GoutPal Interactive

I know what the leading medical authorities suggest as the best way to manage gout because I research it every day.

I know what typical gout sufferers need to endure, because I am one.

I know when a doctor is giving bad advice. The first comment here is transferred from a separate discussion because it is extremely important. Yes, it refers to allopurinol, but it raises a much larger issue. The writer is clearly unsure about the professional advice given. In this case the advice is clearly wrong. But what should you do when you do not trust medical advice from professionals, and what should I do to give advice that you know you can rely on even though I cannot treat you professionally?

For my specific advice about allopurinol, please see my reply to the first comment. For a discussion on how to handle bad advice, please read on. Read the rest of this entry »

Colchicine Crisis Background

The FDA have recently approved colchicine as a brand for treatment of gout and Familial Mediterranean Fever (FMF). Colchicine is derived from the autumn crocus and has been recognized as an anti-inflammatory painkiller since ancient times. It has been available as a generic drug for decades, and there is no justification for allowing any branding rights.

In my earlier reports, I was unaware that the FDA gave exclusive colchicine rights to URL Pharma. I have learned that not only is t this true, but also URL Pharma are actively suing, or preparing to sue all other colchicine providers.

We require urgent government investigation into the forces that pushed the FDA into what is quite probably an illegal granting of the license on colchicine. But, more urgently, we need action now to suspend the FDA action immediately to prevent unnecessary suffering, and even death.

Colchicine Killer Crisis

For gout sufferers, there are (less effective) alternatives to colchicine, but this is not the case for FMF sufferers. I cannot state the case more urgently or more eloquently than Nancy Sparks Morrison has done in Colchicine and Colchrys – the PROBLEM. For Nancy and other FMF sufferers Colcrys is a killer that must be stopped now.

Is the misery of painful suffering, and worse, worth a few extra dollars for URL Pharma?

Price for generic colchicine has been about 11 cents per 0.6mg tablet.
Price for colcrys is going to be approx. $5.00 for 0.6mg tablet.

Except for the fact that I will DIE without colchicine treatment which completely stops the production of amyloids leading to death for FMF patients, I would agree with the complete boycott of colcrys.
Secondly, I will be unable to afford colcrys in any case.

I am terrified that I will go back to being bed-ridden and in excruciating pain, and DIE because I can not afford colcrys. I do NOT want to DIE.
,
Someone needs to look into price fixing.

The same substance. The same production cost. Profit from pain has never been more cynical, more unjust, more immoral than this.

Please Help Stop This Profit From Pain

Nancy has set up a FMF support group. Please join it and become active in your support for this campaign against pharmaceutical terror.

I have started 2 new forums, which I hope you will support, and encourage your friends and associates to support.

United States Colchicine Sources is to report places where US citizens can find supplies of quality assured colchicine.

Colchicine Campaign is to generate ideas for ending the Profit From Pain menace, and reporting on your efforts, problems and successes.

Please help those who need colchicine find it at an affordable price.

If you can help campaign against this injustice, I’ll see you in the forums, otherwise please just pass this on.

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.

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.

Allopurinol intolerant gout sufferers in the USA moved one step closer to an alternative gout fixer yesterday.

Though this does not bind the FDA to issuing approval for febuxostat, it represents a highly positive outcome and bodes well for a new treatment sometime in the next few months.

In this part of the approval process, evidence is considered by the committee. I’ll present some of the evidence in detail over the next few weeks. To set the scene, here is the summary, from “Briefing Document for Febuxostat” by Takeda Pharmaceuticals North America, Inc.

Summary and Conclusions

Febuxostat is a potent, nonpurine, selective inhibitor of Xanthine Oxidase (XO), which has been shown to be effective in reducing and maintaining serum uric acid (sUA) <6.0 mg/dL at doses of 40 mg and 80 mg. Maintaining these sUA levels is associated with the clinical benefits of tophi resolution and reduction in gout flare.

Febuxostat 40 mg and 80 mg provide an effective treatment option for patients with hyperuricemia and gout. Based on the clinical data, 40 mg and 80 mg are effective doses with 80 mg providing added benefit for patients with more severe disease.

Febuxostat also provides benefit in this patient population with comorbid conditions and has an advantage over allopurinol of not requiring dose adjustment in patients with mild to moderate renal impairment.

Febuxostat doses of 40 mg and 80 mg are well tolerated and have a similar safety profile as the currently marketed allopurinol. The rates of cardio-vascular (CV) events observed in the febuxostat clinical program were low. The potential CV risk was prospectively evaluated in the CONFIRMS Study and no difference in the rate of CV events was observed between febuxostat 80 mg and allopurinol; whereas, with its known risk of AHS, the risk in terms of severe rash is greater with allopurinol.

Febuxostat 40 mg and 80 mg doses are both recommended for approval to allow clinicians individualized dosing options. The 80 mg dose is more effective than 40 mg, especially in subjects with more severe disease as defined by the presence of tophi or higher sUA levels.

Overall, the benefits of febuxostat 40 mg and 80 mg clearly outweigh the risks and support approval of febuxostat for the treatment of hyperuricemia in patients with gout.

Thanks to chelseacharliwhite at Flickr.
Click on image for more details

Do Not Be Ruled By Food

“What food should I eat with gout?”

“What food should I avoid with gout?”

“Will [food] make my gout worse?”

The gout sufferer’s diet questions are endless, and the gout doctor’s diet advice is monotonous.

No Alcohol. Avoid purines. Lose weight.

Not particularly bad advice, but too general to be helpful, and too restrictive to be accepted.

The real danger here is that gout patients focus on food, and not on what really matters – controlling uric acid.

It’s heartening to see that some doctors are realizing that strict low purine diets are not the right way. “In treating gout, don’t overdo diet restrictions” is a refreshing article from Dr Robert Shmerling. He does not…

recommend strict dietary modifications after an initial attack of gout.

Like me, he points out the research showing weaknesses in strict low purine diets. Significantly he continues:

these studies looked at people who had not had gout before. They did not assess the effect of diet on people who already had gout.

In a nutshell, you need to stop obsessing about specific foods. Eat a healthy varied diet that satisfies you. Enjoy what you eat, but just eat enough to maintain a healthy weight, and exercise as often as you can.

Drastic changes simply do not work, and some can make your gout worse. Small improvements every few days soon make a big difference. Most importantly, you feel better because you’re in control.

To feel even more in control, learn more about gout. When you understand how gout pain is caused, and why uric acid control is so important, you are much better placed to help yourself, and ask the right questions of your doctor.

Your added bonus is that, when you are learning about gout, it helps you to stop worrying about food.

I’ve just seen some more out-of-date medical advice on a doctor’s website, and it’s making me seethe.

Everybody trusts these guys to give sound, current health advice, but what do they churn out?

Disproved speculation that at best does no good.

At worst, it condemns you to years of pain and discomfort. Years of low quality of life.

I’m tempted to name the offending site, but that would only single out one miscreant among the many – online and in their consulting rooms.

Instead, I’ll analyze a few quotes, and allow the diligent among you to guess where the site is by virtue of GoutPal’s Worldwide Search Engine.

The Symptoms

Our doctor starts with:

severe pain in the big toe…condition affects the age group 30 to 50 years old

So it could be gout. But what about 48% of gout sufferers who don’t get pain in the big toe?

What about the small number of people under 30 and the massive number of people over 50 who get gout? Will they not even be considered for a gout diagnosis?

The Diagnosis

Fatal Flaw #1.

To be sure therefore if your joint pains are due to this disease [gout], a simple blood test called uric acid can easily be determined in any lab

All that a uric acid blood test will tell you is how much uric acid is in your blood.

If it’s high, it suggests that you are at risk of uric acid crystals forming in your blood which may induce a gout attack in the near future (a bad thing).

If it is not high, and you are having a gout attack, it suggests that you might be suffering from a reaction to new uric acid crystals that have formed recently (a bad thing). Or you might be suffering from a reaction to old uric acid crystals dissolving (a good thing).

If it is normal, it tells you that your uric acid level is normal (a waste-of-time thing, but reassuring to some people who don’t understand gout).

A uric acid blood test, though useful as part of a program to reduce uric acid, will not tell you if you have gout.

Because a uric acid test is inconclusive, our inexperienced doctor will prolong the investigation, and repeat the inconclusive test, until he can conclude, rightly or wrongly, that you have, or do not have gout.

Find the last paragraph incomprehensible? At least it’s not in Latin.

Get a rheumatologist to perform a proper test for gout. That way, if you have gout, you can get treated fast. And if you haven’t, you won’t waste your time and money on gout cures when you have pseudogout, septic arthritis, bursitis, or one of the other conditions commonly misdiagnosed as gout (presumably as a result of an inconclusive uric acid test)

Our doctor should learn that:
A uric acid test can play an important role in managing the correct treatment of gout as part of a urate lowering strategy, but plays little or no part in the diagnosis of gout.

Let us assume that, by chance, we have a correct diagnosis of gout. Surely our doctor can prescribe the right treatment.

The Treatment

Fatal Flaw #2

Taking simple steps starting with our diet can go a long way in improving our health

I’m not sure it’s a starting point, but anyway, let’s consider the doctor’s gout diet advice?

NO NO if You Have GOUT or High Uric Acid:

* The NUMBER ONE on my list is ALCOHOL!!!!
* Anchovies
* Gravies
* Herring, Sardines
* Mussels or Tahong
* Internal Organs like liver, kidney
* Dinuguan, Chicharon Bulaklak
* Mackerel
* Patis and Soya Products
* Bacon and scallops

Use in Moderation:

* Crabs, Oysters, Shrimps, and eel
* Poultry and Meat [including] soup and broth
* Oatmeal
* Certain Veggies like asparagus, spinach, mushroom and cauliflower
* Legumes like beans or lentils

Let’s leave the alcohol for another discussion – do doctors always advise less alcohol so there is more for themselves?

The doctor’s recommended gout “diet” is the list of high/moderate purines in food that’s been kicking around since scientists discovered that uric acid comes from a certain type of protein in our bodies called purines. The key here is “in our bodies”, not in our mouths. Uric acid comes from cells in our bodies, not in our food. Whilst it is true that an imbalanced diet, rich in purines, can raise uric acid levels, this is true of many imbalanced diets. Including starvation.

This type of food advice is dangerous nonsense. At best, gout patients will stumble into a healthier diet by considering what they eat. At worst, as frequently happens, gout patients believe gout management is simply a food issue, and so they delay proper treatment.

Our doctor should learn that:
Where gout patients are overweight, but excrete uric acid normally through urine, gradual weight loss can reduce the amount of uric acid produced by the body. Patients who under-excrete uric acid will gain little benefit for gout from dietary changes and must focus first on medication to promote uric acid excretion.

The Consequences

As the above is published on a fairly prominent website, it attracts questions from many gout sufferers and their carers. These questions often give scant information, then are met with generalizations that could mean anything. Example:

[edited for clarity/spelling]
I’m 44 yrs old, 5′ 8″, 188 lbs. I first experienced pain in my left ankle 4 months ago w/c was diagnosed I have hyperuricemia. The pain went without medication. Now my left knee & its surrounding areas ached which sometimes makes walking difficult. What medicines should i take to lessen the uric acid?

My response would be something along the lines of:

I’m not a doctor, and can’t give specific medical advice, but my observations are:

• You are 9lbs away from clinical obesity, and excess weight is a significant factor for hyperuricemia.
• Hyperuricemia simply means higher than normal uric acid levels, though you haven’t said what your levels are, so I cannot confirm that diagnosis.
• High uric acid levels are a common cause of, but do not always result in, gout. You need to have fluid from the affected joint(s) tested to see if you have gout, and to rule out other diseases.
• After you have had the joint fluid test (arthrocentesis), consult your doctor for advice on which uric acid medication, or changes in lifestyle, suit you. He will carry out kidney function and other tests, and review your medical history and other medications. He will discuss this information with you to ensure you get the correct medication to suit your circumstances.

Instead, we get, from a doctor who is presumably qualified to give medical advice:

If the problem is really due to high uric acid and you have an inflammed joint, a specialist like a rheumatologist will do certain tests including getting a sample of your inflammed joint and to look at the fluid if they indeed contain uric acid crystals. Drugs like NSAID e.g ibuprofen, and Colchicine can reduce inflammation; But you may need drugs to reduce the production of uric acid like Allopurinol Talk to your doctor about these drugs.

I think “You need a rheumatologist as I’m not really up to explaining the complexities of gout” is a bit poor for an MD.

It is sad that ordinary people feel that they cannot trust their own doctor and seek information on the Internet. Perhaps the doctors busy lives mean they cannot explain conditions and treatments well enough to give patients the confidence to follow their advice.

It’s sadder still, that where doctors do have a platform on the Internet, and thus the resources to fully explain causes and effects of complex conditions like gout, they still fail to measure up.

Come on doctors. Raise your game.

Take a little extra care to keep up-to-date.

Take a little more time to check latest research.

Take a little more notice of all the needs of your patients.

Please stop killing our health.

What can make gout pain worse? Nothing is worse than bone erosion from tophi. Except the BS from gout experts who are supposed to be helping us with better gout therapy.

This article has been deleted.

If you feel there is no hope for gout sufferers, or if you feel that there is hope, please discuss in the gout forum.

This one is to allopurinol takers everywhere.

Every week, I get messages from gout sufferers, and their carers, about problems with allopurinol. Most of these show that absolutely no thought has gone into the treatment.

If you bought a car with only two wheels, would you accept it and drive round in a shower of sparks?
If you called a plumber to fix your leak, would you be happy to pay a weeks wages for him to merely turn the water off?
Would you pay an optician who grabbed the nearest pair of specs and said, “Here, these will do,” without testing your eyes?

Why take allopurinol without checking that it is doing it’s job?
Read the rest of this entry »