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Andrew, this isn’t a complete response to your situation. I’ll just handle your main question. Then, if you need clarification, we can get the fundamentals right before tackling other issues. So, here’s my response to “do we know of a list of potential triggers?”
List of triggers for gout attack:
1. The immune system sees too many uric acid crystals than it can handle, so it sends out signals for reinforcements (more white blood cells needed).There is only one trigger for a gout attack. Creating white blood cells is a painful process for most people. White blood cells are very good, but they can’t kill inanimate invaders like uric acid crystals. They engulf the crystals, which hides them from our immune system, so inflammation slowly stops.
So, another question is: what triggers uric acid crystals to become visible to our immune system? That’s a list of 2:
1. New crystals grow. This can’t happen if your uric acid is 4.9mg/dL. So, we’ll forget it, unless you are exposed to prolonged intense cold. Uric acid crystallizes easier at lower temperatures.
2. Old crystals dissolve.
You absolutely need old crystals to dissolve. That is the only way to recover from years of excess uric acid. Everything we do to control gout has to involve lowering uric acid below the crystallization point. That has consequences. Just like recovering from a toothache, there’s a process that’s probably going to hurt. That’s why good doctors warn you that lowering uric acid can trigger a gout attack. Good doctors prepare you with gout pain therapy for as long as you need it.
As old crystals dissolve, they shed the coating that hid them from our immune system. Often, this goes unnoticed. Sometimes, there are enough partially dissolved uric acid crystals to trigger a gout attack. That’s why we need gout pain therapy until most of the old crystals have dissolved.
That’s the logic of gout triggers. Like the logic of gun triggers, you have to ask the right question. It’s nothing to do with the size or shape of the gun. It’s nothing to do with what the gunman ate for his dinner.
Is there a bullet in the gun?
Hi Johan,
It’s great to have another new member from South Africa. You’ve made some great points.
It’s fantastic that you’re seeing positive results with Puricos. Am I right in thinking that Puricos is 100% allopurinol? It’s good to see your gradual introduction: 100mg rising by 100mg increments. To make this a perfect introduction to allopurinol, dose should be guided by uric acid blood test results. The only reason for taking allopurinol is to get uric acid to your target uric acid level. That means you have to have a target that is safe, and suits your personal situation. It’s usually below 5mg/dL. But, every Gout Patient should have their own target. And, Target Uric Acid should be reviewed annually.
We don’t know anything about your uric acid levels Johan, so I can’t comment on whether 600mg is the right dose for you. If tophi are shrinking, it seems right without considering anything else. But, if the aim is tophi reduction, then I’d usually recommend maximum allopurinol for at least six months. Everyone is different.
Finally, on allopurinol dosing, it’s usually better to review and change dose every 2 weeks. That’s because it takes 2 weeks for allopurinol to stabilize. 1 week is probably OK if you have tophi. I say that because tophi sufferers should be aiming low as possible, so weekly blood tests are really a safety check rather than a dosing guide. That implies you are doing blood tests right, and getting liver and kidney function tests with your uric acid tests.
I agree with your recommendation against long term use of diclofenac, but that’s the first time I’ve seen a warning for kidney damage. I thought the biggest threat from long term NSAIDs was heart attacks. Anyway, it’s best to limit NSAID use for a few weeks while uric acid lowering does it’s job. I also agree that steroids are a very bad thing, but I respect other views if cortisone is a necessary last resort. My beef with steroid use is when they are used as a lazy first option before trying other effective remedies.
Finally, Johan, I’m intrigued by your Bantang diet. I’ve never heard of it before. Please would you be kind enough to start a new topic about Bantang diet and gout? I’d love to know what Bantang diet is, and how is it beneficial to gout sufferers?
Thanks for the wake up call Chris ๐
I’ve heard absolutely nothing from Urit-10 manufacturers. Let’s try a different approach. Can you give me all the details of the eBay seller you bought your uric acid test meter from? Also, any company information on the uric acid meter box and packaging.
As much info as possible always works best for me. Typing it all in is a pain. But, if you can photograph stuff, you can send me the uric acid meter information as an attachment when you create a ticket in the Helpdesk.
Thanks Carolyn. I guess that confirms my thoughts about Rennies. Every other antacid I looked at had some aluminum salts, or more exotic chemicals. Rennies seems to be a Ca-Mg carbonate combo that’s uniquely British. On the other hand, Carolyn’s description of the ravages of age seem very global, probably universal! ๐ ๐
I’m wondering if it’s more quackery along the lines of baking soda. My take on that is something like:
If you screw up your bodies chemistry, it just might interfere with the complicated gout pain pathway. That means you feel less gout pain – Hooray! ๐
But, the uric acid crystals you are ignoring continue to destroy tendons, cartilage, and bone. Then, they collect in lumps that damage your skin, kidneys, heart and all other organs except the brain – Boo! ๐ฅI assume the brain is spared so that dying gout victims can reflect on the stupid ignorance of their younger self.
The moral of that story is:
Control gout pain WHILE you control uric acid. Not INSTEAD OF!Thanks for the heads up on no-repeat for Krystexxa treatment. It makes sense, as we humans produce antibodies against the treatment.
I strongly suspect the pain you are experiencing is due to old crystals dissolving. Even with the fast dissolving at very low uric acid levels, there is a point in time where crystals are just starting to dissolve. At that point, our immune system springs into action. There’s evidence to suggest that prior gout attacks make us more sensitive to the gout pain process. If a large number of old crystals become exposed to our immune system, then gout flares are expected. It’s impossible to predict this, because we never know where old crystals are lurking. I know your doctor said all old crystals have gone. I suspect this might not be entirely true. Some old crystals might be partially shielded by old scar tissue. But, huge changes are taking place within the structure of your tophi. I believe there is a strong chance that some crystals are still being activated as your body recovers. Without an appropriate CAT scan (actually DECT), we might never know. I’m very hopeful that these will stop.
You’re in a rare situation John. As you’ve explained, very few people have completed Krystexxa treatment. Therefore, reports about patient’s recovery are almost unknown. Logically, all pain should resolve soon. Do you have anti-inflammatories to help, or do these also cause digestion problems?
I can’t find anything commercial from Prasco Labs. However, West-Ward have released Mitigare as a branded and generic colchicine. There are coupons at mitigare.com.
Best prices I have found is $76.01 at walgreens.com. That’s for 30 0.6mg doses. Best price for a similar pack of Mitigare at walmart.com is $104.52. However, I suspect the walgreens.com price is with coupon and the walmart.com price isn’t.
Sorry that’s a bit vague, but I can’t full check USA prescription prices from the UK.
It seems to me that doctors and insurance companies got used to the Colcrys fiasco, and just raised prices for their customers. It’s probably time to wake them up, and tell them we’ve moved on. ๐ก
Finally, I’ve found the reference about intermittent uric acid lowering treatment. I got it wrong when I suggested annual treatment. Perez-Ruiz believes that, if uric acid lowering is managed correctly, then allopurinol treatment every 5 years could become standard practice. Of course, this is not directly related to Krystexxa. But it underlines that pegloticase treatment might not need to be repeated very often.
In a hurry, I said “The only other thing is to keep mobile.”
That’s not strictly true.
The 3-pronged attack on pain is vital: Block Inflammation (colchicine). Reduce Inflammation (Anti-Inflammatory). Block Pain (Paracetamol/Acetaminophen, etc, etc). And, it’s vital that the package is dosed to gout strength and safety checked by a qualified doctor or pharmacist.
If that is done right, mobility should not be an issue. You might have some residual stiffness for the first 20-50 yards. But, that should pass. If not, do not push too hard – residual pain after your 3-pronged combination is an indication the package isn’t right.
The most important “other thing” is personalization.
I do not know of alternatives to colchicine, so leave it out if you can’t tolerate it. Some people opt for a steroid shot instead of colchicine/anti-inflammatory combo. Not for me, but it’s your choice. There are hundreds of anti-inflammatories and pain blockers. If your current choice isn’t working for you, ask your doctor for something else.
Irma, your last response is very close to what I was about to suggest.
Gout pain lingers, for most people I encounter in this forum, for one simple reason. They don’t take pain meds at gout strength. OTC doses are fine for those days when the gout pain isn’t too bad. For a full blown attack, it has to be a medically prescribed gout strength dose.
The other thing is that a combination is almost always required.
Colchicine slows inflammation but does nothing for immediate pain. It should be taken daily as a preventative (usually at the start of uric acid treatment), or as required. If taken as required, you have to take it at the first sign of an attack.
Anti-inflammatories are good for reducing inflammation, and this reduces pain.
Paracetamol blocks any residual pain.
Always check with your doctor, or a pharmacist, that combinations are safe. They will also advise what is the safe maximum for bad gout days.
The only other thing is to keep mobile. When pain hits, you often want to curl up in bed. But, the pain goes quicker, in my experience, with gentle exercise. Therefore, once the meds have made pain bearable, go for a walk, or a swim. This is vital advice for holiday enjoyment. Once you take control of gout pain, the tears pass. Then, you can focus on controlling uric acid, and stay gout free forever.
Krystexxa for Gout
Thank you, John!
I’ve been following the progress of Krystexxa since it was first developed as PEG-Uricase, and later pegloticase. I think you are only the second or third case I’ve heard of.
For those that need it, it is often the only way to get gout free. Like many drugs, it isn’t tolerated by everyone. And of course, people have to make their own decisions regarding the safety of medicines versus dangers of gout.
I think all gout sufferers can learn something from Krystexxa:
- It shows that very low, even zero, uric acid is safe.
- It shows that very low uric acid will shrink tophi.
I believe those facts support the view that uric acid lowering, for the first 6 months to 1 year, should aim as low as possible. Other commentators agree with this. I even remember a suggestion that uric acid lowering treatment might become an annual event for a few weeks to get uric acid as low as possible. Unfortunately, I can’t remember the reference.
One thing puzzles me – colchicine prices. I thought that the exclusive Colcrys license had expired, and generic colchicine available at reasonable prices. I reported that Prasco Labs had been authorized to produce generic colchicine in January 2015. Has anyone seen any change in this at the pharmacy counter?
Rod’s right to mention blood sugar levels. That’s the thing to get checked if you’re worried about too much sugar in your diet.
Unfortunately, there’s some very bad science that keeps getting written about on the Internet. This is largely promoted by a small group of people who make significant amounts of money selling fad diets or “special reports”.
Sugar can be a problem for gout sufferers where it leads to excess weight. Where it’s part of a healthy balanced diet, it should not be a problem. Therefore, a few pieces of fruit are OK. The things to watch are added sugars. Fructose is common, but any sugars added to food must be examined carefully. It’s not just sugar, though. Many processed foods have other additives besides sugar. Many of these are associated with increased uric acid. So, it’s best to change processed foods for natural whole foods.
Also, Irma, you mention cutting down on protein. It’s good to restrict animal protein. But, protein is good for gout. Therefore dairy proteins and plant proteins are a good replacement.
As you say, Whitney, it sure sounds like gout.
Is NP a Nurse Practitioner? In any case, I’ve got to assume if they diagnosed gout, then that is what it is. A rheumatologist might do more tests to get a clearer diagnosis. Let’s assume it’s gout for now, until we have more facts.
Uric acid level of 3.7 (presumably mg/dL) doesn’t support a gout diagnosis. But, 0.37mmol/L does. Could your test results be mmol/L? It’s unusual for USA, as all United States test results I’ve seen have been mg/dL. But, I’ve seen other scales in some USA gout studies, so might things be changing?
For now, I think the best thing is to try get hold of any previous uric acid test results. If you can get them, please post dates and exact numbers with the scale.
Sorry I can’t be more helpful, but that 3.7 is outside my experience. I cannot see any explanation for it. 5.7mg/dL, yes that’s gout. 4.7, maybe. But, 3.7? How!???
I look forward to your next report, after Wednesday, Dave.
As the timeline is a little vague, I can’t fully explain the small rise in your uric acid level. The most likely explanation is that levels can drop during an attack. This is because uric acid that would have raised your result, in dissolved state, has changed to gout-inducing crystals. Speculation.
I’m hoping your doctor says something like “increase allopurinol to 300mg per day. Arrange another blood test in 2 weeks. Take the naproxen, if you need it, at the first sign of a gout attack.”
It’s good to know your inflammation is not too severe. I hope you are one of the lucky ones who has a relatively pain-free recovery period.
Going back to your original post, I think you are managing this very well. The important thing is to talk about anything you are worried about as it happens. That’s what I’m here for. There’s every reason, Dave, to think that you’ll be completely gout-free in a few months. Then, you can stop worrying about diet. But, always eat healthy.
So, now I’m happy that you are getting uric acid under control, I’ll return to the start: “no alcohol, very little meat, no seafood and lots of fruit/vegetables. And about 3-4 litres of water per day!”
Alcohol is up to you.
Little meat is good. My mottoes are:
1. Meat as a treat (e.g. Mediterranean style eating).
2. Meat as a flavouring (I’m looking into it).
3. EFSEP – Eat Food. Sufficient. Especially Plants.Seafood is just a form of meat to me.
Lots of fruit/vegetables – brilliant for gout. Variety is good.
3-4 litres is up to you. The best advice is to disregard specific amounts. You need sufficient fluid to ensure urine is pale-straw coloured. Completely clear is an indication of over-hydration. All fluid counts, even the water content of food.
Hi Rod,
It’s great to read your contributions, and I hope your latest message encourages Dave to discuss his allopurinol dose with his doctor. But I have to add some points of my own:
Anti-inflammatories and allopurinol are entirely separate. Anti-inflammatories, reduce inflammation caused by our immune system response to the presence of uric acid crystals. They act within minutes, though the full effect might take hours.
Allopurinol reduces uric acid. If the reduction is below 5mg/dL (300μmol/L), uric acid crystals will eventually dissolve. Allopurinol starts working immediately, but maximum uric acid reduction takes up to two weeks. The effect of reducing uric acid takes at least 6 months to dissolve most uric acid crystals, often longer.Therefore, recovering gout sufferers often need anti-inflammatories for a few months, until most old uric acid crystals have dissolved. That is true for any uric acid lowering treatment, including febuxostat, or diet.
The recommended maximum dose for allopurinol is 800mg per day USA, and 900mg per day, UK. But, all doctors can prescribe whatever dose they think is best. Higher allopurinol doses might be justified, as long as they are medically supervised with frequent kidney function and liver function tests.
Purines might be in all foods, but, there are many different purines. Plant purines do not readily convert to uric acid in humans. Purine metabolism is complicated. But, the most important fact is that human flesh is the richest source of uric acid. Vegan diets need to be carefully managed, to avoid shortage of some essential nutrients. I need to do more research for the big picture. But, from a gout point of view, shortage of protein and calcium are big risk factors for gout in vegans. I’m interested in discussing vegan diet. However, Dave isn’t vegan, so I think it best to create a separate topic. (Now at Gout and vegans.)
That was Patrick, not me.
But, I agree with all he says.
Allopurinol should be supervised with blood tests. Pain control is different. You’ve taken colchicine in the past, and I believe you have a prescription for an anti-inflammatory, and paracetamol. That is all the ingredients for a great gout pain control plan. But, have you got the right recipe?
The fundamentals are in How do I stop Gout Pain?
Block inflammation, reduce inflammation, block residual pain.
It’s dose dependent, and everyone has there own pain threshold. But, bad gout pain always needs maximum safe dose. As ever, you should check with your doctor, or pharmacist, that the doses for each component are safe, and the meds are all compatible with each other.
Concerned might be the wrong word. Let’s say vigilant.
The reason for taking allopurinol is to get uric acid below 300μmol/L. Therefore, if I got that result, I would increase allopurinol dose. But, there might be medical reasons why that’s not appropriate in your case.
It’s time to discuss it with your doctor.
I can’t quite see the timeline. Is the first result during an attack before starting allopurinol?
Betsy, there’s very few bad foods for gout. But most gout sufferers make their diet worse by thinking that avoiding certain foods will avoid gout.
It doesn’t work that way.
Gout attacks are caused by what you ate many months, or years ago. So, fiddling with diet today is like working on the roof when your house has rising damp.
You have to address the fundamental issues that started your gout, in the past. For most gout sufferers, it’s your parents, or grandparents. Most gout is genetic. Where gout is hereditary, bad diet can make it worse. But, good diet does not necessarily make it better. That’s why I can never believe in general purpose gout diets. Because it’s personal.
However, I see many, many questions about food that don’t make sense. So, my thoughts about a standard diet are to help people make a healthy start. Personally, I hate diets. But, I love healthy eating styles. My mantra is EFSEP. Eat Food. Sufficient. Especially Plants.
It’s based on a similar sounding guide to nutrition. I simply want to use it for a base to show gout sufferers how to start eating healthy. So:
Eat Food – means avoiding additives, and factory-processed food-like substances. Additives often raise uric acid. Specifically, nitrites added to bacon and other processed meat raise uric acid.Sufficient – eat enough to match your activity levels. Gout increases when you are overweight.
Especially Plants – Vegetable purines do not raise uric acid in humans. In fact, since a plant based diet is normally alkalizing, vegetables and fruit are generally good for gout.
That would be my starting point if I ever decided to produce a gout diet. But, I still don’t think one diet is good enough. I think a range is better. Something that considers different types of gout sufferer. We’ve already spoken about gender. Do we need a gout diet for men, and one for women? I definitely think it would be wise to have a weight-loss gout diet, and a weight-maintenance diet.
Now, I’m thinking about other diseases that gout sufferers commonly have. Heart disease, high blood pressure, high cholesterol, etc. Perhaps I should start with diabetes.
If you let me know what a good diabetic diet is, with explanations of why it is good, I can probably adapt it to be gout-friendly.
For the reasons I mentioned, I don’t have menus or eating plans. But, I’m happy to help compile menus based on personal needs. I’m also happy to review existing eating plans to assess there gout-friendliness.
I’m definitely not going to use it to give advice to a diabetic. I have no ideas about best nutrition for diabetes. But, I am willing to learn.
