April 26, 2017 at 6:19 pm #3420
I’m a Ph.D researcher looking to help people with gout monitor their uric acid levels. One of the things that my team is looking at is continuous monitoring of uric acid levels non-invasively.
I’m looking to get in touch with some of you, through this forum or via direct message, to really hear what would make your lives better in terms of monitoring your uric acid levels. I have three questions:
1. How would continuous monitoring of uric acid via a non-invasive method (for instance, a 2x daily measurement) interest you?
2. How have gout flare-ups or other gout symptoms affected your life?
3. If you could get warning that a flare-up was imminent, what would that do for you?
April 26, 2017 at 7:36 pm #3422
nobodyParticipantŦallars: Ŧ 575.58
1. Lab tests are expensive here and in my case they aren’t very useful because the results tend to be all over the place.
Continuous monitoring (assuming the results weren’t super-noisy or plain wrong) might help me understand not just what makes my UA level go up and down but what factors make the biggest difference. Knowing for a fact that changing some of my habits makes a significant difference would be a great motivator.
I wouldn’t even mind invasive monitoring if I trusted the reliability of the measurements. A cheap and non-invasive monitoring method would require a lot less trust for me to bother giving it a try.
2. Chronic arthritis is effectively a disability.
3. If someone claimed some kind of monitoring could predict flare-ups, I’d be skeptical. But if it actually worked, it would be awesome.
For one thing, I’d know when to take colchicine. While it is a pretty nasty drug, it’s in my experience less harmful than the alternatives as long as you don’t take it for weeks on end. Trouble is, it’s more effective when you take it as a prophylactic instead of taking it only when symptoms show up. Advance warning would hopefully allow us to take the drug early enough to make it as effective as it can be while giving our bodies a break when colchicine isn’t needed.
April 27, 2017 at 4:39 am #3434
Not for this thread, but I’d be interested to read about your experience with uric acid test. Because, I’m intrigued by your cost issues. But, more importantly by “results tend to be all over the place.”
Anyway, that’s up to you. Because, I’ve no wish to intrude. But, more importantly, I agree with your skepticism on point 3. Over the past few years, I’ve read lots of new revelations about our understanding of triggers for gout flares. Also, I don’t recall any research that links gout flare incidence to changing blood uric acid levels.
Now, it’s clear that flares cannot happen without a history of excess uric acid. By which I mean uric acid levels high enough for crystals to form. Also, uric acid levels in the blood might be a factor in triggering gout attacks. But, the latest research that I’m studying suggests that a bigger flare factor is related to Free Fatty Acids (FFAs).
On the bright side, boffins might confirm the FFA connection. Then, maybe, measure FFAs together with uric acid, non-invasively. So, given the if, buts, and maybes, we might have an effective solution.
But, I have to conclude with another note of skepticism. The biggest tragedy of gout management is that frontline healthcare professionals do not follow professional rheumatology guidelines. So, would better uric acid monitoring necessarily lead to better gout management?
April 26, 2017 at 8:25 pm #3423
Thank you for this! Your comments are really helpful! If anyone else would also like to comment, the more information I have the better to make decisions about what would best help patients.
April 27, 2017 at 3:07 am #3431
This is exciting! Because, I love to hear about new ways to help gout sufferers. Of course, I’d love to know more about the processes you are researching. Therefore, I invite you to give me a brief overview that I can use as piece on my main website. Then, I’m convinced that will attract many more answers to your 3 questions. Pending that, here’s my answers:
1. It would interest me to the point of obsession. But, to put that in context, I’m obsessed with most practical gout research. More importantly, I feel that gout sufferers are very badly served with current uric acid test facilities and interpretation of results. So, anything that can improve that is at least as revolutionary as Uloric to gout sufferers. With more knowledge, I might even claim it’s as revolutionary as DECT for uric acid deposits monitoring. Can you imagine a world where we can get non-invasive measurement of total uric acid burden in crystal and dissolved form? I’m so excited I won’t sleep until I find out more! 🙂
2. I’ve suffered excruciating pain. Worse than that, permanent uric acid damage to my joints still restricts my knee mobility despite having gained complete control over my gout.
3. I would take 2 colchicine tablets (1 to 1.2mg depending on tablet size). In the past, I would have done this at the first sign of gout symptoms. So, I would have added a dose of ibuprofen. Then, I would monitor the symptoms and take further pain relief if necessary. If I had access to your early warning system, I would still take the colchicine. But, I would monitor my symptoms, before taking anti-inflammatory or other analgesic relief if necessary.
As ever, if there is anything about my response that needs clarification, please ask.
April 27, 2017 at 9:12 pm #3436
Thank you for your responses!
Just a quick follow up, when you do at home monitoring (say on a daily basis) with current uric acid tests, do you see a correlation between flares and uric acid levels?
Or, if you have had a flare in the past and then you begin to monitor your uric acid daily, does that knowledge of what your levels are help prevent you from getting another flare (or a worse flare)?
April 30, 2017 at 9:15 am #3477
I mentioned earlier: “I invite you to give me a brief overview that I can use as piece on my main website. Then, I’m convinced that will attract many more answers to your 3 questions.”
Now, with 2 extra questions, we have 5 in total. So, I believe that reinforces my idea that a survey on my main gout website will bring more responses. Also, I’m planning a new survey on uric acid test costs. So, those surveys might complement each other.
Of course, it’s entirely up to you. I’m happy either way. 🙂
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