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Keith TaylorParticipant
Hi again James,
I think this is a big subject that you have broached. Because, I can’t help thinking that it involves explaining something like the life-cycle of uric acid crystals. So, that would highlight factors that affect formation, location, duration, and resolution. Therefore, it’s a big project. But, I already have one massive project at the moment which is to complete the reorganisation of practical tips for different types of gout sufferer.
Now, I’m not shying away from this. But, I have to think of the value it will give compared to the time taken. So, I have 2 ways to tackle projects that involve explanations beyond a simple short question and answer session.
1. Create a suggestion to publish on GoutPal.com. That can be an enhancement to an existing page. Or, it can be a new page. Either way, you need to browse existing suggestions. Then either comment on a suitable suggestion. Or, start a new suggestion. Because, It’s Your GoutPal.
Or, 2. Create a personal plan to learn what you need to know. Although I assumed that service would mainly be used for treatment plans, it’s equally suited to learning plans. But, you have to start a personal gout diary first. Because, I have to create a meaningful space where we can run question and answer sessions to meet your goals. Ultimately, this might be a better option. Especially if you want heavy involvement in the direction of the project. Because whatever we produce, I can adapt for the millions of anonymous gout sufferers reading GoutPal.com.
I won’t lie. Both of these options require some effort on your part James. But, you don’t seem frightened to get stuck in.
Finally, for point 5, which I think is relevant to everyone on allopurinol. Irrespective of wanting to learn about uric acid crystal lifecycles.
Let’s imagine you recover from gout with allopurinol. It is true that uric acid crystals will start to grow again as soon as concentration breaches the crystallisation point. But, if you’ve had a good clear out, you can last for years without having another gout flare.
So, in the report attached to http://www.goutpal.com/1629/is-allopurinol-a-lifetime-drug/ Perez-Ruiz claims over 4 years. But, note this is entirely dependent on getting uric acid below 300 μmol/L during treatment. Then, the time depends on what it rises to when you stop allopurinol. Therefore, once again, we see that gout has to be managed on an individual basis. Who’s to say that you couldn’t last 13 years if you do 3 years on maximum allopurinol? Or, maybe you have to do 15 years on maximum allopurinol and 13 years off. It’s just a numbers game that nobody can predict. All we know is that uric acid crystals will form again if uric acid rises above crystallisation point.
However, before gout flares become obvious, the uric acid crystals cause a lot of damage. So, if DECT was more widely available, it would be easy to get an annual check that would tell you when to restart allopurinol. I hope that day is not too many years away. When uric acid control stops being a guessing game, and starts being managed based on exactly what is happening in our bodies.
Keith TaylorParticipantHi Elizabeth ( @elizabeth-bowman ),
“Is it worth the risk of increasing my uric acid levels to get off the meds?”Exactly what are your uric acid levels? Can you post as many results as possible, with dates please. Because, I can’t really give relevant advice without that information.
You can avoid wrongly prescribed allopurinol. Or, change it for a better plan.
Keith TaylorParticipantFundamentally, I’d say there is no need to worry about gout diet if you are successfully controlling uric acid with Feburic (febuxostat). But, there are two important considerations:
1. Your diet must remain healthy. There’s general healthy nutrition advice for India at https://www.nhp.gov.in/healthlyliving/healthy-nutrition
I haven’t researched this in detail. But, it looks better value than the so-called advice from someone trying to sell supplements. Are casein pills safe? Why not just drink milk for better uric acid control?
2. If you aim to reduce reliance on Feburic after dissolving most uric acid crystals, you will need specific help to get a better gout diet. Start with a personal gout diary. Then, ask about a personal gout diet plan.Also, you might like to join the Meatless Protein and Gout discussion.
According to the Febuxostat label, there’s no restriction on time of day, or meals. But, it makes sense to take Feburic around the same time each day. More importantly, be sure to get liver function tests when you’re on febuxostat.
Keith TaylorParticipantI agree with nobody’s “You shouldnโt focus too much on the fact some people have achieved an UA reduction with that diet”.
But, to help a little with exactly what you’re looking for Lance, have a look at my High Protein Foods list. Initially, it’s ordered by the amount of protein in a 100g serving. In the first 100, I spotted a couple of cheeses, my beloved spinach, asparagus, broccoli, and eggs. Also, it begs the question if the macronutrient ratio should balance over a day or a week??? โ
Anyway, I’ve included that 40-30-30 (Zone) diet page in my suggestion: Review Foundation Diet Pages. I’m suddenly taken by the idea that a great way to start gout dieting would be:
1. Arrange monthly uric acid tests (doc, lab, or home, according to preference).
2. Between tests, trial one of the foundation diets.
3. Repeat with second and third choices.
4. Compare uric acid test results, and repeat trials if necessary.
5. Choose preferred eating style then tweak for better uric acid control, as required.It would probably help to track weight. Also, exercise if that is significant. Personally, I’d include gout symptoms. But, I’m a data geek!
Also, personally, I’m not a fan of protein supplements. Unless you call smothering everything with spinach a form of supplementation! So, I’d definitely investigate safety research before starting any supplement.
Protein is great for gout. It encourages uric acid excretion. But, where do you get protein on a vegetarian diet? Get your veggie proteins for gout, now.
Keith TaylorParticipantIt’s not the Alkaline Ash diet, which is scientifically disgraceful. Yet perfectly designed to help Internet Marketers make loads of cash. Even the “alkaline diet for dummies” book uses it. I’m trying to battle against it with the correct way to score alkaline diet. But, I’m finding it difficult to get time to keep that site alive.
Also, I found “In defense of food” and realized that food scoring systems are probably overvalued. So I turned “Eat food, not too much, mostly plants” into EFSEP. Another grand idea of mine that needs some effort. Ah well, maybe next week. Anyway, thanks for reminding me of it in your Week 6 update. I think I need to spend some of my gout time on my nutrition websites.
The more I read, the more I realize how healthy food is more important. Drugs have their uses in correcting diseases. But, I think it’s wrong to use them to correct bad diet. To be clear, I’m not saying that gout is an eating disorder. But, treating gout with allopurinol without correcting bad diet will just allow other diseases to hit us. So, we end up with gout fixed, then get heart disease, diabetes. Or, one of the other metabolic syndrome X diseases.
Keith TaylorParticipantI owe you a million apologies, Lance.
My reply about rules is absolute trash. As is the link to stupid rules. I’ve trashed them, and I’m so pleased they didn’t put you off. I replaced the rules with something I hope is more helpful: http://goutpal.net/forums/topic/how-to-post-your-personal-gout-profile/#post-3001
It’s your diary forum, and you should use it however it suits you. Why did I ever think that it matters where you ask a question?!?!?
Anyway, you can organize your diary however it suits you. And if you need to ask questions, just ask them! Wherever you like.
Keith TaylorParticipantThank Steve,
a slow ramp up might be helpful to prevent gout attacks that can happen while people are starting to increase dosages
When you get chance, could you ask him for any research references on that. I agree with the ramp-up. But I want you to stay safe. I need to be convinced that increasing from 100 to 200mg allopurinol per day without liver function and kidney function tests is safe. Statistically, it’s very safe. But, I’d hate you to be one of the tiny minority that gets caught out. Maybe this tight-assed Brit needs a lesson in chilling from the Wild West!?!
That itching thing is weird, but I’m glad it’s getting less. I’m trying to resist making comments about affirming the itching isn’t serious with blood tests. [oops! I didn’t try very hard, did I?]
Finally, welcome to your gout diary. I hope to publish some helpful guidance soon. Anyway, it’s yours to do as you like.
Keith TaylorParticipantIt could be, Johnson. But it just doesn’t sound like gout to me. If it’s still swollen, I’d get it checked. Because gout attacks should resolve themselves in a week. Also, attacks caused by partially dissolved crystals usually affect more than one area (but not always).
Keith TaylorParticipantLance, this is awesome! I’m kicking myself for an unscheduled week off. I’m back tomorrow and I’ll study this better.
Keith TaylorParticipantAgain, quickly, then I’ll return for more detail if needed.
1) Osmosis! Crystals, coated or otherwise won’t pass through most membranes that stop your entire body falling out of your arse. Apologies! – I’ll look up the right words later.
2) More osmosis. All to do with organic compounds reacting to differential concentration. It’s molecular. Somewhere in the old forum there’s an explanation I gave to an inorganic chemist who refused to believe it could happen. I’ll find it when I return. (try searching for combinations of urate, monosodium, crystals, organic, inorganic, chemistry, hansinnm, zip2play)
3) Inflammation is all about the immune system calling for reinforcements. I’m discussing it ith myself at the moment in http://goutpal.net/forums/topic/free-fatty-acids-ffa-and-gout/#post-2872
4) Temperature is often the main factor. But, there are others. I just can’t think of the main ones now. They cease to matter if you get below 300! (Sorry to harp on, James).
5) Because your rheumatologist is an idiot. I.e. it is simply not true. (maybe search for ‘allopurinol vacation’). [Quick check – yes it’s there! 3rd result – Is allopurinol a lifetime drug?]
Tell me which bits need better explanation.
Keith TaylorParticipantJames, your rheumatologist needs to read something from this century! Send him here for some education.
This is brief, but I’ll expand later as necessary.
I might have given the impression that you have to choose between drugs, herbs, or food to manage uric acid. That’s not true, so I’ll review my gout sufferer advice to ensure it’s clear:
1. You can mix and match drugs, herbs, and food. But normally, one is dominant. Hence Gout Patient, Gout Herbalist, Gout Dieter. That’s the quickest way to start a comprehensive gout recovery plan. Then, in the detail stage, you can pick appropriate therapies from each type.2. You can change gout sufferer type between different stages of uric acid control:
a) Preparation
b) Titration
c) Debulking
d) MaintenanceDo me a favor guys. If there’s anything obvious in my plans that contradict that, can you let me know. The plans start at Questions for Gout Sufferers, then link to GoutPal Plan for…
Thanks
Keith TaylorParticipantHi Tina,
It doesn’t matter if topics have been discussed before. So, you should always feel free to ask whenever you like.
Of course, I always recommend a quick search first. But, it’s certainly not compulsory. Anyway, I’ve spent quite a lot of time searching since I first saw your post. But I cannot find anything about Uloric and hair loss. Even when I tried febuxostat (which is the drug within the Uloric brand), I couldn’t find anything. So, in the end, I just searched for hair loss within the GoutPal Search Engine.
Surprisingly, that did reveal a link between colchicine and hair loss. In a long list of clinical effects of Colchicine Medication, I found:
Alopecia begins at about the 12th day and is complete by 3 weeks after ingestion. Hair regrowth begins after the first month.
Have you changed your colchicine dosage recently? Maybe it’s time to discuss alternatives to colchicine with your doctor.
As for increasing your Uloric dose, I don’t know enough about your current symptoms. Or, your history of meds, symptoms, and test results. So, I can only say, if you were me, you should increase for six months, then review. Do you want to explain why you are considering increasing Uloric from 40ย mg to 80 mg? Generally speaking, it seems the best plan to me. But, I don’t know enough about you to say if it’s best for you.
Be sure to get kidney function and liver function tests at least once a year. Liver monitoring is especially important with Uloric.
Keith TaylorParticipantI’d say 388 is a kiss away from danger. It’s certainly very much in a range of Gout Hell. I’ve upgraded my article to try and make it clearer. See http://www.goutpal.com/9942/ouch-why-does-gout-recovery-hurt/why-does-gout-recovery-hurt-history/ and find the [*] explanation.
So, I believe you cannot tell if your flares are from new crystals forming, or old ones dissolving. And the sooner you get the right dose of allopurinol the better. There’s far less chance of a flare below 300. And, the lower you get your uric acid, the quicker your gout is fully recovered.
Keith TaylorParticipantI just thought of another gout analogy. Because, they often pop into my head when I’m trying to understand why people develop crazy notions about gout. Such as when I’m thinking about the wonders of natural alternatives to allopurinol.
So, I was thinking of people avoiding allopurinol when they have gout pain. Although, this applies to all forms of XOI.
As I have often said, there’s no point in avoiding uric acid treatment just because you have a gout flare. But, the gouty myth persists. Therefore, today’s gout analogy is:
Avoiding allopurinol when a gout flare visits, is like hiding the birth control pills when your friend brings her baby round.
When you understand that. You understand gout.
Keith TaylorParticipantThanks for your closing comment, Lance. In fact, thanks for all your comments. Because, I need gout sufferers like you, who bravely ask all the right questions, instead of lurking silently.
Following another new Gout Diary requester (Ian), I’ve continued to refine the rules. So, I hope that you have seen my update at http://goutpal.net/forums/topic/how-to-post-your-personal-gout-profile/#post-2919
If you haven’t seen it, please consider subscribing to my updates by email service. Just click below on the button labeled ‘Subscribe to Gout Network Updates’Now, I need to clarify the rules about asking questions.
If you ask questions in the normal gout forum (i.e. Click the green Ask Now button), I try to answer them. But, if you ask questions in this gout diary, I assume they are prompts to yourself. Because, it’s useful to jot down working questions before you are ready to ask publicly
I realize that is pedantic, but it has to work this way. I need to keep Gout Diaries for Personal Gout Facts. Then separately, the Main Gout Forum answers specific questions.
Once we get that process established, we can move on to Structured Gout Help projects. By which time, you might have several questions that will form the basis of a structured help project. Sorry it’s a bit messy. But, you’re a trailblazer, so you have to be patient, as well as daring.
To be clear, you should post that question about short term vs long term allopurinol use, if you want me to reply. Otherwise, I assume it’s your personal note to yourself as you gather more facts.
Keith TaylorParticipantThanks for posting about your gout and raw lemon juice. So that I can answer your questions better, I need some more information.
Because, I’m not sure what you mean by:
This helps to keep my uric acid level at normal
Can you explain how you test your uric acid (home meter, doctor, etc). Also, do you have any test results that compare now, with before you started regular lemon juice?
Keith TaylorParticipantHey Lance, this replying to yourself thing is catching! ๐
I wanted to wrap up some other half-finished tasks before I started on creating your forum. While I was doing so, I posted about the Dash diet for gout report.
More importantly, for you, I spotted this within the report:
For patients with borderline-high SUA (between 6โ7 mg/dL), it is reasonable to encourage implementation of the DASH diet with the expectation that SUA will be lowered by about 1.29 mg/dL, getting the patient to goal SUA. As a greater benefit was seen in patients with higher levels of SUA at baseline, it is also reasonable to attempt to lower SUA with a DASH-style diet prior to pharmacologic intervention for higher SUA level if the patient is amenable to trying this tactic [my bold]
I’m confident we can work on improving the 1.29 mg/dL. Because, I feel that a gouty version of the DASH diet should be achievable. So, I’m encouraged about the prospects of you succeeding with the Gout Dieter route to Gout Freedom.
Is the patient amenable to trying this tactic?
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