Gout Pal Interactive

I had a chance encounter with screaming ignorance recently when Ben insisted that alcohol causes gout. A first class example of the ignorance that Seth describes as:

screaming is often a tool used to balance out the lazy ignorance of someone parroting opposition to an idea that they don’t understand

My skeptism, probably provoked by rudeness, was overly aggressive as I laid down a challenge to the no-alcohol-for-gout-sufferers brigade. I fear that my unwitting ignorance of the ways of the tribe leader might have caused upset to a caring contributor whilst doing nothing to weed out the menace of screaming ignorance.

Well, I’ll mark that as part of the learning curve. Learning about gout AND learning to lead the GoutPal tribe. It’s an interesting life.

Can you make the call on willfully ignorant vs. aggressively skeptical? Or can you accept a leader with unwitting ignorance and gentle skepticism?

One thing is for certain. The GoutPal tribe is wise, wonderful and witty.

I’ve started to pull out the gems from the forum, and opened topics for outstanding posts about gout cures and gout symptoms. I know there are many more, so please tell me when you spot them.

OK, I have not gone mad. First, let me remind you why managing uric acid levels is much more important than managing gout pain, then I will explain why I say “lowering uric acid is useless.”

Gout Pain And Tooth Decay

There is no link between gout and tooth decay, but regular readers will recognize my oft-vaunted (overused?) analogy.

When you visit a dentist to treat toothache, you expect an examination for decay, treatment of that decay, and pain relief to help you endure the treatment and associated soreness and gum inflammation.

Treatment for gout, ignoring complications such as allergies, and other health conditions, should be just as simple. Take allopurinol (or some other uric acid lowering therapy) and support this with pain relief, such as colchicine, until the allopurinol has removed the excess uric acid threat.

But what should be simple, rarely is.

Tooth decay treatment starts with drilling, and you know this is going to hurt. Do you know that, as with any uric acid lowering therapy, including diet, allopurinol treatment for gout can hurt? Many gout patients do not understand this, and so they stop taking the uric acid lowering treatment. The equivalent of leaving the dentist’s chair half way into the drilling process.

All dentists, and most of their patients, understand that all the decay must be drilled out before the cavity can be filled. Almost no gout patients, and very few healthcare practitioners understand that uric acid levels must be maintained below 6mg/dL (preferably below 5) to get rid of existing uric acid crystals. Frequent uric acid tests during uric acid lowering treatment are just as vital as frequent checks to see if all decay is removed.

Tooth decay treatment ends with agreeing an appointment for the next inspection. Nobody assumes that one dentist visit fixes everything. We continue with daily teeth cleaning and return to check all is well. The gout patient who has lowered uric acid long enough for all existing crystals to dissolve must continue with a daily maintenance dose of allopurinol (if necessary) and return for a uric acid test every three to six months. Even when symptom free, it is unwise to go longer than 12 months without testing blood for uric acid.

You can stop being a gout sufferer, but you can never stop being a gout patient.

Once you have had a gout attack, you have changed. You have lost your gout virginity. You can never become a person who has never had gout, but you do not need to return to being a gout sufferer. You just need to manage your uric acid level, and never let it rise above 6mg/dL again. Standard uric acid tests might declare you “normal” at 7 or even 8 mg/dL.

You are not standard. You are not a gout virgin. You must not let uric acid rise above 6mg/dL.

Managing uric acid

So if I feel so strongly about the importance of uric acid, why do I say “Lowering uric acid is useless?”

Because “Lowering” is not enough – you need to manage it.

Lowering uric acid from 9mg/dL to 7mg/dL is pointless. It might slow down the rate at which new uric acid crystals form, but it will do nothing for the existing urate deposits that are eating into your bones.

Lowering uric acid to below 6mg/dL, then letting it rise back up to 7 is worse than pointless. You will get pain from old crystals dissolving, then pain from new ones forming. You will be in a mess.

Lowering uric acid is simply not enough. Here is how to manage it.

Phase 1

Get uric acid down to Phase 1 Target Level (usually 5mg/dL – agree something lower than 6 with your doctor). It does not matter how you do it, just do it. Allopurinol is the obvious choice, but there are medical alternatives.

You may be tempted to rely on dietary / lifestyle changes – this is fine, as long as you definitely lower uric acid, and not just seek to stop the pain. In practice, dietary and lifestyle changes are not quick enough to get uric acid levels down immediately, so it is better to support your lifestyle plan with immediate allopurinol support. I call this my allopurinol / gout diet Combination Therapy.

Phase 2

Maintain uric acid below the Phase 1 target level until you achieve six consecutive months without a gout flare. During this phase, you will experience gout flares, but they will become less frequent, and less intense.

These gout flares are due to your immune system reacting to old uric acid crystals as they dissolve. I know it is hard to convince you that such pain should bring you joy, but each time you experience a gout flare when uric acid is permanently below 6mg/dL, you are getting better. Compare this with occasional gout flares from new crystals when your uric acid level is higher – every day moving nearer and nearer becoming crippled.

After 6 months without a gout flare, you can be certain all existing gout crystals have gone, and you are no longer a gout sufferer.

Phase 3

No longer a gout sufferer, but still a gout patient. Uric acid tests every 6 months to stay below 6mg/dL.

How many times have you heard or read a gout sufferer bemoaning the fact that their favorite food triggers gout?

We sympathize. Maybe offer condolences. Maybe offer alternatives. But we never congratulate.

So, why would we congratulate anyone who finds a gout trigger?

Because, in the right context, it is the key to controlling gout.

To understand why, you need to understand what gout is, and how gout pain is caused.

Gout pain is not a reaction to the food we eat, or not directly. Gout pain is the product of a pathway I call UDRP – excess Uric acid leads to urate Deposits which invoke an immune system Response that causes gout Pain.

Thus, a true gout trigger is one that triggers our immune system response. It is not a food that might (or might not) raise uric acid. It is not a chill to the joint that might encourage uric acid crystals to form. It is not a night on the town that leads to alcohol suppressing uric acid excretion. There is only one true gout trigger – the uric acid crystal.

So, why would we congratulate anyone who finds a uric acid crystal?

Because, if it is an old uric acid crystal, that is now exposed because it is dissolving, it is a sign that you are controlling your gout.

Of course, if this is just a random event, you are not in control, but if it is part of a uric acid lowering program then congratulations – you are winning the gout trigger game.

Each time you trigger a gout attack by lowering uric acid, you are winning the gout war, but if all you do is avoid gout triggers you are playing a dangerous game. The best gout treatment might trigger a gout attack by exposing old uric acid crystals as they dissolve.

If you avoid those good gout triggers, you can never win against gout.

You can upload your gout pictures via the gout forum. Please not that whilst anyone can post topics to the gout forum, only registered, logged in members can upload pictures. Registration is free, and adds many other useful features, so you may as well register. See the gout health forum guidelines for more information.

Most of your pictures will be relevant to the gout symptoms forum, but please note that I am interested in seeing any gout related pictures, so please feel free to send all your gout pictures.

How about pictures that reflect your gout treatment, or even your gout diet. Ours is a multi-national, multi-cultural gout forum, so what might seem mundane to you can be extremely interesting and valuable to other people.

For more information, or if you have questions, about uploading your pictures, please discuss in the gout pictures forum.

FDA review has been postponed from February to give time for additional analysis of cardiovascular risks.

You can find full details of the meeting, including Savient’s briefing submission on the FDA site.

So what does this mean for gout sufferers?

Assuming approval is given, do not be thinking that you have a newer, easier option for controlling your uric acid.

Krystexxa cannot be taken orally. You get dosed up every two weeks with 8mg delivered by intravenous injection.

As well as being inconvenient, there are fairly high documented reaction rates. On a positve side, it is good that severe gout sufferers have an alternative if they cannot tolerate allopurinol.

So expect plenty drug company stimulated hype over the next few weeks. In fact a gout forum regular has spotted early signs of the latest outbreak of gout hype.

It is such a pity that similar money and exposure does not go into fixing the two great fallacies inherent in healthcare regimes throughout the world:

1. Gout sufferers need better diagnosis. Too many patients are dismissed without gout because “normal” uric acid range is set too high.
2. Allopurinol is rarely prescribed properly. Most gout patients do not get the right dose, the right monitoring, or the right support.

I had reason to update this gout blog today, and took the opportunity to add a couple of tweaks to the gout forum.

One change is the ability to change the editor that you use to write your gouty stories. To do this, you first need to register as a member. I always recommend this as it gives so many extra features. In fact, I cannot see any reason for not registering, so if you have a reason, perhaps you could tell me by adding your comments below. Once you register, you can change the editor in your gout forum user profile. Try different options, and see which suits you best.

The second change is the ability for you to let the world know which gout topics you like, and also a chance to give the “thumbs down” to any that do not appeal to you. My main reason for doing this is to allow visitors to vote for improvemnts and research projects that I will start adding soon. More of that in another post soon, but I have already found an excellent use for this voting feature.

There is an excellent thread about some of the iniquities suffered by the gout patient.

There are several interesting points raised, which I hope to summarize later, but for now, I’m pleased to be able to vote for the outstanding contributions.

I am truly amazed and grateful for the depth of feeling expressed by the contributors to this topic. More than I could ever have hoped for, and an inspiration to me. Gout philosophy and life philosophy rolled into a thought provoking and educational discussion.

It doesn’t get better than this.

This intrigued me also, as it has others, and I found “Growth of monosodium urate monohydrate crystals: effect of cartilage and synovial fluid components on in vitro growth rates.”

In this study, Burt and Dutt found that

“Albumin significantly inhibited MSUM [monosodium urate monohydrate] crystallisation.”

Their findings apparently contradict other studies, which they suggest might be due to the difficulty of studying albumin which can be absorbed by lab equipment.

It is unfortunate that this is not the subject of much more analysis. It seems to me that there are substances (probably including iron), which promote uric acid crystallization. There must be others which inhibit it.

Interestingly, albumin is found in dairy products that have been shown to have a statistical link to lower incidence of gout.

Does anyone know of any current, or more recent, research in this area? The study I refer to was published in 1986.

The “shocking” statistics reveal that:

• 65% of adults admitted to being “not at all knowledgeable” about gout.
• Over 70% did not know that gout is a form of arthritis.
• 83% said they have not had their uric acid levels checked in the last five years, or weren’t sure if they had.
• 35% of gout sufferers said they have not had their uric acid levels checked in the last five years, or weren’t sure if they had.
• 49% of adults were not aware of the potential crippling effects of gout, such as needing to use a cane or walker, or having to stop working because of limited mobility.

But where did this data come from, and why does it matter?

It matters, because raising gout awareness might push more people into seeking early treatment. By controlling uric acid at the earliest opportunity, people can avoid or reduce the crippling effects of gout.

Such awareness would be good if it encouraged people to get wise advice on managing uric acid and safe alternatives for pain relief until uric acid was correctly controlled. It would be wonderful if the general practice doctor could be relied on for simple proven therapy that will allow gout patients to keep uric acid below 6mg/dL and live a pain free life.

We should praise the Gout & Uric Acid Education Society for pushing confirmed gout sufferers to seek treatment, and unconfirmed gout patients to seek diagnosis.

Unfortunately, experience (and abundant research) tells us that the doctor we rush to has, in many cases, little more knowledge about gout than we do.

Except, of course, they will have been primed by the manufacturers of recently released Uloric (febuxostat) and soon to be released Krystexxa (pegloticase / PEG-uricase / Puricase). They will know all about the new wonder drugs from Takeda and Savient – the very same pharmaceutical companies who sponsor the Gout & Uric Acid Education Society.

Free gout guides to help you understand your doctor and know the right questions to ask. Your free prescription for all the gout answers you need.

If you’ve coped with gout for a long time, MSNBC’s health reporter, JoNel Aleccia, would like to speak to you.

Jonel has thousands of health articles dotted around the Internet. Wouldn’t it be nice if one of them featured you!

She writes:

Hi, my name is JoNel Aleccia; I’m a reporter with msbnc.com. I’m
putting together a story about gout, specially timed to run during the
holidays, when many people are triggered. I’d like to speak to a
couple people who’ve coped with gout for a while. Phone here is
425-705-1839. E-mail is jonel.aleccia@msnbc.com

If you are interested, please get in touch with her, and mention GoutPal.