Forum Replies Created
-
AuthorPosts
-
Keith Taylor (GoutPal Admin)Participant
Acute gout pain is the result of our immune system attacking uric acid crystals. If crystals are few, then the reaction does not reach the incredibly painful stage. I have certainly experienced numbness, which I am certain is caused by gout.
Please do not be misled by uric acid lab results that report “slightly elevated” or “within the normal range”. Because in most cases, these assessments are totally meaningless as they are simple lab testing averages that include people with gout. You need to know your uric acid number.
Keith Taylor (GoutPal Admin)ParticipantThank you Zip for your reply,
It would not be possible to check with the doctors in the past, but I do have twenty, .5mg Colchicine tablets on hand. Do you suggest to stop the Ibuprofen and do a trial run? I'm still taking about 800mg of Ibuprofen a day.
How would you suggest going about this test? I might as well use up the Colchicine tablets because I can't return them. Before I started the Allopurinol, I took 4 Colchicine tablets a day for a 3 day period, didn't seem to help the pain. I would be willing to use up the other tablets according to your advice on how to go about it.
Thank you, and have a very merry holday!
Keith Taylor (GoutPal Admin)ParticipantThanks Admin, I shall be sharing this with both of the specialists that I've been seeing.
I'd be interesting in hearing from anybody in the UK that has successfully procured Febuxostat.
Keith Taylor (GoutPal Admin)Participant“with short term pain relief as required.”
But what about colchicine or similar during the time allopurinol is getting rid of the old crystals?
Keith Taylor (GoutPal Admin)ParticipantThere should be no reason with current medication for anyone to be disabled by gout.
Allopurinol or similar uric acid lowering treatment to get rid of crippling crystals, with short term pain relief as required.
It is one of the most easily treated of the rheumatic diseases, though it does require a competent medic and a co-operative patient. The common causes of treatment failure are inadequate medication either due to under-dosing by the doctor or failure of the patient to take the medicine as prescribed.
Of course, the doctor needs to recognize gout in the first place. Unbelievably, in 2006, the poor soul pictured here was reported in Mandell's Clinical Manifestations Of Hyperuricemia And Gout. He had been referred by his doctor with unrecognized gout!
Keith Taylor (GoutPal Admin)ParticipantI particularly like the detail in the full version of that report (Vitamin C Reduces Uric Acid)
Among persons who were hyperuricemic at baseline (baseline serum uric acid >7mg/dl; n = 21), vitamin C supplementation reduced serum uric acid by a mean of 1.5mg/dL
As I have seen in studies of other uric acid reducing substances, the uric acid lowering effect increases in line with increasing baseline uric acid. Obviously, it might not be enough at the higher end, with uric acid levels over 9, but may be helpful for people who are just over 7mg/dL
Keith Taylor (GoutPal Admin)ParticipantNo help to you at all. Find a better doctor.
Keith Taylor (GoutPal Admin)ParticipantI was actually looking for something unrelated and stumbled across this today.
While only using 500mg / day, here is a double-blinded placebo-controlled randomized trial conducted in research units affiliated with Johns Hopkins:
“CONCLUSION: Supplementation with 500 mg/day of vitamin C for 2 months reduces serum uric acid, suggesting that vitamin C might be beneficial in the prevention and management of gout and other urate-related diseases.”
Keith Taylor (GoutPal Admin)ParticipantYes, they are all looking for 3.0mg/dL – that, or love (sorry, I'm increasingly, festively giddy).
Pain is not a necessity for you now. It might happen, but the chances are much less than they would be if uric acid level had remained higher. Let us hope by March that your doctor cannot find any crystals.
Keith Taylor (GoutPal Admin)ParticipantLR said:
Also, can forum members shed any light on the debate concerning whether elevated uric acid levels long term can damage one's kidneys and arteries? Both of the aforementioned doctors have told me that the jury is still out on the question, but I'm not entirely convinced.
The jury isn't so much out, it is just that some members were asleep when the latest info came through.
Those that heard Mohandas & Johnson in “Uric Acid Levels Increase Risk for New-Onset Kidney Disease” will be doubtful of a verdict if all they heard was the conclusion:
although the concept that uric acid might have a role in kidney disease once suffered a requiem, it has undergone a revival and seems deserving of additional study. If indeed it represents a remediable target for intervention, then a new chapter in the treatment of kidney diseases may result.
Perhaps the thought of a new chapter made them sleep through (what I think is) the latest evidence from Obermayer et al:
the risk for incident kidney disease increased roughly linearly with uric acid level to a level of approximately 6 to 7 mg/dl in women and 7 to 8 mg/dl in men; above these levels, the associated risk increased rapidly. In conclusion, elevated levels of uric acid independently increase the risk for new-onset kidney disease.
Maybe you could send your doctors a little light festive reading in the form of High Uric Acid And Increased Kidney Disease
Keith Taylor (GoutPal Admin)ParticipantFebuxostat (marketed as Adenuric in Europe, as opposed to Uloric in US) is licensed for gout in the UK, but the manufacturers can't cope, so the Government (through NICE) has withdrawn the requirement for the NHS to fund it.
That decision will be reversed once the drug is available.
In October this year, Ipsen of France, who have the manufacturing rights, struck a deal with Italian pharmaceutical company Menarini to manufacture and promote throughout Europe. They expect to launch early 2010.
That, of course, is the official view, and I have no idea on the practicalities of getting hold of febuxostat. If you find a genuine source, your doctors should be supportive in supervising the treatment, as the license is OK – it is just manufacture that is slow.
Keith Taylor (GoutPal Admin)ParticipantGoutPal says – Do NOT Buy L-Arginine at HerbsMD.com.
It is full of spam, and will bring you a nasty case of gout.
If you think it will do you any good, let us work together to find the cheapest source of safe spam-free stuff.
Thanks for the Heads Up, zip2play
Keith Taylor (GoutPal Admin)ParticipantUnfortunately, I did not test the uric acid level before starting the Allopurinol. I checked with the lab here and the scale is mg/dl. In March when I get on the medical plan here I will ask the doctor to take a sample from my ankles to see about the crystal deposits.
3.0 mg/dl is what everyone is probably looking for. Will I still experience pain for a long time while the crystals are dissolving? I have had this condition since 1992, but it has gotten progressively worse since 2002. I appreciate your concern.
Keith Taylor (GoutPal Admin)ParticipantHow long is a piece of string?
If all you are doing is taking pain killers, there is absolutely nothig preventing gout attack following gout attack in what seems like a continuous episode.
Uric acid management is the only way you cn predict risks of gout flares.
Keith Taylor (GoutPal Admin)ParticipantWhat were uric acid levels prior to allopurinol treatment? Are you sure the scale is mg/dL?
Keith Taylor (GoutPal Admin)ParticipantThe answer depends entirely on what your uric acid level is, and what you are doing to manage it.
Keith Taylor (GoutPal Admin)ParticipantThanks Mike for taking the time to explain this. I don't think zip2play was underestimating the effort required to produce proper trials. Maybe, like me, he is getting fed up with people who produce less than perfect studies, then they get quoted all over the Internet as if they will cure gout.
It is very frustrating.
One thing that I have learned this month is that almost all uric acid studies are irrelevant to gout sufferers unless they have been done on gouties. Research on tea, which I am currently reviewing shows no effect on people with normal(*) uric acid levels, but will reduce uric acid level in gout sufferers.
(* that is clinically normal – not the statistically average “normal” that some doctors foist on their patients)
Keith Taylor (GoutPal Admin)Participantzip2play,
For over seven years I've professionally assisted in the study design and been directly responsible for the data management for geographically-distributed longitudinal studies and clinical trials for a leading research university in the United States, and I wanted to provide some feedback on your comment regarding how simple it would be to perform the simple double-blind study you propose, or any study for that matter, double blinded or not.
Designing a study, even a “simple” study, takes a great deal of effort and money if you want results that will stand up to peer review, because there are numerous factors to consider in several disciplines, including medicine, statistics, and information technology; you have to find a doctor who is smart enough to ask just the right question; then you have to get a statistician involved to get that question asked in the right way; then you have to get a good data manager to make sure that the answers are collected, maintained, and analyzed correctly; then you have to get the statistician and the data manager to work together to make sure that the data is analyzed correctly at the end of the study. There are hundreds of things to consider before even the simplest study is undertaken. For example, just one part of the study design you have to do is to thoroughly weed out perspective subjects who have medical histories or other factors that would impact the study, this is seldom easy to do. Should you only study one sex, or nonsmokers, or one age group? In the study your proposing any one of those factors might cause the results to be vastly different.
Questionaires are almost always used for medical research, both before the study to select subjects, and usually during the study to gauge compliance (how consistently has the subject been taking their vitamin C in this case, and for any number of other reasons. It is true that, where possible, it is preferable to use direct observation (for example, blood tests) to collect some of the data, instead of questionaires, but questionaires are almost always used at some point. But that direct observation comes with a high cost. The subjects have to make several trips to the clinic to have their blood drawn), the blood has to be tested, and you quickly realize that your talking about a hell of a lot of people, time, and money.
All of this work is expensive and time consuming, and the competition for the limited research resources is very tough. Drug companies have no financial motivation to pour research money into things they can't make money on like vitamins, so that leaves the research you are suggesting to educational researchers. Educational researchers get the bulk of their research money from the government, but competition for these funds is keen, so you better write a damn good grant proposal, then pray that you get funded. This system is scewed to reward the best grant writers, who are not always the best researchers.
I don't have time to do this right now, but there problably *are* some results from double blind studies on this question available from Google Scholar. Although the researchers might not have been directly asking about uric acid and vitamin C, they might have noticed some kind of relationship while looking at something else.
As for your closing statement: “Remember, anything that is reputed to cure ALL diseases probably cures NONE.” I would only point out that anything, including vitamin C, is only what it is, and its properties, like whether it cures a given disease or not, or its color, is, of course, not dependent on the claims that people make about it. In other words, if I were to put up thousands of websites that said that quinine cures every known disease in an effort to make a fortune creating a new market for quinine, that wouldn't make quinine any less effective against malaria.
Keith Taylor (GoutPal Admin)ParticipantGout will not cause it directly, but the uric acid deposits that cause gout pain could build up to the point where blood vessels are constricted.
As a friend of mine has just had half her leg off due to circulation problems (not gout related, but probably smoking related) I'm a bit sensitive to this at the moment. PLEASE get it checked immediately.
Keith Taylor (GoutPal Admin)ParticipantTaken ap for almost 6 months.
Had the usual symptoms, dizziness, heavy eyes, drowsy, occasional headache for the first two or so. Also had soreness like on the edge of an attack for 2.5 months or so. Gone now are all the symptoms and side effects. I can eat whatever as long as I remember my pills.
Works great … was tough to power thru at first.
Keith Taylor (GoutPal Admin)ParticipantThough health shop supplements rarely have sufficient active ingredients to have much effect, it is never wise to mix medications with supplements unless you know exactly what is in them.
I have not used Naproxen, but I have previously been advised that paracetamol was safe with ibuprofen (though at the time, I was under medical supervision). It would be best to check with your doctor first – especially as it means that your medical records can be kept accurate.
Keith Taylor (GoutPal Admin)ParticipantColchicine manages pain.
You need to lower uric acid levels to get rid of the crystal deposits.
Keith Taylor (GoutPal Admin)ParticipantBMI is a good indicator for weight control. It is not a perfect measure, but it is a good ball park indicator. If low-normal BMI does not bring sufficient reduction in uric acid, then other factors need looking at. I need to look into this further, as I am not certain if there is a difference between the uric acid effect of different tissue types, so not sure of the relevance of fat%. The main point is that your body is a richer source of purines than what you eat, so the less there is of you, the better it is. On the downside, rapid weight loss makes these purines much more available, so weight loss needs to be gradual, unless guarded by allopurinol or similar.
The exercise and iron angle is an interesting one, on two counts. Firstly, you've pointed me in the direction of what seems to be a rich seam of relevant research (though early indications imply that food intake has a much stronger effect on increasing iron, than exercise does on reducing it). Secondly, your quote is from the full $34 report, whereas poor old me only has access to the free abstract – do you have something you care to share? (private message is fine, if this is restricted)
I do not have a specific spreadsheet available, but I was wondering if there is any interest in me making one.
Keith Taylor (GoutPal Admin)ParticipantThank you for this article. It completely describes what is happening to me. I am 36 and I have had gout attacks in the past since I was 26, but then a new phenomenon hit me this year. It felt like a pinched nerve in my lower back, kind of like the pain when you give too many “piggy back rides” to children, which is what I did. Then a shooting nerve sensation would go from my lower back to my left but cheek, then all the way down to my leg and end around the calf. I was like WTF? So I thought it would go away after a couple of days, and it's been now 3 weeks and it's still there. This is serious. And like many clever dummies I am on the internet looking for answers instead of going to see a doctor about this.
So thanks again for the article, I have what is called Sciatic Nerve sympthoms, which is either a herniated disk or crystaline deposits around the herniated disk. I will now take some Colchicine and hopefully this goes away soon. I will let you know the results.
Keith Taylor (GoutPal Admin)ParticipantIf you are looking to control through diet, then weight control is more important statistically than purine control. Also iron control is probably very important, but difficult to change short term.
In your uric acid range you probably stand a good chance of diet control. It is not as simple as setting a target to guarantee zero attacks.
If you stay at or below 6mg/dL, you will stop new crystals forming, and prevent attacks from new urate deposits.
Diet control of uric acid is no different in theory from allopurinol control. There is a phase during which old crystals dissolve and they MIGHT cause a gout flare. The lower you get your numbers, the sooner this phase is over.
There is no quick fix here – the plan depends on setting targets according to a proper assessment of your current situation (height, weight, typical diet, uric acid history) and continuing review of changes to these along with any gout flares. A spreadsheet might help – let me know if you need help with this (I shouldn't assume that everyone can use spreadsheets)
Keith Taylor (GoutPal Admin)ParticipantThat's a good plan.
To anyone else who is in a similar position. Even if you believe you can manage without allopurinol, the uric acid testing part of the plan is vital. As bagodonuts says, “Gout diets are near impossible to follow, and once I thought I knew what my trigger was, something else would trigger the gout.”
The only way to manage gout is to manage uric acid levels – you cannot rely on the incidence of gout flares, because these can happen when you lower uric acid (though much less frequently than when you raise uric acid levels)
Keith Taylor (GoutPal Admin)Participantone more thing, probencid does not make me feel tired and crappy like the allipourinol did. I took it for 3 months and saw more improvement on probencid in 3 weeks.
Keith Taylor (GoutPal Admin)ParticipantIt was a combination of diet, hydration and the meds. Cut out red meats, beer/wine and booze, Multi-vitamins, teas and coffee and soda's; also a few vegetables. Multi-vitamins gout me up worse than beer. Drink plenty of water with lemon juice.
I was justed amazed I was shooting for the 3.00000000000 and came so close it was eary. Now, I'm on antibiotics so I'm back on the gout wagon.
Keith Taylor (GoutPal Admin)Participantodo said:
Just got my lab results over the phone and was told “slightly high at 4.7″ by which I assume she meant .47mmol/L (7.9 mg/dL)
Going to have to fess up here and admit that one of the tests (the better drop of blood) I did when I got home was also 7.9.
Oh dear, in terms of the accuracy of the meter, I can see a relatively large portion of lo-purine humble pie heading in my direction ( but only as long as the sampling procedure is accurate).
From the Morris Dictionary of Word and Phrase Origins:
“humble pie. Here we have a play upon words which dates back to the time of William the Conqueror. First, the pie referred to in 'eating humble pie' was really umble pie, made from the umbles – heart, liver and gizzard – of a deer. It was made to be eaten by servants and huntsmen, while the lord of the manor and his guests dined on venison. Thus a person who had to eat umble pie was in a position of inferiority — one who had to humble himself before his betters. The pun resulting from umble and humble is even more precise when you recall that in several British dialects – notably Cockney – the h in humble would be silent. Actually, the two words come from quite different roots, humble from the Latin 'humilis'(low or slight), and 'umbie' from the Latin 'lumulus' (loin).”
Not much chance of lo-purine then, with heart liver and gizzard!
You are right – the home uric acid test is absolutely down to accurate sampling procedure, which does take some practice.
'Umbly Yours
GoutPal
Keith Taylor (GoutPal Admin)ParticipantDiet is just a tool that might help you manage gout if you meet the right criteria.
The important thing first is to assess your current situation. At a minimum we need to consider your height, weight, and exact uric acid level (the number – excess really does not mean anything)
With that information, we can develop a plan to lower uric acid. Diet may well be part of that, but without the basic information as a foundation for your plan, the gout diet would be meaningless.
-
AuthorPosts