were 9.5 mg and 9.2 mg respectively –
Kvalhion, I know you've only just started on the allopurinol, but have you had another test yet, or do you have one planned?
I'd like to build up a profile of how a typical gout sufferer can use allopurinol effectively – many simply do not get the correct aftercare, so end up with inappropriate dose, or they quit because they do not see any benefits.
Keith Taylor (GoutPal Admin)ParticipantThis is also the conclusion that I am coming to. I need to test it personally, and get some black bean broth on the stove.
I'm also researching iron a bit more so I can try and understand it better and get some clear goals.
I do believe there are also other things that can trigger attacks in 4 areas:
- Push uric acid production
- Suppress uric acid excretion
- Affect the saturation point (increase crystal formation at a given uric acid level)
- Affect our reaction to crystals (severity of the immune response)
I'm a great beliver in the Pareto Principle. 80% of anything is caused by 20% of the factors that cause it. The tricky thing is finding which 20% of factors are the ones that affect you. If it is kidney malfunction then medication might be the only answer.
For everything else there's Black Bean Broth. [don't take that literally – it's a M*st*rc*rd thing]
Keith Taylor (GoutPal Admin)ParticipantOK, a bit harsh, and I don't want to discourage debate, so let me just explain my perspective.
I do not believe that you can control gout by simply reducing the number of gout flares, and there are two potential pitfalls from this approach..
A gout flare is the culmination of a process that starts with excess uric acid, leading to gout pain (U-D-R-P).
Once you understand this, you can see the two pitfalls of focussing on managing gout flares.
- You do not know if the flare is due to new crystals forming or old crystals dissolving. This is not just an issue with allopurinol – it applies to all uric acid lowering therapies whether medicinal or dietary. To avoid this, you must measure uric acid frequently and keep it below 6mg.
- Crystals can accumulate without giving the typical acutely painful attack. Though you might not notice this, it can lead to the worst kind of gout pain – the pain of crumbling joints. To avoid this, you must measure uric acid frequently and keep it below 6mg.
The message is: you must measure uric acid frequently and keep it below 6mg. There is no way that the odd cup of tea or coffee, glass of wine, or a shrimp or two is going to influence this.
Keith Taylor (GoutPal Admin)ParticipantLearn most of what you need to know about gout pain treatment in my free guide, but always bear in mind that your first priority is uric acid management.
You must get frequent uric acid tests. Unfortunately, you may have to push for this, as many doctors wait for the second or third attack before considering uric acid lowering therapy. This, to my mind, is very short sighted, because you can still be building up uric acid crystals in your joints and other tissues without always getting the typical excrutiating gout flare. Postponing uric acid lowering therapy simply leaves you with a longer pain phase.
The most effective diet is one that maintains your weight at the low end of the normal BMI range. Ignore most of what you read about purines – uric acid comes from the purines that your body produces. Very little, if any comes from purines that you eat. However, you should consider how much iron you digest. Most Western diets contain far too much iron, and there is clear evidence that this increases the risk of gout. Use the search box at the bottom of every page to search for iron.
Keith Taylor (GoutPal Admin)ParticipantI've seen several reports of magnesium being used to treat pseudogout, but none regarding normal gout.
Keith Taylor (GoutPal Admin)ParticipantThank you metamorph.
I've had a look at black soy beans (Glycine max (L.) Merr.). It seems that glycines (soy beans) are also rich in anthocyanins. I cannot find a direct comparison between phaseolus and glycines.
Good to hear that both work.
Keith Taylor (GoutPal Admin)ParticipantOK, spring chicken really, at 51.
Just feel old when the feet ache after doing my paper round.
Keith Taylor (GoutPal Admin)Participantcharlton said:
Is it me or is there a lot of contradiction about it on the Internet?
There's a lot of out of date stuff about purines. There's a lot of self promotion by people selling “cures”.
There's an obsession with pain relief at the expense of uric acid management, but unfortunately that is not limited to the Internet.
There are lots of opinions espoused as facts, but again that isn't limited to the Internet (or limited to gout)
Gout can be very complicated, or also very simple – take allopurinol, measure uric acid, relax and enjoy life
Lastly, I went back to the doc a few days ago a he prescribed me prednislone, I'd never heard of this but it had almost instant affects and although didn't totally ease the pain it made it much much easier, so why don't they prescribe this more often?
Prednisone is a corticosteroid. It supports our own natural anti-inflammatory steroid – cortisone. Unfortunately, prolonged use can inhibit our own ability to produce it naturally. It is only suitable for short term use.
i'm dubious about taking allopurinal long term ! Have I got any thing to worry about ?
I concur with zip2play. You need not worry about allopurinol – it is very well tolerated in most cases, and much more tolerable than crumbling gouty joints. It is sensible to keep hydrated when taking it so that it does not build up in the kidneys.
Keith Taylor (GoutPal Admin)ParticipantWell you know how to make an old man cry.
Thank you Metamorph, from the bottom of my heart.
And a big “thank you” to zip2play and everyone else who help make this a better place than I ever could alone.
Keith Taylor (GoutPal Admin)ParticipantOh davem, I hate it when this happens.
Allopurinol dosage is vital. If the dose is not taking you to around 5mg/dL then it is wrong. The only way you can know if it is the right dose is to have uric acid tests.
This does not mean that the gout attacks will disappear overnight. Gout attacks may continue for a few months as old uric acid crystals dissolve, but at least with proper dosing, you can be sure that the pain is not from new crystals, and that the end is in sight.
I recommend seeing a rheumatologist.
Keith Taylor (GoutPal Admin)ParticipantI also find much of this baffling. Human systems are so complex, as many different biochemical processes fight to maintain healthy levels of so many opposing substances.
My interest in alkalizing diet started from claims that baking soda could help gout. The alkalizing process has little effect on blood pH, as our body goes all out to maintain this around 7.365. There is fluctuation around this range, and 7.4 is logarithmically much higher than 7.3, so uric acid should be more soluble at this level and have a slight improvement on the point at which crystals form.
A lot of “shoulds” and “slights” there, so I guess I cannot claim that alkalizing will slow down uric acid crystals forming, but it might. The significant part for gout sufferers is that alkalizing the body, actually alkalizes the urine. This has a proven improvement in the risk of uric acid stones forming in the kidneys. (references to come when I write this up properly)
The baking soda treatment has a second effect, often referred to as the phenomenon of paradoxical intracellular acidosis. There are studies of sodium bicarbonate (and I think potassium bicarbonate – again references in progress) lowering pH in cells. Proponents of baking soda theory for gout claim that this helps dissolve MSU crystals, though I cannot, as yet, pinpoint specific research. I can find no evidence to suggest that alkalizing through diet produces similar effects.
So, my advice for gout sufferers in terms of alkalizing diets is that it probably improves general health, and it might improve the chance of uric acid crystallizing in the first place.
However, in terms of diet, I believe there are more important things to worry about. One thing that probably is not worth worrying about is purines. The more evidence I see, the less this seems unimportant. I have yet to correlate purine content with iron content, but it seems on first glance that a much more likely explanation for the statistical links between diet and gout is the iron content. In particular, free iron is important. Coffee and dairy products are both effective iron chelators, and both have been linked to lower incidence of gout.
Interestingly, as I struggle to get this topic back on subject, a number of studies have reported increased iron availability of beans when the husks are removed. It appears that the husks, which provide the nutrients for black bean broth are naturally chelating the iron in the bean.
I need to study this a bit more, and try get my head round some of the chemistry, but I'm suddenly seeing things in a whole new way. Either there is much more to this black bean broth than meets the eye, or I'm going down an avenue leading to nowhere.
-
AuthorPosts