Gout Pal Interactive

Prompted by a tidying up of old forum discussions, I notice that there are occasional calls for recommendations for a doctor with good gout knowledge. Rarely are these answered, but some of that may be due to the way topics that ask that question are scattered over many forums.

I’ve decided to try and build a list of recommended gout doctors, and I can only do it with your help.

If your doctor is particularly good with gout, please pass on their details, but first contact them to check this is OK. I will start a new list organized by country and region with the details.

Similarly, if you are looking for a gout specialist, please say which area you are prepared to travel to.

To kick things off, the old message that I have just deleted was seeking a gout doctor in London UK, but prepared to travel to the home counties. Nobody was able to respond at the time. Do you know a suitable gout doctor?

Also, a gout specialist was named in a different context, but the writer didn’t actually say he was any good or not. This makes me realize that if you are going to recommend someone, you should say why.

US biotech firm BioCryst Pharmaceuticals, Inc recently announced the initiation of a Phase 2 human clinical trial of the drug candidate BCX4208 in patients suffering from gout.

BCX4208, co-developed by New Zealand crown research institute IRL, is a next generation purine nucleoside phosphorylase (PNP) inhibitor, which a recent study shows may have utility in diseases dependent on T-cells, B-cells or uric acid.

The latest trial is designed to determine the effect of different doses of orally administered BCX4208 on uric acid levels in the blood, the build-up of which can lead to the often painful condition known as gout.

BCX4208 differs from existing gout treatments in that it targets an enzyme known as PNP (purine nucleoside phosphorylase). This novel mechanism gives the drug candidate the potential to address unmet medical needs across a broad spectrum of inflammatory diseases in which this enzyme plays a role. It has the potential for once-a day dosing suitable for chronic administration and has been shown to be well tolerated in safety studies. Existing treatments have a range of side effects.

Dr Jacquie Harper, who leads the gout research programme at Malaghan Institute of Medical Research in Wellington, NZ, says: “Gout prevalence is increasing worldwide and is a real problem in New Zealand. A major risk factor for developing gout is excessive uric acid levels in the blood but the choice of uric acid lowering drugs is limited. A new, well-tolerated treatment for controlling uric acid levels would be good news for gout sufferers.”

Dr Richard Furneaux, who heads IRL’s Industrial Biotechnology research, says: “BCX4208 is the second drug candidate we have discovered in collaboration with Professor Vern L Schramm, the Ruth Merns Chair in Biochemistry at the Albert Einstein College of Medicine at Yeshiva University in New York City. Our first is in a pivotal Phase 2b human cancer trial for Cutaneous T-Cell Lymphoma with results expected in 2010.”

The gout trial is recruiting 120 patients at 12 hospitals in the US and is expected to run till September 2010.

There is an interesting video news clip, Relief for gout sufferers thanks to Kiwi company, with some ‘juicy’ gout images.

Xanthine oxidase reduction by quercetin fascinates me.

Xanthine Oxide Reducing Insect

Can tea, onions, apples and other foods hold the secret for natural gout cures? Lots of scientists are looking, but extracting the active ingredients is hard.

This is really bugging me! But, could bugs be the answer?

Quercetin is a member of the flavonoid group of compounds. These compounds occur naturally in plants, and have been shown to have properties that are beneficial to health.

Quercetin has been studied in several recent investigations to assess it’s ability to inhibit xanthine oxidase (XO). Both allopurinol and febuxostat work by XO inhibition.

Unfortunately, the quercetin studies are largely confined to laboratory experiments with occasional animal tests. Animal tests so far have not shown success, and this appears to be down to solubility of quercetin.

Just as I thought I had finished reviewing relevant research, I spotted a mention of quercetin buried deep in a study of large cabbage white caterpillars. So deep, that I cannot assess if quercetin is actually relevant, but it does not matter – the abstract is fascinating.

Read the rest of this entry »

First, I should point out that the offending article was 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.

Radiant Research in Texas have announced a new gout investigational medicine research project.

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Details are few, but the researchers are looking for participants who experience occasional gout flares.

Qualified participants will receive all study related care and investigational medication at no charge and may be compensated up to $350 for time and travel.

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Though most gout patients – or at least the ones who read GoutPal.com – understand the importance of lowering uric acid, many are concerned about medication side effects.

To put this into context, the side-effects of NOT lowering uric acid are extensive bone, cartilage, and tendon damage for gout sufferers. This is permanent damage caused by urate crystals, but so slow that you do not notice until it is too late. Another side-effect of high uric acid in the blood is an increased risk of kidney stones. These can cause permanent kidney damage, and they are extremely painful. So, before you dismiss urate lowering therapy for fear of the (often low) risk of side effects, consider carefully the (almost certain) risks of doing nothing.

I’ve written about allopurinol side effects before, but now that we have a new uric acid lowering drug, febuxostat, gout patients are wondering if this has fewer effects.

A clear side-by-side comparison is beyond the scope of this article. There are several comparative studies, but none, as far as I am aware, are a strict comparison of doses at similar uric acid levels.

Febuxostat launched recently in the US under the brand Uloric. Previously, it was launched in Europe under the brand Adenuric. Earlier this month, the European Public Assessment Report for Adenuric was updated, which includes summaries of side effects from trials of febuxostat for gout patients.

Febuxostat Side Effects

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When you ask the bank manager for your account balance, does “OK, Nothing to worry about?” make you happy? Do you accept “Normal” and rush out on a spending spree?

Of course not. You need the number. And here is why.

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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.

As part of the approval submission, URL Pharma have done dosage tests and conclude that lower doses than the “traditional” 4.8mg per day are just as effective. They suggest that 2 tablets (1.2mg) followed by a further .6mg tablet one hour later is the best dose.

You can read more patient information about colchicine dosing and side effects in Read the rest of this entry »