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Eric, I think you need to read all this again. Best read it aloud to an impartial friend, but if not, just read it anyway, and think about what is being said.
eric ryan said:
Why is everyone jumping all over floridatrees? They weren?t being malicious, just conveying their feelings.
I do not think anyone has accused floridatrees of being malicious. I accused them of being disrespectful in the nicest way I could, because it is important to me that people read the guidelines, and not come here wasting time.
I have had some issue with navigation, just never expressed it. It doesn?t mean I am not thankful for this site. Some of us aren?t as savvy nor technical when it comes to these things.
?But if you do not share the issues, how can I make things better? I do not expect anyone to require anything other than a fair-minded attitude to contribute here. You should not need any special technical skills other than the usual browser to navigate my websites, just as you would navigate around any website. It is unfair to me to claim in public that there are problems using my websites without telling me what they are. I do not expect a technical analysis if there is a problem, but a short note in public or private would be nice – something along the lines of “the information on page [insert link here] was good, but I could not … [insert whatever issue you have]”
Aren?t we all here with a ?common cause? A very painful and frustrating health issue?
Yes we are, and that includes being clear about your problems. Though this topic is about technical issues, the same principals apply to health issues. If you do not make it clear what the issue is, and how it applies to you, preferably with some history and expectations, then you create more frustration. As I mentioned, I usually ignore people who make no effort to play a contributing role, but as this forum gets replaced by another, I'd like to encourage some better habits. Good questions make a real contribution to the lives of gout sufferers in similar situations who cannot or dare not speak out. Everyone should strive to make their questions as answerable as they can. Opinions should be backed by facts, or at least clearly marked as personal opinions.
Shouldn?t we be trying to help each other instead of getting upset with someone for being honest with the way they are feeling. I read nothing mean spirited at all in their post.
?In my opinion, it is mean spirited to use this forum to complain without details. It wastes time for all readers, and it puts me in a very bad position. How would you feel if a stranger came up to you in the street and said you were the worst he'd ever seen? Would you want to know why?
There are enough websites out there with people just waiting to pounce on others, I was hoping this one could be different.
Eric, this site IS very different. It's primary purpose is not even to offer individual help, but when that help comes, it is the best anywhere. There is not one site, there are two. This is a support site for gout sufferers, but it is mainly a support site for GoutPal.com. That website contains all the information that any gout sufferer needs to fix their gout. It is free. It is updated regularly. However, it is not perfect. Just like this support site, it is developing into a much better, easier to navigate, resource. I need people to help me make that resource even better. I do not need people wasting my time, and that of others, by posting messages that cannot be answered and make no contribution.
People are not here waiting to pounce on others, and if anyone reports such behavior to me, I will remove them.
Both limpy and hansinnm have made positive contributions that seek to improve this topic. However, I still see little coming out of it that adds any real value, and your latest message does not change this.
Has noone any real issues to report properly, or nothing positive to add about how to report problems?
Thank you for that contribution, drmarclevine.
You prompted me to take a quick look at studies on uric acid and eczema. Most studies use the term psoriasis, which appears to be commonly confused with eczema. The exact differences between psoriasis and eczema probably do not matter much in this context, as the studies are inconclusive. Most agree with your rheumatologists view that gout and skin problems are often co-existent. At least one study finds no evidence of association.
Nothing I have seen so far offers any suggestions of how gout may affect, or be affected by, skin conditions.
The logical approach is to deal with the gout by lowering uric acid to safe levels, then review the skin problem after several months. If eczema/psoriasis disappears along with the uric acid deposits, then you have your answer. If not, then you have a clear mandate to investigate your skin problems further, and seek other remedies. It is vital, for this approach to work, to keep uric acid to 5mg/dL (0.30mmol/L).Getting it lower than that for a few months will speed the process of dissolving old crystals. Failure to sustain this safe level can make gout worse, so if it is linked to the skin problem, it will likely make that worse too.
There is quite a lot of information scattered around the forums here and on the main gout site – GoutPal.com. To find it, use the search box at the top of the screen – something like itching OR eczema OR psoriasis will yield a wide scattering of relevant information. If you want me to summarize it all more effectively, follow the guidelines for improving this gout support service (Gout Forums For All).
Bhart said:
Going on to 3 months and all is well.? Had some follow up blood tests done and I've had a reduction?in uric acid levels of almost 50%, to what my GP feels is a normal level.?
Be Careful! Normal for people with no gout symptoms is very different from safe for gouties. Once you have had a gout attack, any level above 5mg/dL (0.30mmol/L) is dangerous. Be prepared for argument, but don't accept anything higher – it isn't your GP who feels the consequences.
I do still have some knobbly toes and a bunion that weren't there 3 years ago.?Not sure if they are naturally occurring or if they are as a result of gout.? If they are?now present because of my stubbornness about taking more meds I'll make this a warning to any that are putting off a major treatment like Allopurinol or Febuxostat; don't wait until the gout causes secondary troubles.? A lifetime commitment to these drugs is less of a problem than a lifelong commitment to these drugs PLUS dealing with arthritis!? Then there's?my added problem of a few years?of relative inactivity because of the gout and now also having to loose weight. Don't put off the inevitable.?
Wise, wise words. I might make people type that bold text in before they get access here.
Now, if I could just slow down my life a bit to have some free time for exercising and relaxation, I'll be set.
I find falling off buildings helps reassess life's priorities
(or means you don't have to
)Kim Glasgow said:
I have just had my first experience with a gouty toe about 1.5 months ago. The flare up lasted for about one week. I was suprised that I have gout since I am fairly fit and not heavy…. But I think that my dieting has caused the gout. I am concerned that people say that diet will not effect the gout. I have bought a meter and have been testing my levels. Initially I had a reading of 10.8 and then after managing my diet and not drinking any wine, I have brought my readings down to 4.8 – 6.4 mg/dl.?
…
So far I am eating a more vegetarian diet, using the gout haters cook books, drinking apple cider vinegar with the mother with a bit of baking soda, and not drinking any beer or wine. My family is furious with me for taking a dietary approach to this… They feel I am being far too picky and fussing too much about a little old gout attack. I admit I want to manage this and not let it become a horribly debiliating aspect of my life. ?Any suggestions?
In my opinion diet does not cause gout – excess uric acid does. OK, diet can affect uric acid, but my distinction is important because it tells you exactly what you must do if you want a successful dietary approach to managing gout.
You must measure uric acid frequently, and make dietary changes that lower uric acid. I will not dwell on this here, as we are mainly discussing itching and eczema, but you are taking the perfect approach. If you can lower your target to never go above 5mg/dL, you will gain gout freedom. Just be aware that there is more to uric acid control than purines, so please feel free to start other discussions about iron, calories, exercise, etc in the gout diet forum.
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As for the itchiness and eczema, it is a difficult one to call.
I have experienced these symptoms, but not at any interval or frequency that I can relate to gout attacks. Analyzing events with respect to uric acid levels would be useful, but hard to make it conclusive with a sample size of one. It may be significant that my itchy experiences were when I was trying to control uric acid through dietary means – maybe some food changes triggered allergic reactions?
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It seems logical to me that the physical effects of an acute gout attack – soreness and inflammation – might trigger eczema, but I would expect this to be localized around the affected joints. If it is related to tophi forming near the surface of the skin, then I expect this to go away if you maintain uric acid at 5mg/dL.
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The autoimmune angle introduced by Andrew is an interesting consideration. As the pain of acute gout flares is caused by an immune response to uric acid crystals, then gout must affect other autoimmune disorders. How it affects them, and to what extent, is unknown (at least to me at this time). However if anyone denies the connection, I'd love to read their explanation of why the disorders are not linked. If they think that gout pain is caused by sharp crystals irritating joints, then stamp on their heads
.If the itching and eczema is gout-related through the immune reaction to uric acid crystals, then you need to be aware of the two entirely different phases that trigger the immune reaction. I call one the bad phase, where uric acid is high, and crystals start to form – usually in one or two isolated locations. The other phase is the good phase, where uric acid is low and crystals start to dissolve – usually more widespread, throughout the body.
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By maintaining uric acid below 6mg/dL eventually, all old crystals will dissolve, and then the immune system will not be affected by these foreign invaders. I, and any other self-respecting gout adviser, set the upper limit at 5mg/dL to give a safety measure for natural variations. This is particularly important in the early stages as blood uric acid levels can rise naturally if large volumes of deposits start dissolving at the same time. It also gives a safety margin for normal variations through the day.
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As far as seeking professional medical advice is concerned, this depends entirely on you. If the symptoms are too severe or last too long for you to cope with, then you must see your doctor. This is particularly true if there is a sudden change in frequency or severity. They can be helpful in assessing allergic reactions, assessing risks, and testing other possible causes. Be prepared to spend some time teaching uric acid management techniques, but if that becomes necessary, make sure you charge for it.
@Limpy: I know there are faults, and if someone asks for specific help on a problem, making it clear what and where the problem is, I will move heaven and earth to fix the issue. Most of my rantings below refer to the original message. It is so bad that I should have just deleted it. However, I hate censorship, so I'm grateful that you are pushing this discussion in the right direction. Please be aware that I'm mainly addressing the issues raised by the original message, but I'm also trying to include the specific issues raised by you.
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@all: I expect new members to read the guidelines. I ask for it at the top of each forum page, and in my sig after each message. Ignore it at your peril, as the best anyone can expect for nonsensical or disrespectful posting is to be ignored. The worst is ridicule and humiliation.
My ridiculous comments to ridiculous messages often attract personal criticism. It is almost always by people who cannot accept that this forum is not a platform for outrageous views, greedy self-promotion, or time-wasting questions. I show the same lack of respect to others as they show me, but the ones who don't like it are usually the ones who do not understand respect.
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@Limpy: please note I am not accusing you of this, but I would like to address the additional points you have raised. I appreciate that you take this seriously – probably more seriously than the original contributor.John has not hit a nerve, though I am frustrated at not being able to help better, as I do not know specifically what is wrong, and I do not know what he expects, or anything about his background or gout issues. Members arrive here from many different directions, with many different abilities, many different experiences, and many different expectations. I simply cannot look at the site as a new member would. I totally rely on members clearly reporting issues.
As I become aware of problems, I fix them. Everyone should be aware that this forum is changing completely. That will fix many issues, but I do not know if the original message relates? to this forum, or even this website. Your references to “black and tan or green header and the other side with the pink and red” have left me even more confused.
This is not a criticism of you, Limpy, but I like to answer specific questions and also make my answers useful to other people who may have similar questions.
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@all: The starting question needs to be very specific and personal, so I can answer that directly, and also add my thoughts on similar issues that are commonly related.
The only thing that keeps me going is the knowledge that those of us who can be bothered to listen to sensible contributions, and respond appropriately, make real differences to gout sufferers lives. I know this to be true, so I cannot accept this to be the worst website in the world. Having said that, I am perfectly happy to discuss any and all weaknesses, but claiming the site is unusable and claiming the information is the best in the same message is absolute nonsense.
Perhaps the real problem is that some people are so shocked by the amount of good information, and so awed by the selfless support from great contributors, that they forget how to function as real human beings. I am not God. I am not all-knowing. I cannot read minds. I can only react to the words in the message, so make your meaning clear.
I recommend that all contributors read their messages aloud before posting them, and imagine they are conversing with someone who they respect. Try this now, with the post that started this topic. Apparently, I've provided amazing information, but I'm not allowed to know what it is. My information is the best source, but I'm not allowed to know what the comparison is with. I provide the worst layout of all websites, but I'm not allowed to know what is a good layout. The site is unnavigable, but I'm not allowed to know how it managed to provide such amazing information. The browser is suspect, but I'm not allowed to know which browser or operating system is being used. Need I go on?
“The absolute best, yet the absolute worst. Please help!” is not a question that can be answered. “Can you help me find relevant information on [insert your gout issue]?” is a good question, and needs to be followed by a summary of experiences and expectations, with links to specific pages where relevant.
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I love this project. It was my first choice when I decided to live my life as if I had won the lottery. I.e., I questioned how I would live my life if money was not an issue. Providing support for gout sufferers was high on my list. I decided I must ensure that GoutPal continues to improve, and I must find ways to be able to afford that, and the other things I see as priorities for my time.
I guess my passion can sometimes come across as a knee-jerk reaction to criticism, but that is not true. I yearn criticism, but it should be given respectfully, clearly, and precisely. Constructive criticism is even nicer, and I will be launching a reward scheme to encourage this fairly soon.
It would help enormously if contributors would take a little more responsibility for their own health issues. Do not blame doctors, governments, pharmaceutical companies, food industries, or my screen layouts for your health problems. Learn to ask the right questions and take control of your own gout.
I've just read it again.
floridatrees said:
?
found Goutpal and was amazed by its content
the absolute best source of information I have ever found on gout.
Once again, the information I'm reading is the absolute best information available ANYWHERE that I have seen.? I just cant navigate the website.
I can tell the information is there, but I cant use it.-John.
I've found something brilliant but I can't find it ???!!!!
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I need another vacation.
This is the world's most user-driven website.
I'm lucky to have some of the absolute best contributors in the world. But I also have some of the worst.
ja said:
? His uric acid is not too high ?
I bet you $10 it is too high. Anything over 5mg/dL (0.30 mmol/L) is too high. This is a medical fact determined by professional rheumatologists. Unfortunately, most uric acid test labs do not recognize this important cut-off point.
?Please keep us updated with your husband's progress on this new treatment, but please also tell us exactly what his uric acid level is.
limpy said:
Sorry Keith,?I didn't mean to cause any problems for you.
Limpy, you didn't cause me any problems.
It is other visitors I care about. Please think of them.
Actually, I know that you do think of others, because your contributions here tell me that you do. This is really just a heads up to all visitors to be extremely careful (to the point of suspicion) about what you read on the Internet. There is a massive body of people who think the Internet exists only to serve themselves.
It is fantastic to have the ability and the friends to discuss things like this in public. Just be aware that the fools are desperate for links to their schemes, so don't give it to them.
Oh, and just to let off a bit of steam, please can everyone be careful about posting links.
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I am happy to provide publicity for good quality resources that help gout sufferers, but it is not fair on anyone to post links to websites that you are not sure about.
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If you want me to research a company you are not sure about, please use my contact page (in the About Menu) to send me the link so that other readers are not conned (or worse).
Sorry Limpy, but I felt the need to remove the link.
There are widespread reports of malware from this website, and others owned by the same person. My own check was very strange – after loading one page, I could no longer access the site, but my computer is pretty well protected, so I'm assuming the attempts to load bad software failed and caused the site to block.
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Anyone who wants to chance it can copy the link into their browser.
hansinnm said:
?(I know, Keith laughed at my example that those barnacles don't dissolve like a spoon full of salt or sugar in warm water.)
I didn't laugh. I blew you a
. Might have made other people laugh though.My unscientific testing by feeling my lumps (sic), reveals slow progress. The pea is still a small pea. I do not know if tophi will just get smaller, or if they will dissolve completely. Stay tuned for future progress reports about my lumps.
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I'm encouraged by reports from rheumatologists:
HR SCHUMACHER – 2008: Perez-Ruiz and colleagues have shown that tophi can be dissolved by decreasing the serum urate level
Natalie Dubchak and Gerald F Falasca 2010: In persons with tophi, prophylaxis [an NSAID or colchicine] should be continued until all tophaceous deposits have been dissolved.
John Darmawan, MD, PhD, FACR – WHO Expert on Rheumatic Disease, Geneva, Switzerland & Semarang, Indonesia : What are the long-term outcomes of maintaining a serum urate level of < 5 mg% in Chronic Gout
with tophi? […] the number of small tophi are dissolved, the size of large tophi are reduced, and formation of new tophi are terminated.I'll leave the rest of the 1040 results for another day.
Thanks, polecat – I for one am doing very well, though I am concerned about your continuing ill health. My thoughts:
1. If uric acid crystals were found, you certainly have a gout-related condition. Because acute gout (i.e. the painful flare) is an immune system reaction, it is perfectly possible, and apparently quite frequent, for people to get uric acid crystal build up without acute gout flare. This extreme form of asymptomatic hyperuricemia? (high uric acid without gout symptoms) presents some serious issues – the buildup of crystals in the joints will erode ligaments, cartilage and bone leading to osteoarthritis, but physicians are loathe to treat uric acid where it is not causing acute pain. Your experience in May proves that you have gout.
2. For many years, I believed that getting uric acid to 6mg/dL (0.36mmol/L) was a good goal. However, I have gained knowledge about natural uric acid level fluctuations, effects of low temperature, and seen British recommendations to set the upper limit at 5mg/dL (0.30mmol/L). From this, I now see 5 as the upper limit. (I'm gradually changing recommendations on my websites to match this, but I am aware that there are still several instances of 6mg/dL limit)
3. One of my early findings was that uric acid crystals dissolve much quicker at lower levels. Personally, I have set my target at 2 to 3 mg/dL for at least six months to try and speed up the crystal dissolving phase. Despite this, I get a gout flare about once a week though I do find these only last a couple of days.
4. Gout does not preclude other arthritic conditions.
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Through experience, I like to believe that I have a good handle on how to treat gout. My personal view is that your gout treatment needs to be more aggressive. In my case, I need to clear out the uric acid accumulation to remove any confusion with effects from an accident in April. In your case, I feel the gout issue mightl be confusing diagnosis of a separate condition, or it might be that you are simply suffering effects of uric acid crystal partial dissolving. I simply do not have the medical expertise to suggest a strategy for other arthritic conditions, but I would personally recommend discussing, with your doctor, a lower target for uric acid for six months.
My recent experiences have led me to think more clearly about the processes of curing gout. I deliberately say curing gout in the hope that zip2play will join in with his views that gout cannot be cured. I usually refer to fixing gout, or gout freedom, as being the state where uric acid is under control, and gout flares no longer occur. We know that febuxostat and allopurinol are very effective at stopping uric acid forming from dietary sources. Allopurinol is regarded as being 50% effective at stopping uric acid from our own body tissues regenerating, and I assume febuxostat has similar properties. Only Krystexxa (pegloticase) has any effect on existing uric acid pool, converting it to harmless allantoin. I know that zip2play is very sceptical of dissolving tophi, as they are very well protected by the protein sheath of sacrificial white blood cells. I share his scepticism to an extent, but I believe that the majority of uric acid crystals will eventually dissolve as protein sheaths are breached. The exact dynamics are unknown, but I have concluded that most uric acid crystals will eventually dissolve, but this is not a steady progression. Suddenly, pockets of uric acid crystals will break free, and start dissolving in the generally low uric acid environment of an allopurinol or febuxostat dosed gout patient. When this happens, the dissolved uric acid in the blood rises, and it seems perfectly possible that the general level might rise a couple of points, giving a situation of? an acute immune response to dissolving and new uric acid crystals at the same time. That is really my long-winded way of saying aim as low as possible with your uric acid level, and consider alkalizing diet or probenecid to get rid of dissolving uric acid as quickly as you can.
I know I have focused purely on gout issues, and I know that I have a tendency towards gout tunnel vision. I do not want to suggest that other conditions should not be considered. However, my tunnel vision dictates that I have to suggest you get the gout dealt with properly before you lose too much sleep worrying about other possibilities.
This question about improving the flavor of black bean broth with black cherry juice has been moved.
See the Gout Treatment Forum Guidelines for more information about the forum changes.
My relationship with allopurinol is similar to zip2play's relationship with colchicine – why bother wasting time with a couple of pills when you can blast the beast with the max.
The crystals are coming out of my joints, and the visible tophi on my arms and knee are shrinking.
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After years of reading the horror stories about inadequate dosing and horrendous journeys similar to the story here I am absolutely convinced that this is a good move. I do not expect to stay on 900mg forever, but will keep it there until the lumps have gone, hopefully within 6 months. After that, a slow and steady dose reduction to keep uric acid at 5mg/dL (0.3mmol/L). Happy days.
Yes I have called my doctor and she refuses to call in a prescription for me. she wants me to come in first. I will call walmart and costco to find out what the deal is. thank you for your useful information. I don't know when but I am going to have to wait until I can afford to see the doctor
Limpy,?
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what do you mean $4 dollar drugs? do I just ask them directly like that? or is there a way to find out?
Yes Indomethacin definitely took most of the pain away. and what you and limpy say makes sense. I might still get other attacks just from breaking this one down. I can't afford to go to the doctor right now and I don't qualify for any medical help because I was making too much money at my job according to these people. but I will try to get a hold of these medicines some how. Now what do you guys recommend for attack prevention?
Thanks for responding. No I have never had fluid taken from my joint. My gout was diagnosed because the very first time I had it I went to the emergency clinic not knowing what it was and they took blood, sent it to my doctor and she told me my uric acid level was very high and I had gout. she prescribed some meds that never worked and to be honest I don't remember the name. ?The med I took yesterday is indometacine and it worked wonders for the first couple of hours but even though I have continued taking it, it hasn't done much else and it still hurts a little and it is still extremely swollen to my liking. I can't walk good still. It has been two weeks I lost my job because of it and now I don't think anyone wants to hire a gimpy guy hahaha. PLEASE HELP!!!
Question about countries moved to
Gout By CountryAs gout is largely a genetic disease, the criteria for an effective study would be gout incidence by race, rather than by country. As far as I am aware, there are no comprehensive analyses by country or by race,? but there are some that look at specific countries and at specific races.
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There are some statistics about gout deaths by country at nationmaster.com/graph/mor_gou-mortality-gout, but this is more likely to be an assessment of medical practices rather than incidence of gout.
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If anyone wants to investigate this further, please beware useless stats similar to cureresearch.com/g/gout/stats-country_printer.htm. All they have done is take an unverifiedd global gout incidence percentage and applied it to population estimates for various countries. What awaste of time and effort!
Hans, you saved my life – or at least my short vacation.
You now have special powers in the form of a little spanner next to the profile button on the line above the message. Edit or delete as you think fit. I'm sure you'll be kind to those who make genuine mistakes and ruthless with those who are trying to abuse us.
I am back at the weekend, but will be checking my emails daily.
Gotta go now before I start making declarations of undying love
Yes, it is true that multiple arthritic conditions can, and frequently do, affect the same joints.
The joint fluid analysis test is the only common way to be almost certain about what is causing inflammation. I say “almost” because it is not 100% certain. The common pitfalls are inexperienced testers, leaving fluid too long between extraction and analysis, and insufficient volume to perform adequate testing.
The only certain way is advanced scanning techniques ? search for DECT in the box at the top of the page to see more information and discussions about it. Unfortunately these test facilities are very rare (and my attempts to glean more information from Siemens about active locations have fallen on deaf ears ? or blind eyes)
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For all practical purposes, a commonsense approach is best. If six months on uric acid lowering meds, at sufficient dose to maintain uric acid below 5mg/dL, do not produce a significant improvement in symptoms, then investigate for something else.
[edit]
I just realized that six months of pain is ridiculous. Gout pain should go away in a week or less. If it does not, then investigate for something else, but the lower level of uric acid is important. 6.1 should be good enough, but it does not allow enough margin for natural fluctuations. 5 is the new standard, and I am slowly changing all my references to safe levels from 6 to 5.
zip2play said:
… average dose of 300 mg./day…more if you name begins with a K.
?…
Ha ha ha.
That deserves the return of the smileys
and you resisted the temptation to follow with the u, the n, and the t
zip2play said:
…
?If you are on allopurinol there is no need to worry about creating an alkaline urine because you are excreting LESS uric acid. It is those on uricosurics who excrete large amounts of uric acid for whom an alkaline urine will help prevent precipitation of urate kidney stones.
…
Good point!
I must remember that, and make some of my ramblings clearer.
@alyboy – Was your second post a mistake? Should I delete it?
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@hansinnm – Do you want moderator rights so you can correct my posts? (Thank you for clarification)?
@zip2play – Is it not worth a short period on 100mg just to rule out hypersensitivity? I know it is rare, but the consequences seem pretty dire to me. How would you handle the risk?Yes, alyboy, that is a good approach.
I find colchicine supported by an anti-inflammatory is the quickest answer, as colchicine slows the increase in inflammation but does not provide pain-relief. A week, or even two or three days, on such a combo should ensure that gout pain is gone, or very much reduced.
Once inflammation has subsided, you can stop the anti-inflammatory, but continue with colchicine for around two weeks. If you have a change in allopurinol dose, it is good to go back on one or two colchicine for one or two weeks which will reduce the chance and severity of more attacks. If you do get an attack, return to the colchicine plus anti-inflammatory to fix it.
Good luck with getting your uric acid down to 5mg/dL. I am down to 3mg/dL for a few months to speed up dissolving old crystals. I THINK it is working, but early days yet – I'll report back in a couple of months, when I'm hoping the tophi shrinking will be noticeable.
