allopurinol

[Al O’Purinol]

I was subscribed allopurinol in’07 & had adverse reaction. Tried uloric once & felt crappy. Maybe in my mind. Help!

[Keith Taylor]

How did the allopurinol affect your kidney function and liver function test results? What dose were you on?

Same questions for Uloric.

Have you ever had a 24-hour urine test to assess your uric acid excretion rate? If not, that’s the best thing to do now, but wait at least two weeks since you last took Uloric. I assume that you are not taking any other medications or herbal remedies. If you are, I retract what I just wrote, and advise you to see a rheumatologist immediately.

[alan]

I control my gout strictly with a high fluid intake and diet, stay away from bad meats and try to only have meat at dinner, only drink red wine, etc…. i am personally scared to crap of allipurinal which seems to be so widely pushed on this site…go look at pictures of steven johnson syndrome and i will ask how you dare take this drug? i know folks with gout given allipurinal by their doc and never were told of the possibility of this syndrome nor what to look for or do if they get symptoms…. i think the risk of such a horrible deadly side effect from this med does not warrant taking it so you can eat meat and drink beer.

[Keith Taylor]

It always worries me when people say they control their gout but never quote uric acid levels.

There are lots of alternatives to allopurinol, and they fall into 4 groups:
1. Identifying root causes of excess uric acid, and removing them, if possible
2. Lifestyle changes
3. Herbal medicines
4. Pharmaceutical alternatives such as febuxostat (Uloric), probenecid, and others.

All 4 of those groups are widely pushed on this website. That’s because this is a website that helps individuals find their own best way to control excess uric acid. All people need to do is state which of these they prefer, and I will give the best advice to make uric acid safe.

The 5th alternative is ignoring excess uric acid. I do not help people do that, because it is dangerous. It is more dangerous to ignore excess uric acid than to treat it. Any doctor that causes Stevens?Johnson syndrome, is a dangerous fool. Anyone who thinks people take allopurinol just to eat meat and drink beer is misinformed.

The real issue here is:
Will @1oldswabby ever return to respond to thread he has started? If you’re listening George, don’t risk the dangers of untreated excess uric acid. Tell me if you want to avoid pharmaceuticals, and I’ll help you with your preferred solution. I can’t do it if you don’t respond here.

[alan]

thank you keith for a informative reply. i am due for a uric acid test…havent had one in over a year so no idea…no major flareups…i can sense when i might get one, urine smells different..foot will feel odd underneath, i cut out all meat take some advil..prob once a year i have to take 2 alleve and a colcochine 2x a day for a few days…thats my diet…yeah i eat meat too much prob but i dont eat lobster and clams and beer and shrimp and use gravy etc all stuff i wish i could.

any amount of allopurinol can cause steven johnson syndrome..not sure what you mean bout docs causing it are fools. the biggest cause and ultimately cause of death from this syndrome is from allopurinol. and this is a horrendous thing to go thru, scares me so much. i asked my doc if this med is safe for 50 years and she said she didnt know…not too encouraging.

i know only 1 person with gout and he takes the med to drink a 12 pack of beer so that is real.

i guess my questions would be : how safe do u think allopurinol is? what are long term dangers of uric acid like 7 – but that is not going to kill you, right? i have delt with this for about 15 years….thanks for your fine help.

[Keith Taylor]

Gout sufferers should make sure they get a uric acid test at least once a year. If you take any meds, you should also definitely get liver function and kidney function at the same time. I recommend these extra tests even if you are not taking meds. Untreated excess uric acid often leads to organ damage, so these tests once per year could save your life.

Stevens-Johnson Syndrome (SJS) caused by allopurinol only happens if the doctor prescribes recklessly. Many drugs are poisonous, so we should expect doctors to take care, and follow safe prescribing guidelines. But we know that some doctors are negligent. It is the negligent doctor that should be avoided, not the treatment. All medicines are a matter of risk management. A good doctor balances those risks carefully, to make sure that the patient is safe. International guidelines are now very clear on this. For most people, allopurinol is completely safe. People who are at risk of SJS and similar reactions can be identified by genetic screening. For everyone else, 100mg is safe, and that should be the starting dose. Monitoring patient reactions and bloodwork is the doctor’s responsibility throughout the treatment. How many doctors do this?

The simple fact is – yes, prolonged uric acid of 7mg/dL can kill you. It takes a long time, but it is a real risk. The common reason is heart failure or kidney failure. Kidney failure is usually the result of damage by kidney stones. Heart failure takes two forms that I know of, but there might be more. It can be as a result of valve damage caused by uric acid crystals around the heart valves. It can also be a more generalized cardiovascular reaction to inflammation in the blood system.

It’s right to worry about the dangers of allopurinol, but only if this is in the context of your own personal situation.

As I listed in my earlier response, there are 3 alternatives to taking drugs for lowering uric acid. If all these fail, then you can make an informed choice – do I risk death from drugs or death from gout? These risks can be quantified to a degree, but all we are really talking about is risk management. It is good to make the personal choices that are right for you. In my opinion, it is wrong to close your mind to real dangers, and it is pointless to choose some dangers but ignore others.

It is my responsibility to point out that gout can be fatal. If you turn round to me and say you fear drugs more than a painful lingering death from gout, then I can accept that. There isn’t much help I can give in those circumstances, but I’m happy to discuss it. What I really hate is gout sufferers making the wrong choices because they ignore the truth, or because their doctor takes an easy way. There’s not much I can do about that, except to be here when people seek help.

On a final note, Alan, it’s almost an interesting fact that you’ve had gout for 15 years. I had it for longer than that, and thought I had it under control. Then as I passed 50, all hell broke lose. More joints affected. Attacks nearly every week. Lumps forming under the skin. Restricted mobility in knees, ankles, elbows and shoulders. So I took control. I will still be here in another 15 years if you decide to take excess uric acid seriously.

I hope you will be.

[alan]

wow thanks keith for a very good and informative reply. kudos to you, and a question…why do you think docs dont know as much it seems as i do and certainly you do when it comes to gout???

you have me intrigued now about taking the med. i have never read that low dose allipurinol is 100 percent safe, i have read that any dose can cause the dreaded syndrome …do you have any stats on that…if that was the case i almost would be willing to start a 100 mg dose…my docs have suggested this for a long time but when i explain how i control with diet and fluids…i drink a ton about 150 oz at least a day…doc said as long as my heart and kidneys are fine that is ok…do you agree?? ….the docs say if i can control without meds this is the best approach. 4 docs have said that.

i do miss having a beer and shrimp and my wonderful chicken liver casserole and tukey with gravy..etc…have to admit that….

thanks for your help.

[Keith Taylor]

Family doctors have to know a bit about a lot of diseases. When we get gout, it takes over our lives. We read about it. Talk about it. Live it!

Doctors don’t seem to have the sort of quality control systems in place that I had to learn in business. They bury their mistakes. Things should get better with many guidelines from top professionals around the world. But too many doctors are still stuck in the “We’ve always done it this way” mindset.

I agree with doctors that say controlling gout without meds is the best approach. But all they see is you not going to bother them because you minimize pain, or deal with it. They should be calling you in at least once a year, making you understand if your uric acid levels are safe, borderline, risky, or dangerous. They should be helping you plan a diet that includes food that you like without damaging your gout. They should be advising you on exercises that do not cause more damage to gout-ridden joints.

This year, i hope to spend some time with one of the UK’s top personal trainers. Hopefully we can come up with some great gout exercises that suit all levels of activity. (Yes, Alan, I know – another ‘coming soon’). Also, another ‘coming soon’ are the safety stats for low dose allopurinol. I know that when I went on allopurinol, I checked these stats first, but I’m struggling to find them today. I was happy that 100mg never caused severe damage, though I was sure to look out for it. The stats are incorporated into the British, European, and American Rheumatologists Guidelines for gout treatment. I’ll need to check through the references to find the stats.

One point is that the British guidelines suggest 50 – 100 as the starting dose. Given your concerns, and risk aversion, I recommend 50mg if you do start. You’ll probably need to get a pill splitter for this. Rather than go into detail on the exact routine now, I say, if you want to start allopurinol safely, let’s start another thread to do it step by step.

I don’t agree that you can ignore excess uric acid as long as the heart and kidneys are OK. There’s enough evidence to prove that untreated high uric acid will eventually attack both those organs, along with every other organ in your body, except the brain. Therefore, it is a doctor’s duty to advise on proper uric acid control.

There are problems with avoiding beer, shrimp, chicken liver casserole etc. What do you replace them with? How do you know that the choices you make are the best ones, if your doc doesn’t check your uric acid every 3 months? He’s going to be in work as your health deteriorates as you get older. Why should he care?

There’s a lot you can achieve with gout diet, but are you prepared to test your urine pH every week/month?

Are you able to put percentage numbers against the part these food groups play in your weekly food intake:
Grains
Meats
Cured meats
Eggs
Cheeses
Legumes
Potatoes
Vegetables
Fruit & juices
Milk & dairies
Bread
This is where most people fall down with a healthy diet, because over half their weekly food intake is processed ready meals, takeaways and other food-like substances that are difficult to analyze, and very bad for gout.

Anyway, I’ve gone on long enough about this.

Rather than jumping around between here and facebook with loads of random questions, it is far better if you start a new topic with a single question. You can start a hundred of these if you want – eventually, it all comes together in a plan.

I think it’s best to start with what are the most important things to you, Alan. Do you want to go with easy allopurinol in a way you feel safe with? Or do you want to spend some time planning a gout friendly diet that works for you?

If your uric acid level is the 7 that you mentioned earlier, either way will be successful if you play by the rules. If your uric acid level is 9, you are unlikely to be able to survive much longer without uric acid lowering treatment, but a combination of good diet, and appropriate herbal medicine might do it.

Only you can judge which is best for you.

[alan]

ok will do..just to answer your food questions, my rule is anything with a heartbeat is bad, except for dairy, more the better…also avoid peanuts and soy…some meats worse than other for sure…i also do simple grains, white breat for example, no oatmeal….i am amazed how confused most are on what is bad to eat…a friend said his mother has gout so she eats fish since that isnt meat. those comments are why i love a list of good vs bad.

[Keith Taylor]

I’m still waiting for some feedback on the pages you were complaining about, Alan.

I’ve added a comment feature to all the pages on http://www.goutpal.com/

Can you go to the page(s) where you were expecting to find a list of good vs bad, and leave some comments. Tell me what you were expecting, and why you’re disappointed.

[Keith Taylor]

This thread about allopurinol started drifting into areas that have nothing to do with pharmaceutical ways of lowering uric acid.

I urge visitors who want to avoid daily medication not to hijack threads from other people who do not want to take that route. I believe in the right to choose.

You can choose allopurinol, or other medical alternatives. You can choose better diet, including all lifestyle improvements. You can choose a combination of both, if you wish.

I’ve moved some of the obvious diet posts to https://gout-pal.com/gout-pal-forum/please-help-my-gout/how-can-i-make-food-that-i-like-better-for-my-gout/#post-20122

Please go there, to discuss ways of treating your gout through lifestyle changes.

Apologies to @1oldswabby who came to ask about allopurinol. George, if you still need help with adverse reactions to allopurinol and Uloric, let’s get this thread back on track.

One of the things often missing with uric acid lowering medications is proper preparation and monitoring. Many doctors seem to neglect proper care.

Blood work is very important. Uric acid is the obvious test, and you cannot have proper uric acid control with drugs unless they are prescribed according to regular blood test results. Otherwise, you’re driving without a speedo!

Also vitally important are kidney function tests and liver function tests. Your doctor should have your baseline results on file before you start allopurinol, Uloric, or any other type of uric acid lowering medication. That way, if you do start to display adverse reactions, blood test results will tell your doctor if meds should be stopped, changed, or prescribed differently. Otherwise, you’re driving without oil and temperature warning signals!

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