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 »

I am a female my weight now is 105 lbs, I have always fought a low body weight and ate any and everything to keep weight on. I ate canned sardines and oysters; I love liverwurst!!

5 years ago I had severe pain in my hip for over a year (to the point of being disabled to work) and finally convinced my doctor to test my uric acid since gout runs in my family He argued that gout does not happen in the hip. (11.6 was the outcome).

My history is of being a commercial fishing captain where I sit in a chair with my feet propped out the window and my but being to lowest center of gravity.

My questions:

1. How often does gout occur in only the hip?
2. When it lasted as long as it did is there anything to help my hip (I rarely have flareups of gout but have constsnt pain from the prolonged gout)? I can not afford the MIR etc.. my doctor wants me to have.
3. How can I gain weight back?

Thank you very much for your time, I know this has been a long letter,
Terry

The most recent article on gout from the UK’s leading medical journal

Gout. The Lancet. Jan 2010.pdf (781 KB)

GoutPal Note:

This is an excellent summary on the current understanding of gout, and how best to treat it. Towards the end, the authors note:

patient information seems to be an outstanding issue in the management of gout—every patient should be informed about the disease, its curable nature, the targets and practicalities of drug therapy, how to prevent and handle flares, and the importance of lifestyle and dietary factors.

And that, my friends, is the GoutPal raison d’être.

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.

Hello, i run into web site after helplessly trying to get some info about gout. My dad is visiting me here, and he is having one of his attacks. He is 72.

I guess he was never diagnosed properly, and last 15 years he was given some non-steroid, anti-inflammatory medication. At the end he ended up in a hospital for a bleeding ulcer, and that was first time he was diagnosed with gout. That was last year in September.

His gout was so bad, that he couldn’t walk. He was given injections for pain and inflammation. They put him on allopurinol 100 mg. he got better, but never 100%. When he came here, I looked through his lab tests. Back in September his uric acid was 516 umol/l. Average should be 182-403. In November it was 400umol/l, and in December was 474umol/l. All this time he was taking 100mg allopurinol.

I was trying to contact his doctor and ask, and comment, that 100mg is not working for him, but no luck getting right answer. Right now he is having another attack, his elbow is swollen, hot ,red. His foot ankle has same problem. He is cold all the time, not a happy camper. I increased his allopurinol to 200mg one week ago.

Today we had his blood drawn, and I will know his uric acid measurements tomorrow. His diet is very healthy, no alcohol, lots of water. I am not giving him any ibuprofens because of his stomach ulcers.

Please advise about mg of allopurinol/ uric acid levels, or any other medication that might work. Do you know how long it takes for allopurinol to have an affect on uric acid? Thanks a lot. Nina

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 »

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.

View Larger Map
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.

Read the rest of this entry »

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

Read the rest of this entry »