Forum Replies Created
-
Posts
-
Occasionally we write with passion in forums and things get slightly out of hand. My best advice is to change any negatives into positives and find ways to move forward with better treatment.
Anyway, I am mostly here to call out to Eide ( @karl-aksel-eide ) about peer review. Because I’m passionate about research and I would like to discuss this more. But not on this topic. So I hope you can start a new topic about any aspect of your research that you feel like discussing. Then I can also address the issues that you have raised here.
Very interesting Eide. So thanks and I hope we can discuss gout research further. I can also explain my personal views on why I feel this particular study is potentially misleading. Of course, nobody may have different reasons. But I respect the tremendous effort he devotes to helping gout sufferers on this forum.
I obviously need a medical professional who knows more.
It saddens me to see such poor quality of care in this day and age. Because professional guidance has been available to front line doctors for at least 10 years. But far too many of them simply ignore best practice.
For example, the starting dose of allopurinol must be 50 – 100 mg. Then increased every 2 to 6 weeks until uric acid is safe. “Safe” is debatable but without any debate, gout patients are lost.
There are other apparent mistakes in your treatment. So I guess my question is “can you find a rheumatologist who has gout experience and who has adapted treatment procedures to reflect the current guidance?”
If not, we’ll have to train whatever doctors you are stuck with.
Somewhere in my efforts to understand purine metabolism, I got it into my head that some purine bases were irrelevant. In fact, I cocked up. Even worse, I realized this some time ago, but never finished my plan to revise all my purine content.
So I plan to include all purine bases and total purines for everything. Then people can discuss that with their doctors or whoever else might show an interest.
Anyway, back to Zachery’s question about my eggs and milk line. The full quotation is from a paragraph in that Japanese report that I failed to reference [hangs head in shame]
Thus, foods containing small amounts of total purine and those containing mainly adenine and guanine are considered to be beneficial for hyperuricemic patients and those with gout. These include eggs, dairy food, cereals, beans, vegetables, mushrooms, and soybean products. Eggs and dairy products contain almost zero purine. In particular, dairy products are recommended dietary foods for patients with gout. Milk proteins such as casein also reduce uric acid serum concentrations by increasing the excretion of uric acid. A population-based case-control study showed that calcium was inversely associated with plasma urate concentration. The risk of gout has been shown to be low in individuals who consume plenty of dairy products. Indeed, US and British guidelines for gout recommend the consumption of these foods.
From: Kaneko, Kiyoko, Yasuo Aoyagi, Tomoko Fukuuchi, Katsunori Inazawa, and Noriko Yamaoka. “Total purine and purine base content of common foodstuffs for facilitating nutritional therapy for gout and hyperuricemia.” Biological and Pharmaceutical Bulletin (2014): b13-00967.
Sorry Zachary – your post got held due to some poor forum settings that I’m investigating.
I need to do a proper investigation of my piss-poor “Eggs and milk are zero purine foods” statement. So please bear with me.
In the meantime, I’d like to say that purine management through diet is difficult. Because you have to account for how food affects uric acid inputs and outputs. Also, how your internally generated uric acid from cell metabolism affects this.
It’s not impossible, but I’d say you absolutely must have uric acid excretion tests as well as blood tests. The frequency of those tests is just one item in a long list of decisions to be made by you and your professional advisors.
So I guess my first question is, which health professionals are you working with? I ask because that gives me some context when framing my future replies.
Sorry Claudiu – your post was temporarily inaccessible. I’ve fixed that now. Other forum users might have to clear their browser cache to see the corrected version. (Ctrl+Shift+Backspace for my ‘Clear Browsing Data’. But your browser might have a different way.)
I’ve started to look into your polypharmacy. I’ll also prepare something on why “lots of salads” isn’t a good gout foundation diet (that’s not to say that salads are wrong – just that the phrase is inadequate for healthy eating patterns)
While I’m doing that, I hope you can answer my burning question – why no uric acid blood test results???
Great points, nobody.
First, I included all my responses so that people can see what the survey is about before going to complete it. But I agree the purines question is important. Though I also have a strong interest in knowing what features people might like to see in an app.
I can see now that I only gave negatives for the purine responses. I’d love to be able to say that was a deliberate ploy to encourage you to post your views. But I don’t have that much foresight. However, I agree that it is better to work with the knowledge we have. Also, a purine-intake tracking app might encourage the availability of more purine data. As well as insights into better correlations between different types of purine intake and net uric acid levels.
The Japanese gout guidelines include recommendations for purine intake (from memory – I’ll add the references later). In that context, a purine monitoring app to support medical targets would be very useful. But I’ve never heard of American or British doctors setting purine intake targets.
I hope other readers will post their doctor’s remarks and advice on purine consumption. As well as any other comments they have about this survey.
Here’s my survey responses [With my additional notes about my choice of options]:
1. How old are you?
55-64
2. Which country do you live in?
UK
3. How recently were you diagnosed with Gout?
11+ years
4. How confident are you about the causes of a gout attack?
Very confident, I know what my cause is.
5. How often do you experience a gout attack which requires medicine treatment?
2 times or less than a year [I never get gout attacks because my uric acid is controlled using daily allopurinol with annual blood test]
6. Do you track your purine intake?
If yes, how do you track your purine intake?
If not, why not?No
a) Scientists cannot accurately determine what percentage of different purines in food get converted to uric acid.
b) Uric acid is generated from purines in our own flesh as well as what we eat.
c) Compounds in foods can influence how much uric acid we excrete.
d) Compounds in foods can influence how much uric acid we generate.
All these factors directly influence the level of uric acid in the blood. Other diet related factors might also indirectly affect uric acid level and the symptoms of gout.7. How much time a day are you willing to spend on tracking your daily purine intake with an app?
I don’t want to track my purine intake.
8. Are you willing to use a smartphone application to help monitor your gout symptoms and treatment?
Yes
9. Which of the following features for gout monitoring would you find the most useful in a smartphone application? Please order from most to least useful
[The survey presents a list of 9 features that can be dragged or clicked into different positions.]
1 Reminders for taking medications, scheduling appointments, doing exercises.
2 Personalised joint friendly exercises guide.
3 Symptoms and other data tracking(body weight, purine intake, meals, water consumptions…)
4 Ability to share data with your doctor to influence treatment.
5 A discussion forum to connect with other gout patients and GP.
6 Up to date news related to gout.
7 Personalised low purine dietary recommendations.
8 Purine information food database.
9 Activity tracking by connecting to external sources e.g. apple health, fitbit, strava10. Are there any other features not listed which you feel useful?
No
11. How much money are you willing to spend on a gout self-managing app as a one-off payment?
I don’t want to spend any money on it.
12. Are you currently using an app to track your gout condition?
No
How is the 300 mg dose of allopurinol working for your uric acid? I hope you can post your last test result details. Then we can discuss if your dose is correct. Because this forum is here to support gout sufferers and help them ask the right questions when they consult health professionals.
To clarify, no forum can ever advise you about specific medications. Because it’s immoral to give treatment advice without access to test results and medical history. Only qualified medical professionals can do that.
For the moment, I’m going to assume that your dose is wrong. Simply because it is wrong for most gout patients. So book an immediate appointment to get your blood tested for uric acid. As usual, you should insist on liver function and kidney function tests along with the uric acid test. Though any competent doctor would order those tests anyway.
When booking that blood test, you should mention that you want to consult about aspirin. I’ve no idea if that is important for testing purposes. But best to plan ahead. Then once your doctor has all the relevant test results, you can continue with step 6 of your Gout Patient Plan.
Please note that aspirin for heart disease is outside the scope of GoutPal Plans. As are all gout comorbidities. So that is another reason for raising it with your doctor at the first opportunity. Because it seems logical to me that you discuss aspirin treatment in the same consultation as uric acid treatment. But you must confirm that with your doctor immediately.
Hi Jimbo,
I was going to lead with “elevated Uric Acid Levels” but I see nobody has mentioned the lack of a number. So I’ll save that sarcasm for another day.
Before I get to your questions, a few words on “I have never felt this kind of pain”. You might have done if you ever had a really bad case of flu or similar.
I say this because it’s important to realize that gout pain is your brain interpreting signals from your immune system. Those signals are an alert that your natural defenses are in trouble. White blood cells are fighting microscopic uric acid crystals and you have a shitstorm. So you’re right – gout pain is absolutely not like the types of physical pain you describe. But how do you deal with that shitstorm?Nuke it with steroids? I wouldn’t.
Tease it with dietary tantrums? I wouldn’t.1.) How long is this crap going to last?
“this crap” might mean your:
a)- current gout attack. See How Long Does a Gout Attack Last? That will probably prompt some more specific questions from you. But also see 2.)
AND/OR
b)- ongoing battle with elevated uric acid. See How Long Does Gout Last? It’s Your Call. It really is up to you how long gout lasts. But a good plan that both you and your doctor buy into will make it as fast as possible.2.) Any other ideas on Pain Relief other than what I described above?
I hate steroids! They knock out your bodies natural inflammation fighters. But everyone should have the discussion with their doctor and make up their own mind.
I recommend a combination of up to 3 meds Relief From Stubborn Gout Pain. Any or all of:
a) Block inflammation. Colchicine stops inflammation getting worse but does nothing for existing inflammation. Omit this if you hate colchicine. Or ask your doc/pharmacist if there is anything else.
b) Reduce inflammation. I’m a fan of Ibuprofen but you must get gout strength from the doc. For other choices, a pharmacist can often advise as can many hospital ward staff (they’re the experts in stopping grown men crying in pain). Remember Over The Counter is not enough. OTC really means Only Tickles Chronic when it comes to gout pain.
c) Bad inflammation can take a few hours to resolve so backup your anti-inflammatory med with Tylenol or similar. Again, get qualified medical advice on this.3.) Probably a stupid question but when it does seem to get a little bit better during the day, will walking on it bring the pain back well after my walk?
No question is stupid. Look in the Should I Walk with Gout discussions and you will see every opinion. I can tell you what works for me but there is no definitive answer.4.) Any things that this group has found that works to shorten the flare up?
I was so good at shortening my flare-ups that I neglected to address the underlying issue of uric acid above 6 mg/dL (personally I don’t like to be over 5 mg/dL). As a result, I have knee and feet joint erosion that limits my mobility. Please trust me when I say you should stop worrying about that (answer 2 gets it down to minutes anyway). Instead, plan a strategy to get uric acid safe so that gout never returns.That’s more than enough for now. I’ll add more thoughts depending on responses.
Orininally one of my doctors told me to take alloprunlol but when I saw a senior dr at the surgery he advised me against it because of side effects. His advice was diet control.
All those years ago, gout management was even more of a lottery than it is today. Then, most doctors had no clue about how to safely manage gout. Also, everyone was less aware of the progressive nature of gout that leads to increased joint pain, joint damage, and organ damage.
Now, all those years of untreated excess uric acid are taking their toll. So you are experiencing the common symptoms of unmanaged gout. The answer lies in getting uric acid under control. So get it tested then we can discuss a plan to get you safe treatment.
I don’t want to say at this point if allopurinol or diet is the best way for you. Because that depends on your uric acid test results. Also on a full dietary assessment if you think diet changes are a feasible option.
After delays, I’ve posted the Original Poster’s (OP) LinkedIn response above. Now, I intend to:
– Address the forum posting difficulty.
– Investigate Terminalia bellerica which I can see has more than one relevant uric acid study.
– Respond direct to the OP on LinkedIn.
– Reply here with relevant updates.Hi Sandosa,
You haven’t given me much information to go on really. For instance:
– Who told you to try Apple Cider Vinegar (ACV) for gout?
– Do you think it might help with gout pain relief, or with uric acid control?Anyway my short answer to How much apple cider vinegar should I drink for gout is:
“Less than one tablespoon per day.”
I feel for you Malik. But you should know that there is a simple answer – adequate pain control. Which is why I recommend that people don’t start uric acid treatment until they have confidence in effective pain management.
Professional guidelines take on this is to prescribe colchicine as a preventative for at least the first six months of allopurinol treatment. Now, I don’t necessarily agree with that in all cases. But it’s better than nothing.
Key to getting free from this gout pain hell is to understand you have a mix of 3 tools:
1. Colchicine to stop inflammation getting worse. But it does nothing to reduce existing inflammation. Though that inflammation will subside naturally, it is usually better to use one or both of the other tools in support.
2. Anti-Inflammatory drug to reduce inflammation. Due to the way our pain signaling works, this usually stops pain as well. Everyone is different but some people might still have levels of discomfort that they cannot tolerate. So …
3. Pain blocking analgesics that are compatible with whichever anti-inflammatory you take.Every gout sufferer needs to work out a plan with their doctor for their own pain management routines. Because you can vary the approach to match the intensity of pain and swelling. But this is something you must discuss with a qualified health professional.
I’ve commented several times before about my personal choice of health professional – hospital ward nurses. Because they are practicing pain management every day with a wide range of patients. Depending on the experience of your doctor, my next choice would be a pharmacist or doctor. Note that gout needs prescription strength pain relief. So your doctor has to get involved at some point. Therefore, your best first option is to discuss a proper gout pain strategy with your doctor. There are lots of options. Especially because some drugs will act as more than one tool. But your plan must include strategies for inflammation control, inflammation reduction, and residual pain blocking.
Getting back on to the topic of allopurinol side effects. There are standard medical procedures for dealing with elevated liver enzymes during allopurinol treatment. So you should discuss these with your doctor at the same time.
If your doctor seems clueless about how to manage uric acid treatment properly, then your rheumatologist should have the answers. In any case, it’s much easier to have those discussions when you are confident in gout pain management.
but it’s my choice. We’re all different
I think that neatly sums up my opinions on both allopurinol and Atorvastatin.
I remember an interesting discussion about statins in my 50s. It was with the one doctor who understood gout. Now that’s not relevant to the statin discussion but it made me listen to him more than other doctors who didn’t even understand what statistical normal distribution is (don’t get me started!).
His explanation was that during his time in practice he’d seen a substantial drop in heart disease. He put that down to decrease in smoking and increase in statins. Though he readily admitted this as a belief rather than a scientific study result. I interpreted his advice as part of the risk-reward balance that all doctors have to make decisions on every day. And as I could see no risks to taking statins, I take them.
Similarly, with allopurinol which I’ve studied in more detail. I’m aware that some moronic doctors will start with a very risky 300 mg dose. Fortunately, that’s never happened to me. Anyway, I cannot find any studies showing adverse effects when allopurinol is prescribed according to modern protocols. Also, I’m more aware than most people of the terrible damage that excess uric acid causes. So daily allopurinol is a no-brainer for me.
But if you look back on old forum discussions, you’ll see that it took me many years to realize that.
It’s worth repeating pb’s comment:
but it’s my choice. We’re all different
Hi Malik,
1) Your opening sentences tell me that your primary care doctor knows nothing about gout and how to manage it. But we can educate him. I’m unsure about your rheumatologist because you haven’t described any discussions about treating uric acid. So your first decision is:
Which doctor do you want to work with to develop a proper plan for your gout recovery?2) Then you describe a series of random pain meds that work well for gout when they are taken in a sensible way. But might or might not be useful when taken randomly. So your second choice is:
Carry on randomly or start to learn how gout pain works and how to stop your immune system going into meltdown.3) You’re beginning to approach a solution when you mention one uric acid test that is 6.8 mg/dL. But gout control needs, at the very least, a series of uric acid test results with dates. And a commitment to change things to get those results down to a safe level. So your final decisions (for now) are:
a) What do you consider to be a safe level for uric acid?
b) How to get uric acid safe? Drugs, herbs, diet, or a combination of whatever appeals to you most.For all those decisions, it’s OK to not know the answer right now – we can discuss them in more detail if you need to.
In my opinion, the reason you are feeling “at your wits end” is because everything you described is reactions to events that seems to have very little logic attached. But if you control that situation with a logical plan, recovery is quite easy. Now, I’m happy to share my experiences to help you achieve gout recovery. But I need to know more about what you want. We can start with the three decisions I mentioned. Or we can address other concerns if they are more important to you.
I must say have been drinking lots of water, even when not thirsty, and it has made a difference.
I’m glad you’re feeling better.
Thanks for making me think deeper about water intake and allopurinol. I made a passing reference to it years ago:
The kidneys play a vital role in gout management. Drinking plenty of water helps the kidneys flush uric acid from the body. Even if you take allopurinol to inhibit uric acid production, you still need water. It helps the kidneys get rid of the by-products of allopurinol. All medical or home remedies for gout that reduce uric acid will work better if you drink plenty of water.
But speaking of references, there are 5 sentences of my opinions. Without a single scientific reference to back them up. So I’ll remedy that.
In the meantime, I took a quick look at my allopurinol supply:
- The doctor’s instruction label says “Take with a full glass of water”. No indication of how much. Also, one glass of water a day will not avoid dehydration.
- Instructions in one of my packs says “Take with a little water after meals“. But it goes on to say “Drink plenty of fluids while you are on this medicine”. The manufacturer’s bold, so they must recognize the importance of hydration when taking allopurinol.
- The other pack makes no reference to water or hydration.
I wonder if discomfort eased by hydration is a general thing. Or if it’s gout-specific?
Hey pb ( @p-mb )I’m sorry that I missed your post and hope you are still reading this forum.
Triggers for gout flares are very complicated. But absolutely impossible to guess without knowing your blood uric acid level at the time of the flare. Because flares can be caused by new crystals forming (bad). Or by old crystals dissolving (good). Search ‘Allopurinol Medication: Why It Hurts To Get Rid Of Gout’ using the search box near the top of each page.
Anyway, the important thing is to get uric acid safe. Because then you can never have a gout flare once old uric acid deposits have dissolved.
Importantly, I started checking for links between statins and gout. Now I haven’t yet found links between statins and uric acid. But the revelation that statins improve mortality for gout sufferers is great news.
If anyone wants me to summarize more research on statins and gout (and/or uric acid), please let me know.