Forum Replies Created
-
Posts
-
nokka said:
I recently needed to renew my prescription and dropped by the GP to get a new one. No need to see the Doctor. While there I asked the reception staff how often I should have a blood test – after consulting with colleagues, I was told every 6 months.
Nice to hear from you again, nokka. That is Gout Freedom Gold. You might get to a state where you can have an allopurinol (or other urate lowering treatment) “holiday”, after a few years.
You will never be able to stop uric acid blood tests every 6 months (12 months max). Kidney function and liver function should be included.
It's great to see some “real life” figures, cjeezy, and great to see that, generally speaking, you are progressing well.
It is difficult to draw conclusions from your data, though time will tell if this is a repeating problem, or a one-off blip.
?
The most significant aspect is that allopurinol works extremely well (in most cases 100%) on uric acid from purines that we eat, but less well on the uric acid that our body generates. The most significant factors, other than eating, that affect uric acid levels are:
– Fasting
– Exercise
– Illness / Trauma
Added to that list, which is especially relevant to those gout patients on urate lowering treatments, is the “surge” effect of dissolving uric acid crystals. That factor is particularly difficult to predict, as it varies tremendously according to how well hidden the crystals are, and if they are in clusters, or fairly evenly spread.
I'm guessing you would remember any recent illness or trauma, and there isn't much you can do to avoid them. The best I can suggest is to stay hydrated when exercising, avoid over-exertion, and avoid fasting. On the subject of fasting, there is a long-held myth that fasting is important prior to blood tests, but I believe this is now largely discounted. For uric acid testing, there may be some complications with testing immediately after purine-rich meals, but this will be minimized with allopurinol.
I'd love to say it was Zip2play's wise words that convinced me on daily allopurinol, but it actually took a large bang on the head!
I wouldn't risk it when there are much more proven treatments available:
Abstract (nociceptive means “causing pain”)
?
Prog Neurobiol. 2010 Oct;92(2):151-83. Epub 2010 Jun 15.The nociceptive and anti-nociceptive effects of bee venom injection and therapy: a double-edged sword.
Chen J, Lariviere WR.Source
Institute
for Biomedical Sciences of Pain and Institute for Functional Brain
Disorders, Tangdu Hospital, The Fourth Military Medical University, 1
Xinsi Road, Baqiao District, Xi'an 710038, PR China.
Abstract
Bee venom injection as a therapy, like many other complementary and alternative medicine approaches, has been used for thousands of years to attempt to alleviate a range of diseases including arthritis. More recently, additional theraupeutic goals have been added to the list of diseases making this a critical time to evaluate the evidence for the beneficial and adverse effects of bee venom injection. Although reports of pain reduction (analgesic and antinociceptive) and anti-inflammatory effects of bee venom injection are accumulating in the literature, it is common knowledge that bee venom stings are painful and produce inflammation. In addition, a significant number of studies have been performed in the past decade highlighting that injection of bee venom and components of bee venom produce significant signs of pain or nociception, inflammation and many effects at multiple levels of immediate, acute and prolonged pain processes. This report reviews the extensive new data regarding the deleterious effects of bee venom injection in people and animals, our current understanding of the responsible underlying mechanisms and critical venom components, and provides a critical evaluation of reports of the beneficial effects of bee venom injection in people and animals and the proposed underlying mechanisms. Although further studies are required to make firm conclusions, therapeutic bee venom injection may be beneficial for some patients, but may also be harmful. This report highlights key patterns of results, critical shortcomings, and essential areas requiring further study.
?
To my knowledge, there are no specific studies on bee venom therapy in gout patients, though one study in mice reports significant increases in uric acid.
I mentioned sharing private information only as an afterthought really, but I guess my point is that you should not have to ? your doctor should be able to advise you properly.
?
It's bad news when that relationship breaks down. Generally, I am very keen to bolster the patient-doctor relationship by helping the patient know what questions to ask, and to help understand the answers. Maybe the time is right to put your feelings in writing to your doctor, in the hope that he will understand that you are not trying to tell him how to do his job, but you do have real concerns about your treatment? Other contributors here might advise you that you SHOULD be telling your doctor how to treat you, but that's not really any concern of mine.
?
What does concern me, is that you get the right treatment for your situation. Most doctors bypass the 24-hour urine analysis test because treatments like allopurinol and febuxostat are equally effective for under-excretors, and over-producers. Any person who might have problems with these drugs deserves the investigation to see if they are an under-excretor, so that additional treatments can be considered. To me, it is that simple. Personally, if I was in a similar situation, and I could not get an adequate response to a request for a simple, well-established test, then I would have to think seriously about my options to take the matter further (either legally, or professionally).
Hi Donna4878,
I moved your message here as the other topic was about tophi. Maybe it was my fault for introducing iron into that discussion, buit this topic really does deserve its own discussion.
?
Excess iron has definitely been shown to cause gout, though it is not well known in the medical profession. It may cause other inflammatory problems, but the key word is EXCESS.
Excess of anything is rarely good. Some calories = good, excess calories = obesity. Some uric acid = good, excess uric acid = gout. Etc, etc.
?
So with supplements, you should only add something that you know to be short. With some substances, it may not matter, if the body excretes excess. With iron, and many other things, it does matter, as our bodies are programed to store the excess, but this can lead to problems.
?
Iron supplementation is usually good for kids and pre-menopausal women, but even then, it should only be as guided by your doctor's iron blood tests. For men and post-menopausal women, unless they have an iron deficiency, iron supplementation is dangerous.
?
I introduced this subject (in the old thread) by referring to the food industry. Specifically, as I understand it, US flour is routinely supplemented with iron. In the UK, almost all breakfast cereals are routinely supplemented with iron. The stupid b*st*rds are killing us!
dandydon said:
Hi Keith! Glad to make your acquaintance. WHen you speak of 24 hour urine analysis, are you referring to a simple test I can perform at home? Or the doctor's office? Or a lab?
You collect the pee at home in a suitably sterile container (which I guess your doc provides) and your doc sends this to the lab. Total volume of uric acid is measured, and this gives your rate for excretion. It can only be done prior to uric acid lowering treatment, or the results will be falsely low.
?
In your situation re rheumatologist, I can try supply your doctor with links to relevant research articles, but there is not much specifically on gout and Crohns. As I see it, if you can find more treatment options, you are more likely to find something that works for you, hence my first step advice on the pee test. Once you have those results, if uric acid excretion rate is low, I can suggest a list of uricosurics that your doc can investigate for Crohns suitability.
?
The other issue where a rheumy might help is in checking if any aspect of your Crohns treatment might be causing high uric acid. Myself and others here are happy to look into this, so long as you do not mind the inherent invasion of your privacy as you share your medical history in this public place.
I think the first step should be a 24 hour urine analysis. This helps assess if you are an under-excretor or over-producer of uric acid. If it reveals under-excretion. this gives you more options, as uricosuric drugs can be added to the usual allopurinol & febuxostat (Uloric / Adenuric) choices.
If uricosurics do become an option, plenty of water is a must, and alkalizing with baking soda or similar might be required to prevent kidney stones, which seem to be associated with Crohn's.
This type of juggling with gout and additional health conditions is usually best dealt with by a rheumatologist, except where your general practice doctor has the time and inclination to investigate the specifics of drug interactions or other treatment complications.
esabogal said:
1. Normally is not a good idea to start on Allopurinol during an attack (Zyloric), this may worsten or take more time to resolve.
This is true, but as Rizwan has already started, then it would be wrong to stop.
?
Rizwan, it is now time for you to get retested to see if your uric aid level has dropped enough. You might need to get your dose increased to achieve a level of 3 to 4 mg/dL.
Whilst you are getting tested, please point out to your doc, that 7 is not normal – it's just a lab average for all tests, which includes gout sufferers. Maximum is 6.5, but best to stay at 6 to give a safety margin. I suggest aiming for 3 to 4 for a few months, as this will get rid of old uric acid deposits faster.
See Allopurinol pages for more.
No, your rheumatologist is correct.
You may well have some uric acid deposits in various parts of your body, but if they start to melt, they will dissolve too quickly to be detected in synovial (joint) fluid when allopurinol is maintaining blood uric acid at 4mg/sL..
All I can add to esabogal's excellent points, is beware of poor testing procedures. In all the studies I've seen, rheumatologists come way ahead in the competence stakes for joint aspiration. Even then, there have been some significant failings if fluid is not analyzed under appropriate microscope almost immediately. Crystals will dissolve after being drawn, so always make sure fluid will be tested immediately when you consent to the test.
dcdude said:
I don't see a downside in making dietary changes. Three cheeseburgers is definitely not good for gout.?
Sorry, I didn't mean to imply that diet is not an issue.
I just feel very strongly that there is a real risk that this is something other than gout, and needs to be investigated properly.
A proper gout management plan, including diet control, is not to be taken lightly, and certainly not worth the effort (or the worry) if gout is not the problem.
First, you need to lose the idea that gout is a food disease. This is hard when thousands of Internet pages, and a large proportion of doctors, claim otherwise, but you must ignore them.
Gout is an imbalance of uric acid metabolism. In many people, food can act as a bad influence on gout, but it is rarely the root cause. It usually starts with genetic defects that affect the way we process uric acid – we either produce too much, excrete too little, or a combination of the two. Often, this can be compounded by trauma, some medications for other conditions, and environmental factors such as extreme cold.
Competent doctors will first analyze blood levels of uric acid, possibly measure excretion rates using a 24 hour urine test, and confirm or disprove the existence of uric acid crystals by drawing fluid from a joint, and testing it immediately. Uric acid crystals cause gout, not food, though if gout is confirmed, a good analysis of diet might reveal some areas for improvement (this needs proper analysis of existing diet). These competent doctors are usually rheumatologists, but some general practice doctors are good. The examination needs to be meticulous, especially in anyone under 40, as there are conditions that mimic some aspects of gout, but are totally different, and need different treatments.
It is certainly possible to get gout in your twenties, or even your teens, but it is almost always due to genetics or kidney problems. In your case,your height and weight indicate that you are at very low risk of gout from diet. Even in the unlikely event that diet is an issue, it is absolutely pointless restricting, what appears from your question to be, a good diet. Do not even think about diet changes until you have a proper number for your uric acid test results. Come back here with that number (not an opinion such as low/normal/high – we need an exact mumber which should include the scale (in the USA, this is normally mg/dL). If possible, find out if your records have earlier iric acid test results, and get dates and numbers.
In the interests of accuracy, there are 6 reviews from people recommending these herbs & 1 person recommending a different product that her husband takes.
I've no doubt that some natural products will lower uric acid, and others will reduce inflammation and lower pain. I do have serious doubts about applying natural products in totally the wrong way.
The approach to gout management through natural remedies is no different to the approach through pharmaceuticals. Failure to monitor and manage uric acid levels can lead to very serious health problems, that are easily masked for a few years by inappropriate treatments. I accept that some doctors play this form of Russian Roulette with their patients health, but I expect visitors here who are taking responsibility for their own health to have a little more self respect. Only 2 of the 6 reviewers bothers to mention the all-important uric acid, but neither shares their blood test readings. Suspiciously, both refer to the product as an effective uric acid neutralizer, without explaining this unusual term. Is this the placebo effect of persuasive marketing and product packaging, or is there a more sinister reason why 2 people would use similar, unfamiliar terminology. I'm an avid fan of Amazon, and regularly use product reviews to influence my buying decisions. However, I am aware how easy it is for producers and distributors to plant fake reviews, and even easier to generate fake 'high helpful review' rankings. In my case, the reviews here do not persuade me, but other people may think differently.
Anyway, it's only $25 for a 60 day supply, so perhaps someone with their own uric acid meter would care to give us a meaningful review?
The only stupid questions are the ones you do not ask. But do you not think you should be asking your doctor for some clarification?
?
If it is not gout, some diseases that have symptoms that mimic gout are pretty serious. Septic arthritis springs to mind, where joint inflammation is caused by infection that can lead to serious health problems if left untreated.
?
If it is gout, untreated high uric acid usually leads to untreatable joint damage.
dcdude said:
I'm confused as to why MyFootHurst's link to the Choi study was replaced with a link back to GP. If the article was “poor quality,” why is the study still referenced on the GP page?
I found the original article to be very helpful. If there is bad information in it, I'm all ears…
Nothing too much wrong with the study, but plenty wrong with the site describing it (see external sites for clarification). Every hour I spend checking stuff like that, is an hour less available for improving gout resources.
Please remember that the primary purpose of GoutPal Interactive is to discuss, comment on, and find ways to? improve the resources at GoutPal.com so that they can be more accessible for gout sufferers everywhere. This is not acheived by quoting poor quality Internet resources.
If you cannot find resources on GoutPal.com, or they are not easy to understand, please raise the issues here, by private message, or by my Contact Form.
?
The easiest way to find relevant GoutPal resources is to use the search box at the top of each forum page, which is repeated at the foot of the right-hand sidebar.
hansinnm said:
I miss the good, ole days when I just “copy” and “paste” a phrase, page, or picture from one file/page to another.We used to be able to do that over a year ago on your forum, till one day we could no longer and never since.
And at least once a week, Microsoft Internet Explorer users (aka the majority) would complain that badly pasted articles were blocking a thread completely.
It looks like the baby has a memory that the old farts have lost (perhaps cos the baby was always left to clean up the shit)
Gary L said:
Was wondering if anyone had some info on glucosamine supplements in regard to helping to heal the damage done by years of gout.
The permanent damage is classed as osteoarthritis. Though there are doubters (and with so much money at stake, one would expect there to be), I'm afraid that there is Little Hope For Gout When It?s Gone Too Far.
Even with a bang on the head, I can't find a way to misunderstand my notes about ways to share your photographs or other information about uric acid and gout
dcdude said:
Hi, Keith
Nice to finally “meet” you electronically. Are you out of the hospital yet?
Yes, out of hospital, with a knee brace for 5 weeks – much better than a plaster cast. The head and back fractures will take care of themselves. I'm considering selling lucky handshakes
?
I've been on a few forums in the last several years, and I must say that I've never seen a single individual who has made so many valuable contributions to one topic or forum. It's simply amazing. Thank you so much in advance for all of your tireless efforts!
Thank you. I started looking for gout info around 9 or 10 years ago, and found it lacking in every respect. I knew I could do better. It is a topic that ignites my passion, so whilst other people are buggering about for a few bucks, I'm seriously trying to establish some core principles that all gout sufferers and their carers can use to help manage their gout. Exposing the widespread myths (that affect the medical profession as well as us laymen) is part of the task. I am not religious, so I put no spiritual meaning on my recent lucky escape from death. However, survival has given me the keenest sense of purpose – I simply must achieve what I set out to do, and make my gout resources the best they can ever be.
?
As you say, what's even more suprising is how little the “legitimate” medical community has published online. I wonder if it's equally sparse for “major” diseases like cancer or diabetes, etc.? Either way, the conspiracy theorist in me expects that there has to be a certain amount of ego involved for doctors, the AMA and the insurance and pharma industries to leave the institutions status quo (read: profitable) and prevent patients from self-mediacating and other sorts of meddling.
That's a pretty wide debate, but a part of it is very interesting to me. Takeda, who are marketing febuxostat as Uloric in the USA, are spending millions online promoting gout awareness. I presume this is supported offline with practitioner information packs. My mission is to tap into that awareness, so that gout sufferers and their advisers can distinguish the choices available for treatment, and hopefully realize that febuxostat is a useful, but secondary, option where other treatments have failed. Part of that is to show that most failure is not down to problems with allopurinol, but the way it is administered. And if the same level of ignorance is applied to Uloric management as it has been to allopurinol management, then I can soon see Uloric being branded as an expensive waste of time (probably when the next new cure becomes available, he added cynically).
?
PS: How are your preparations going for Prince William's big day? The hearts of the whole country must be aflutter! 😉
Not for me. I'd prefer to ignore this sort of tosh completely, but a part of me is angry that so much money can be spent on this trivia when so many people are without funds, and without hope.
Note to those who suspect gout, but dismiss it because they do not have symptoms so severe.
?
What makes gout so “uniquely horrible” is the role of uric acid. Harking back to the second image I posted, we can see that there are many factors that can influence the amount of uric acid crystals that form in the body. Each crystal attracts the attention of your immune system. Once detected by white blood cells, each crystal is attacked. Two things happen here:
1 – the white blood cell undergoes changes that allow it to engulf the crystal, which is the prime cause of inflammation.
2 – the cell signals for reinforcements, which magnifies the effects, and at least one of the signalling mechanisms is enhanced by uric acid.
Thus you have a rapidly expanding inflammation area that creates a vicious cycle of pain encouraging more pain, until all crystals are surrounded by white blood cells.
?
This happens frequently in the big toe because uric acid solubility is affected by temperature, but if your lifestyle gives you warm toes, with another joint at lower temperatures (in my case, my ankle, probably due to long distance driving), then that joint may well be affected first. In many cases, the number of uric acid crystals is not high enough to create the vicious cycle, but may result in much lower levels of inflammation, often barely noticeable. So you might still have gout without an episode of excruciating pain, but if you wait long enough, without treating the high uric acid levels, your turn will come.
dcdude said:
I hope I'm not out of line here, but as some of you may have read, I'm a new member here, and I've been doing frenzied research trying to learn as much as I can while I try to treat my current flare up with as few drugs as possible. In the process of this research, I've come across TONS of information from various websites. I'm convinced that GoutPal interactive is certainly the best forum for us, but it seems like goutonline dot net might be the second best.
You're certainly not out of line in my opinion, but I would like the opportunity to re-emphasize the purpose of my mission here.
Though this forum is designed to provide a safe haven for gout sufferers seeking unbiased advice on various aspects of gouty arthritis, that is really secondary to my main aim of providing a comprehensive, accessible resource at GoutPal.com.
?
I want GoutPal.com to be easy to use at every level of gout care, so that total newbies can easily see what they need to do to best manage their gout, but also to back this up with good evidence so that medical professionals can understand why some approaches are better than others. I am much more in favor of providing facts and figures that can help doctors and patients understand each other, and improve their relationship, than providing exact step-by-step procedures for managing gout.
?
Gout varies considerably between different individuals. Though the basics of uric acid metabolism are true for everyone, the effects can differ greatly at all stages of gout management. Gout sufferers deserve a range of sources of information and advice so they can choose that which suits them best. I would love to be able to present the most complete gout support service on the Internet, but I realize I cannot be all things to all men.
Information sites continue to proliferate, and I'm happy to work with any gout information provider who can focus on specific niches, and therefore give the best support for that niche. For example, Nate has developed his active person blog, and he is much more capable than me of providing help to people who lead very active lifestyles (my own activities being completely sedentary, apart from the occasional headlong dive onto concrete).
Forum sites depend entirely on the contributions from members – and that means good questions, as well as good answers. But it also means that people have to be like-minded, or willing to listen to those with different views. I've been lucky to have some wonderful contributors to this forum, and so if it truly is the best on the Internet (which is what I want it to be), then that is down to the wonderful people who contribute here. Gout forums are good for people who want to discuss gout, but this is not the perfect platform for presenting comprehensive information that can be used for reference and research – in my opinion that type of resource is best served by a well structured knowledge-base, such as the one which I continue to develop at GoutPal.com.
?
So, to summarize, please feel free to discuss any gout resource available, but please also take time to advise me where good information is missing from GoutPal.com, or where that site is not presenting stuff in the best way. I've been spared from death to take that gout resource to the next level of ultimate help for gout sufferers and their carers. Some constructive criticism from every visitor here will help me fine-tune that resource and make it better for many more people.
Hello all! My dad’s now got a lot more movement in his arms so we’ve set him up with the hospital Internet but it’s a little outdated and is not allowing him to post on the forum. Therefore, he’s telling his story via the homepage so please click the link below to read all about his accident and he will continue to update it
https://gout-pal.com/goutpal-on-the-mend/2011/04/Keith’s daughter here again…Keith says:
“I got some good news today, I’ll walk again but don’t know when. Friends and family will keep signing in for me to keep an eye on the site. Thanks for your messages.”Though MRI comes nowhere near DECT for diagnostic purposes, it will show uric acid crystal deposits. Unlike DECT, it is hard to determine what the deposits are with MRI, and it is almost impossible to detect if they have eaten into bone (unless there is clear bone erosion, but even normal X-ray will show that).
?
However, they can be used to show that urate lowering treatment is working. So, you can take a baseline MRI scan, take a few months allopurinol or febuxostat or other gout medications to lower uric acid, then repeat the MRI to assess improvement. It is absolutely vital during the treatment to have monthly checks to ensure uric acid stays below 6mg/dL.
Allopurinol won't make a difference as it works only on uric acid. Diet won't make a difference, as pseudogout has very little todo with diet – the calcium deposits are not a result of too much calcium, but (often) shortage or excess of other minerals that cause calcium to be deposited.
?
You need to find a rheumatologist who has experience of pseudogout. Magnesium supplements have been known to help, but this varies from case to case, depending on the underlying cause. One fairly common cause is thyroid problems, but some rheumatologists might not check for this, which is why I say find an experienced one.
Ah, yes – good old Gillray. Interestingly, it's a foot only picture, but you just know the guy is screaming.
I've just found the explanations that should accompany those images.
For the first image of a damaged joint:
Low-level inflammation persists during the remissions of acute flares. Cytokines, chemokines, proteases, and oxidants involved in acute inflammation contribute to chronic inflammation leading to chronic synovitis, cartilage loss, and bone erosion. Monosodium urate (MSU) crystals are able to activate chondrocytes to release interleukin-1, inducible nitric oxide synthetase, and matrix metalloproteinases, leading to cartilage destruction. Similarly, MSU crystal activation of osteoblasts, release of cytokines by activated osteoblast, and decreased anabolic function contribute to the juxta-articular bone damage seen in chronic MSU inflammation. IL interleukin; iNOs inducible nitrous oxide synthase; MMP-9 matrix metalloproteinase-9; PGE2 prostaglandin E2.
For the second image of factors affecting the solubility of uric acid in the joint:
Urate crystallizes as a monosodium salt in oversaturated tissue fluids. Its crystallization depends on the concentrations of both urate and cation levels. Several other factors contribute to the decreased solubility of sodium urate and crystallization. Alteration in the extracellular matrix leading to an increase in nonaggregated proteoglycans, chondroitin sulfate, insoluble collagen fibrils, and other molecules in the affected joint may serve as nucleating agents. Furthermore, monosodium urate (MSU) crystals can undergo spontaneous dissolution depending on their physiochemical environments. Chronic cumulative urate crystal formation in tissue fluids leads to MSU crystal deposition (tophus) in the synovium and cell surface layer of cartilage. Synovial tophi are usually walled off, but changes in the size and packing of the crystal from microtrauma or from changes in uric acid levels may loosen them from the organic matrix. This activity leads to ?crystal shedding? and facilitates crystal interaction with synovial cell lining and residential inflammatory cells, leading to an acute gouty flare.
At last, all becomes clear
Well said, Bob!
?
I often go on far too much about “the best way to do this” or “the most likely result of doing that” forgetting that the first objective is to find gout freedom your own way.
To feel normal again is all most of us really want, and the way to find that will always vary between different people.
I understand the lack of time to spend in forums, but if you ever drop back here, and notice someone in similar circumstances to you, I hope you'll give them a few words of encouragement.
Thank you for bringing some positive rays of sunshine to brighten up the gout forum.
