[Keith Taylor]

I think that “funny feeling” is possibly early stages of “confirmation bias”.

But, what do I know? 🙂

[Keith Taylor]

Andrew: “It’d be cool if we could click a link here to order and they gave you some kickbacks for the sales”

Thanks for that. I’ve been going through a phase where I’ve concentrated on providing better information, rather than chasing the dollar. It won’t last! I still need to get Gout Diaries, and Structured Help going. And, I have to conclude what to do about GoutPal and Social Networks with Carolyn. I do have lots of links to Amazon.com (and amazon.co.uk and amazon.ca) and eBay and Walmart, etc. But, like lots of other things, the only way to find them is using the Search Box (top right). I will organize these better next year. In fact, I’ll have to. I’m funding my 2017 USA trip out of pension. 2018 and beyond depends on me getting my finger out, and returning my commission income to the heady days of 2011.

Patrick: “The most probable reason you don’t see a page for supplements on this site (feel free to correct me Keith) is because there really is no HARD evidence to conclude supplements such as Cherry Pills, Cherry Juice, or the like have anything more than a placebo effect on Gout sufferers”

Not a correction, Patrick. More of an explanation. There are good and bad gout resources. As per my reply to Andrew, I’m going to organize info on gout resources better. There are also doubtful resources. I can argue a good case for placebos, even though I’m not personally convinced. Ultimately, if a gout resource does no harm, I will not ban it from GoutPal. I might explain why I think it’s pointless for me (like home uric acid meters). But, if somebody is going to buy it, I’m grateful for any commission I can get. To summarize:

• Bad resources should not appear on GoutPal (tell me if they slip through).
• I will encourage good resources where they fit the right individual.
• I’ll take the cash where I can get it, if it’s non-exploitative. That’s my way of funding this service. It might not be perfect, but I prefer it to marketing false hope.

Jean: I’m not quoting anything, just apologizing to you. I’ve neglected responding to your posts. Thank you for your patience, and for your continuing support. I’ve put your other posts on my action list. I’ll respond soon.

[Keith Taylor]

Thank you for your patience, Irma. We now have Personal Gout Diary: Irma Reitz. It’s your area, to do what you want with. I’m here to help you use your diary, as well as answer gout questions.

The purpose of your gout diary is to help you organize facts, goals, and progress. You can add as much, or as little, as you like. You can organize it in whatever way suits you. If you are ever unsure what to do with your diary, please ask.

I’ve started with your Gout Facts. That’s a starting post that I’ll use for all new Gout Diaries. We can add to it, or change it however suits you.

Your important first decision is “do you want to edit it yourself?” If you do, just get on with it! (don’t forget – if you get stuck, you can always ask for help). And, also bear in mind, that I will use your facts as I’ve described in my next-to-last paragraph below.

If you want me to edit your Gout Facts Summary, just reply to that topic with any changes that you want to make. You will notice I’ve left some red question marks for facts that I don’t have answers to. You might find these are not important to you. That is to be expected, so just ask me to delete that item.

You might think you’ve already answered the question somewhere else. It’s true that I haven’t gone back through all your previous posts. I have to ask you to do that. Then, if there are any missing facts, just tell me in a reply.

On some of the items, I’ve added a small comment after the red question mark. That tells you I’m not sure if you have more information to add. Please either confirm I got it right, or tell me what I should change.

Always remember Irma, anything in your Gout Diary area is for you. When I write anything there in your name, I’m just doing it as your slave. Once you are happy with the way it works, I’ll tackle the outstanding question about diet. Plus any other burning questions you have.

As you get test results, you can add them as new topics. You can also do this for changes in symptoms, or anything else that you feel is relevant/useful. I envisage a topic for:
– Test results
– Today’s Symptoms
– Treatment changes

But, as I say, it’s up to you. Nothing is written in stone. Once facts and progress are recorded, we can summarize whenever you like. The important thing for me is, I can see all relevant facts whenever I answer you. I need that, because I can’t remember everything. And, I don’t have time to keep checking back on old topics.

Thank you, Irma, for helping me making Gout Diaries a useful new service for all gout sufferers.

[Keith Taylor]

Hi David,

Sorry for my delay in responding. Thank you for your patience.

Your problem is one of my main triggers for starting me on a rant. The others are:

• Normal uric acid levels.
• Sharp, needle-like uric acid crystals.
• Foods to avoid that cause gout.
• Vegetable purines.

There’s at least one more lurking in my mind. I’ll resist the temptation to think about my list of common gout misunderstandings. Let me focus on your common problem of gout flares during uric acid lowering.

To understand it, you need to understand how the gout pain pathway works. Now, that doesn’t mean understanding all the intricate biochemical details of inflammasomes and the inflammatory response. Even the best scientists in the world are still working out exactly how pain signals are generated during gout attacks.

I’m talking about the basic building blocks of the gout pain pathway. I call it U-D-R-P The Gout Pain Pathway. In a nutshell: gout pain results when our immune system is overwhelmed by the volume of invading uric acid crystals. The signals for reinforcements produce inflammation, which is the root of gout pain.

If we look a little closer at our immune system, we see how white blood cells fight uric acid crystals. White blood cells work by engulfing foreign invaders in our bodies. This kills bacteria and viruses, if they don’t kill us first. But uric acid crystals cannot be killed. However, once they are surrounded by white blood cells, uric acid crystals are no longer a threat. That is why gout attacks subside naturally in a few days.

There’s 3 interesting points here:
1. This process happens even on days when you do not have gout pain. Every day that uric acid is above your crystallization point, is a day that uric acid crystals are forming somewhere in your body. If the numbers are low, the crystals just get engulfed without fuss. Most days, there are insufficient crystals to cause an attack. But, our bodies are storing an increasing load of uric acid crystals coated in dead white blood cells. This is what we refer to as the uric acid burden.

2. Most of the uric acid crystal fighting is done by white blood cells that we developed for the purpose. But, other specialist cells get caught up in the battle. That includes the cells that were destined to repair bone, cartilage, tendons, etc. So, joints don’t get worn away by sharp crystals. The permanent damage is caused by the maintenance crew called to war. Do Gout Crystals Kill Tendons, Or Just Their Babies? Note that it isn’t just tendons. Those little babies destined to repair your heart valves aren’t spared. Gout is fatally brutal. If in doubt, read Can Gout Kill You?

3. At last, we get to your problem, David. Regular visitors get to know that my trigger points cause mammoth posts. Other rants are available.

Some of the foregoing isn’t really a rant. Every gout sufferer must realize the vital importance of lowering uric acid. If you do not get uric acid low enough to dissolve the uric acid burden, you will die a horrible death. I emphasize this, despite knowing that you are sensible, David. Other readers don’t always get it.

When uric acid levels fall, old crystals start to dissolve. When they do, the cloak of dead white blood cells falls away. For a short period of time, dissolving crystals are exposed to our immune system again. Battle recommences.

It can be a slight skirmish. It’s why we sometimes feel a little feverish when starting uric acid lowering. It can be a full blown gout flare. But, it differs from the battle we grew used to when crystals were forming.

I mentioned earlier, we often do not have a gout flare when the burden is growing slowly. But, uric acid lowering is a much faster process (if it’s done correctly!). So, we often experience pain in joints that we’ve never noticed before. Also, it usually affects more joints at the same time.

I think it’s now time for me to finish with my usual: “If you want clarification on any of the points I made, please ask”. That is not a trite response. I just condensed 10 years of research into an hour of writing. I’m bound to have missed something. And the only reason I do this is to help you understand your gout (and polish my ego, of course! 😉 )

The real reason this has caused me to write a longer post than normal, is your bloody doctor’s attitude. I have said on many occasions – I’m not here to bait doctors. But, this is the exact problem that leads to many gout sufferers stopping their treatment. Doctors talk of non-compliance as if everything is the gout sufferers fault. But, why would you continue taking something that is causing you pain, if you don’t understand the situation?

What’s worse is, it’s easy to avoid. The professional recommendations for gout management include clear guidance on pain control during the first six to twelve months of uric acid lowering.

Some gout patients are lucky. Like you, David, they might get by with occasional Advil, or similar. Others have their quality of life destroyed. Needlessly.

[Keith Taylor]

Thanks for the update Irma.

Sorry I didn’t start your gout diary. But, I now have more information to start it with. I’ll get on with it, as soon as I can.

I hope your latest treatments help you control your pain. Then, if you can get uric acid under control, you can start looking forward to better quality of life.

[Keith Taylor]

Sheetrock! I had it lurking at the back of my mind. It’s been too long since I watched Ty and the gang on EM:HE. Bad analogy anyway.

My summary is this: You’ve had a bad experience with allopurinol. It’s right to stop allopurinol if a rash shows. There are alternatives. If you don’t want other medicines, then diet might be right for you.

But, you must continue with monthly uric acid monitoring.

Obviously, I’m taking a remote view of your situation. But, the most likely explanation is your recent pains are a result of old uric acid crystals dissolving. It’s vital to continue that process to save further damage to your body, and continue your recovery process. That means keeping uric acid below 5.

I’m intrigued to know more about your gout diet. Let’s hope your advisers on that are better than your doctors.

[Keith Taylor]

Unrelated to this, I reminded myself that I have a page: Gout Foods Table for Fish.

That ought to be the “collection point” (i.e. main summary) of all matters relating to gout with fish and seafood.

As with all the suggestions, I’ll prioritize them when other people show an interest. You can mark topics as Favorite. But, the best way to draw my attention to a suggestion you are interested in, is to add a reply to it.

[Keith Taylor]

Andrew, I just noticed “significant pain in fingertips/toes, but it moves around to all of them, it does not stay in one place like it should.” [also see Migratory Gout discussions.]

When you are lowering uric acid, symptoms often move around in the way you describe. It is common to experience gout pain in joints that you have not previously noticed. It is common for multiple joints to be affected where previous gout attacks only affected one or two joints.

Why is this?

If you remember earlier (your Triggers topic, I think), I described how lowering uric acid can trigger gout attacks. The burden of uric acid crystals is spread unevenly throughout your body. Different rates of crystals dissolving produce different effects. Sometimes, crystals just produce mild feverishness or itching. Other times, it’s more acute. This is essentially random, because it’s from crystals that formed many months and years ago.

Like renovating an old house. Ceilings drop on your head in rooms where you never had problems before. Wear a hard hat for six months (or longer) until all that dangerous old drywall has gone. (apologies if I got the wrong American term for what we call plasterboard).

[Keith Taylor]

Andrew, you’ve got better percentages than me! You’ve got one third (33%) doctors who understand gout. I’ve only manage one in five (20%)! ❗

Actually, you are probably nearer two thirds. Your rheumy said there is no such thing as “pre-gout”. He has some gout knowledge, but he needs a good thesaurus. What you describe as “pre-gout” is known in the medical profession as “inter-critical gout”. Patrick just reminded us how dangerous inter-critical gout is. Even when you have no obvious gout symptoms, uric acid crystals are dangerous.

Why not invite your doctors here? I can congratulate your primary doc. I can show your best friend my gout symptoms survey that proves gout is more than a swollen big toe. I can help your rheumy create a gout thesaurus linking medical gout terms with common layman gout terms.

I don’t really like all this doctor baiting. I’m here to help you, Andrew. Not try prove medical points. You have a uric acid problem that should be easily controlled. If allopurinol isn’t right for you, there are other uric acid lowering meds. If pharmaceuticals don’t suit you, there are herbal and lifestyle options.

You might have noticed that I tagged this topic “Gout Victims Group” earlier. That’s because I thought you’d given up on trying to control uric acid. I hope I’m wrong.

Let me know how I can help you move forward, and control your gout in a way that makes you happy.

[Keith Taylor]

I have now implemented 2-tier gout support. The tiers are Casual Gout Help and Structured Gout Help.

Casual Gout Help is the usual gout forum. Ask whatever questions you like about gout, whenever you like. Optionally, you can add a Personal Gout Diary to help you organize your gout facts, management progress, and forward plans.

Structured Gout Help adds step-by-step advice to help you manage gout in a logical way. You must have a GoutPal Gout Diary before you can start structured help.

This suggestion is now closed for further comments. If you have any ideas about improving GoutPal gout support services, please add them to GoutPal’s Suggestion Box.

[Keith Taylor]

I agree with you 100% Patrick.

Andrew has displayed all the classic signs of gout attacks during uric acid lowering. As uric acid has been 7.1 in the past, that is a guaranteed buildup of uric acid crystals. We have absolutely no idea how long that burden has been accumulating. But, I never assume it is under control until the gout patient has gone six months with both of the following:

1. Uric acid consistently below 5mg/dL.
2. No gout pain symptoms.

How doctors can get it so wrong confounds me. But, I’ve been doing this long enough now to know that they frequently get gout management totally wrong.

I hope Andrew can answer one question:

What is the name and address of the so-called rheumatologist you have just consulted? I want to warn other gout sufferers to stay well away.

[Keith Taylor]

OK, Irma. I’m just catching up with other recent forum postings. Then, I will create a Personal Gout Diary for you. It will be later today, or early tomorrow.

[Keith Taylor]

Hey, Andrew, don’t get me wrong. It’s absolutely correct to be worried about rashes. But, only your doctor can test you to assess what is going wrong. Then, you can put it right. Switching from drug control to diet control might be the right thing to do. But, you have to make that judgment based on appropriate test results, and weighing up pros and cons of different approaches.

Where doctors don’t provide that level of personal guidance, I can suggest the right way to move things forward. Some doctors still stick with a ‘one-size-fits-all’ approach to gout treatment. All I can do in that situation is help you ask for specific tests, etc.

And, personal treatment should include your interests and preferences. So, if you want to improve muscle mass, your treatment plan has to allow for that. With treatment options, the current state of your gout, and personal preferences, we soon end up with hundreds of possible ways forward. That’s why I introduced Gout Groups to try and reduce the number of choices to manageable numbers.

I’m very concerned that you say “I’m still not sure which group I’m in!” We can still move forward without that. But, I really need to know why the 5 questions in Which Gout Group Am I In aren’t working for you. (Now replaced by Questions for Gout Sufferers)

Obviously, it’s easy for me, because I wrote it! But I’m trying to see it from your point of view. Please, can you tell me where I’m going wrong with those 5 questions? Then, I can try to improve it to make it easier to use.

[Keith Taylor]

No apology necessary Andrew! On my to-do list for longer than it should be is a note to explain my business model better. I’ll make an effort to do that. But, It’s Your GoutPal. I encourage members to question me directly about it. I want to be open, but my first concern is to give gout advice. That is primarily through general guidelines on GoutPal.com. But, gout management has to be personal, so I give personal help in these forums.

I have a lot of work to do. I published GoutPal.com to learn about my own gout. So, it’s heavily criticized for being hard to navigate. I don’t need it anymore. But, rather than close it, I’m trying to turn it into a better gout resource for everyone. I started that by identifying types of gout sufferer. Now, I’m reviewing every page to identify which gout group the information is relevant to. I’m also creating plans, lessons, and therapies that guide gout sufferers on a step-by-step journey to gout freedom.

It’s very exciting. Especially this week, as Carolyn has offered to start spreading the word in social networks.

I’ve never made a secret of the fact that GoutPal is funded by advertising. I also get product commissions from Amazon, eBay and similar. I haven’t kept that up-to-date. It’s another mini-project on the todo list.

So, money is certainly involved. I have to live. I’m proud that 2016 is, so far, the longest I’ve been able to sustain 100% income from my websites. There’s a huge “But” missing from that sentence. I won’t bore gout sufferers further with my personal situation, here. However, if you are interested, please ask in General Discussion. I want to explain to any doubters how this works. You are right to doubt. I am not your usual gout exploiter, and you deserve to know more about me.

Getting back to gout. Andrew, you’re the second GoutPal member today to worry me.

You’ve started recovery with allopurinol. But you stopped it without an alternative plan. You’ve taken up body-building, which brings me more visitors than any other pastime (explanation available for the asking).

[Keith Taylor]

Hi Irma,

I’m sad reading your pain problems. It’s really bad timing when it spoils a holiday. We tend to push ourselves. And unfamiliar sleeping and traveling adds extra stresses and strains. In the past, I’ve comforted myself with gout pain therapy that works for me. But, you seem to be taking the sort of combination that I’ve relied on in the past.

I’m concerned that you’re mixing 3 different NSAIDs. I believe: coxflam is meloxicam (Mobic), Vimovo is naproxen (Aleve, Naprosyn), and Volaren is diclofenac. Is this prescription controlled?

I think you need a doctor or pharmacist to review your combination urgently. Apart from my safety concern, I’m worried that you are not on the right dose. When pain is particularly severe, it’s vital to get the dose right. Of course, we always have to avoid overdose. We also need to see pain control as a short term solution. And, we need monthly kidney and liver function tests to guard against side effects. But, if the dose is not strong enough, the pain relief is largely a waste of time.

This applies to everyone, Irma. I’m not just picking on you. But, dosage is crucial when we are talking about gout medicines. One colchicine means nothing. Dosage descriptions should be something like: “0.6mg colchicine at bedtime, followed by 0.6mg colchicine in the morning if symptoms persist.”

Similarly, the anti-inflammatory and analgesic descriptions are very vague. I feel you’re floating somewhere between overdose risk and ineffectual underdose. It’s very worrying.

Finally, Irma, you’ve posted this in Personal Gout Diaries. Are you applying for a diary, or shall I move this to General Gout?

[Keith Taylor]

Thank you for your kind words, Andrew.

Here’s another example of my logic. It’s incomplete, because I don’t have all the facts. So, let’s call it a possibility. The most important missing fact is how long uric acid crystals have been building up in your body.

Usually, it takes a few years before uric acid crystals make their presence felt, as your first gout attack. Let me guess at five years.

Typically, it takes at least a year from the first attack before gout patients start uric acid lowering. So, I’m now guessing 6 years of uric acid crystals.

I have a rough ‘rule of thumb’ that it takes a month for every year of uric acid crystal buildup, to remove the risk of gout flares. There’s no real science to that. It’s just a general feel after 20 years of reading and writing about gout. You can shorten that period with lower uric acid, e.g, 3mg/dL or lower. You can lengthen it if allopurinol dose isn’t enough to get below 5.

My logic is that the most likely explanation, of what you are experiencing, is a usual reaction to lowering uric acid. And, it’s likely to continue for a few more months. Of course, you might be unlucky to have another arthritic disease running alongside gout. But, I think the most likely explanation is old crystals dissolving. In your position, I wouldn’t worry about other diseases just yet. Personally, I’d increase allopurinol to speed the debulking process. But, that’s just my personal choice.

I think your doing fine, Andrew. But, it’s perfectly natural to be apprehensive. Just keep posting about your concerns. It should make recovery easier.

[Keith Taylor]

Hi again Whitney,

“Got my blood drawn yesterday ” – does this mean you will have another uric acid blood test result soon? If so, please post the result.

If it helps, you can take a photo of the result and send the picture to me, via the Helpdesk. To send pictures, click the orange Gout Help button, then attach a file with the paperclip button. Or, send them using the “Attach a file” link on the GoutPal Helpdesk new ticket form.

[Author]

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