I usually offer as much help as I can, then qualify my remarks by advising the gout sufferer to seek medical attention.
But what should I do when your doctor’s advice is advice is clearly wrong?
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.
On my main gout advice website, I end every page with the disclaimer:
Information on GoutPal.com is to help you understand gout and related issues. It should not be used for diagnosing or treating any health problem or disease. The information is given to help you understand your doctor’s advice and know what questions to ask. It is not a substitute for professional care. If you have an actual or suspected health problem, you should consult your doctor.
On this site, Gout Pal Interactive, I assume visitors will realize it is a gout sufferers discussion arena, and accept the opinions and experiences offered by myself and other contributors are well-meaning amateur views. Maybe I should clarify this with a disclaimer on this site, but my aim is to help gout sufferers, not compound their suffering with meaningless get-out clauses.
The best answer I can come up with at the moment is to carry on giving the best advice that I can, and encourage others to do so. However, I am concerned that doctors who give bad advice need to learn the correct procedures. Perhaps, if you have concerns, you should raise them with the professional bodies in your country in an effort to save other people from potentially harmful practices.
My gout doctor says that taking Allopurinol during a gout flare up will just exacerbate it. He advised me to immediately switch to Colchicine when the flare up occurs and not to take it again until the flare up is gone.
Hi tingod,
This is really terrible advice.
Whilst there is some truth that allopurinol can cause a gout flare, it is doing this because it is making you better. If you stop taking allopurinol, you lose all its benefits. Many people do not realize that gout flares can occur during the first few months of allopurinol taking. These flares will become less painful, and less painful as time goes by. If flares do occur, you need to take colchicine or other pain medication at the same time, not instead of.
I do not know which country you are in, so I cannot advise the best medical authority to consult about allopurinol during acute gout flares, but every official medical authority I have seen, as well as advice from manufacturers, all say the same thing. If possible, avoid starting allopurinol during a gout attack, but once you do start, you should not stop.
Given your doctors lack of understanding, I strongly suggest you pay close attention to your uric acid levels and get them checked regularly. During the first few months of allopurinol treatment (or other uric acid lowering treatments such as febuxostat), you should aim for uric acid level around 3-4 mg/dL. After 6 months without a flare, and no visible signs of tophi, you can relax the target to 5mg/dL. Never, ever let it rise above 6.
The good news is, if you do this, in a few months you will be able to live a completely normal life, as daily allopurinol at the right dose is totally effective at controlling gout.
That sounds like good advice except my uric acid levels have never been high and I get my blood checked regularly. My gout has been confirmed by testing fluid from my knee and surgical removal of a gouty tophus from my toe. Other family members also don’t have high uric acid but get gout attacks. This is extremely frustrating since I exercise 4-5 days a week, walk at least 3-4 miles every day, rarely eat red meat – in other words, I don’t meet the “typical” criteria for a gout patient. Except I like to drink beer. But my mother never drank alcohol and had gout. And my brother quit drinking years ago and has gout. By the way – I am in the United States.
This mirrors my own frustration at the way gout is perceived and treated. Diet can play a part – it can make gout worse, and very occasionally cause it. If diet causes gout, it is usually through excess iron or obesity. Far too much is made of purines and alcohol. Both of these are excreted through the kidneys in non-gouty people.
Most gout is hereditary, and no amount of diet restriction will fix broken kidneys or the other aspects of metabolism that cause high uric acid leading to gout. Allopurinol, febuxostat, or probenecid are the only current treatments that will overcome these inherited shortfalls. You need a 24-hour urine test to see if you are a suitable candidate for probenecid. Next option is allopurinol starting with a low dose to ensure you are not allergic.
I am new to this site. I’m a 41 year old male who had my first flare at the age of 17. I wasn’t diagnosed until I was 19, due to the fact that I was very atheletic and my first few attacks occurred in my ankles and knees, and the assumption was that I had suffered some trauma to the joint. Over the years, my gout has gotten continually worse, as my liver won’t tolerate Probenicid, Allopurinol, or even Febuxastat (or Uloric). Over the last two years, I was involved in a study for Krystexxa, and it actually lowered my uric acid levels from over 8 down to 0. For the first time in my adult life, I went longer than three months without a flare. I went almost two years without one. Unfortunately, the damage has been done, as I now have osteoarthritis in both ankles and both knees. I guess I’m commenting here because, after 25 years, I’ve been to many doctors, both GP and Rheumatologists, and I’ve met more who knew less about gout than I did, than the very few who knew more. Educate yourself, learn as much as you can, and if you feel your doctor is giving you bad advice, seek a second or even a third opinion. Good doctor’s can give you specifics as to why they give the advice they do and back it up with information you can read for yourself. Doctors are like every other profession in the world, there are good ones and bad ones. I’m looking forward to being a part of this site going forward.
Welcome jfee,
Wise words. But, “down to 0”. That is interesting and surprising. I’ve always believed in going low, but never dreamed of zero. Did the professionals on the trial have anything to say about a zero level?
Evidently they weren’t allowed to comment to me one way or another, but my GP confirmed the results on many occasions over the two and a half year period. I left a more detailed description of the trial, testing and results in the welcome forum under my post “Nice to meet you!” I’m really excited about being a part of the forum. Most people I meet thing gout is a kind of foot fungus!! It’s nice to know there are people out there who understand what you go through!