nobody

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  • in reply to: Uric acid blood test – what do results mean? #3435
    nobody
    Participant


    Cost/benefit of Uric Acid lab tests

    Keith wrote in another thread:
    “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.”

    I have >20 years experience with getting my UA tested.

    I’m billed close to 60£ for each basic blood test if no doctor is involved. Tests can naturally cost a lot more depending on what is tested but a bigger problem is that doctors are typically involved which can easily double or triple the cost of a basic test.
    I don’t want to write an essay about the issues involved in regulating for-profit health care but suffice it to say there are perverse incentives and many things are made more complicated and costly than they should be. For all the issues with NHS-type setups, they do keep costs down.

    As to my tests results being all over the place, we’ve discussed this in several other threads.
    Briefly, I’ve only had one crazy result when I was at the ER for something other than arthritis (though possibly related to UA) and I’m pretty sure that was simply a case of someone messing up a unit conversion (dividing the result by 10 yields a reasonable value).
    But even disregarding tests carried out at the hospital, the standard deviation is still around 16% of the mean. Which is to say I’ve seen my share of odd results and surprisingly large variations. For instance, in a recent threads Keith talked about a UA test during an attack hypothetically being 10 umol/l off. But that’s peanuts. As I stated in that thread, I’ve had my results dropping >100 umol/l between the onset of an attack and its aftermath.
    That said, trends over many tests and several years do make sense in relationship to my symptoms, my diet and so forth. But combining that with the cost of individual tests here, getting a workable picture of what’s going on with one’s UA can be quite expensive indeed.
    One possible contributing factor to noise in my test results is that professionals often have a hard time drawing my blood. It may have been a coincidence but I got some of my lowest UA test results when my blood was drawn at an unusual location. While professionals have nevertheless always taken the numbers at face value, my rheuma doesn’t value UA tests as much as some other doctors.

    in reply to: Continuous uric acid monitoring #3422
    nobody
    Participant

    Hello,

    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.

    in reply to: Joint stiffness with Allopurinol #3400
    nobody
    Participant

    Assuming it’s even evidence-based, this 15% is only an average and only looks at half of the isse because food also affect how your body excretes UA.
    My UA readings dropped by more than 15% after tweaking my diet and drinking habits (without trying very hard and without losing much weight). I had already eliminated organ meats and such before that >15% drop.

    in reply to: New Sufferer saying hello to Gout #3350
    nobody
    Participant

    Colchicine did give me itchy eyes a few times after starting the pills but not an actual rash. That went away after a while even though I was continuing to take the pills.
    Another thing: it’s sometimes recommended that people on colchicine be careful not to touch their eyes with dirty hands and such because of the way the drug hampers your immune system.
    If your rash gets worse, consider not taking colchicine anymore until you’ve reported that to your doctor. The drug remains in your system a while so some side effects may not go away immediately.

    Colchicine often gives people diarrhea, especially at higher doses. I’ve experienced that but it seems others also got stomach pains and such. Stomach pain is something I got with Ibuprofen instead.

    I don’t think 1600mg Ibuprofen per day is a very high dose but I’d say it’s still more dangerous than 1.0mg of colchicine a day (but everyone is different).
    Ibuprofen can also cause increasing damage over time. Some people are more sensitive than others so I think you ought to get blood tests for that if it’s the first time you’re taking that much every day for weeks on end. The same goes for Naproxen.

    If walking causes foot pain, I personally recommend finding another way to exercise or simply to get a hot shower because you need to get your heart pumping and your blood flowing a bit. Some people also get hot foot baths to make their blood flow in the foot specifically.
    If you can’t walk much, I think it would also be wise to carefully make your foot move while you’re lying down. It doesn’t matter much if you’re only hurting a few days but not making your foot move and bend in every direction for weeks on end can cause damage which won’t heal fast.

    With about 1.0mg of colchicine a day, you might succeed in getting rid of gout symptoms completely within 2-4 days. Some people use more for a limited time but I’d recommend trying a moderate dose first.
    If your foot has been painful for weeks though, that may have caused damage that won’t heal that fast no matter how thoroughly you get rid of gout symptoms. Gout can also be triggered by mechanical damage which might initially be masked by gout.

    in reply to: New Sufferer saying hello to Gout #3348
    nobody
    Participant

    Hi!
    Allopurinol is prescribed in cases when lab test come back at around 0.4. It’s just that if your UA is kind of borderline doctors may work harder to make sure your symtoms are really gout before prescribing it.

    The way you talk about colchicine, you’re taking it as a kind of painkiller. But it acts slowly and prevents attacks from coming back. It’s better to take it before you start really hurting.
    If you’re feeling better but your symptoms aren’t completely gone and assuming you did not experience serious side-effects from your last colchicine pill, I’d recommend continuing to take a little for at least a couple of days. You didn’t say how much colchicine there is in your pills and I’m not your doctor so I can’t tell you how much you should take exactly but pills taken during the night ought to be effective for at least part of the following day.

    in reply to: First Gout Attack – Is Colchicine or Naproxen best? #3304
    nobody
    Participant

    I have no idea what might be causing someone else’s swelling. Flareups can be triggered by mechanical damage and can also cause lasting damage. And some people seem to get harmless swelling easily. But I think it’s a possibility that it’s still inflammation (by which I mean the immune system doing its thing but I may be misusing medical words).
    My experience with arthritis has been that swelling at rest is a sign I’m out of the woods yet. Ways to deal with this would include drugs that hamper the immune system such as topical corticosteroids or colchicine. Patience works too but if you have a physical job waiting for you…
    And as you have seen on this forum, everyone’s symptoms seem to work a bit differently. And the way they work changes over time. So it’s a bit of a guessing game.

    in reply to: First Gout Attack – Is Colchicine or Naproxen best? #3301
    nobody
    Participant

    It’s good you’re able to swim but if you’re still taking Naproxen and you’re not used to taking anti-inflammatories for so long, it might be prudent to get a blood test done quickly. You need to get your uric acid tested anyway so you might as well get tested for signs of stress caused by prolonged used of Naproxen.

    500 micrograms of colchicine ain’t much. That dose may be somewhat useful as a prophylactic but I think you’d need more than that to effectively put the brakes a flareup. If you’re smaller than me, such a low dose may be moderately effective but I’d still inquire about upping the dose. Maybe you have a condition which would make a regular dose of colchicine bad for you but some of us have taken a lot more for a few days without experiencing serious side-effects.
    I have no experience with Naproxen but I guess you couldn’t safely take much more than 1000mg a day. Some people may be able to tolerate a bit more though.
    Even if you’re feeling better, it’s best to inquire about higher doses or different drugs in order to be prepared in case you get hit by another flareup in the future. You wouldn’t want it to last that long!

    In my opinion, a little residual pain is OK but you should find a way to suppress the swelling in case it’s caused by ongoing low-grade inflammation because until that’s resolved, your system may remain primed to go back into full flareup mode quite quickly.

    in reply to: Gout Attack Severity and Duration with Epsom Salt #3158
    nobody
    Participant
    in reply to: First Gout Attack – Is Colchicine or Naproxen best? #3157
    nobody
    Participant

    Assuming there is no injury or other problem besides gout, the pain and sewlling should have abated quicker. There are special cases where little can be done but you haven’t said anything which would suggest that you are one such case.
    Could you state how much colchicine and naproxen you have been instructed to take? Not taking enough will of course not result in the ideal outcome (your weight might be relevant). Have you been told you shouldn’t take both drugs simultaneously? Have you had an opportunity to discuss higher doses or other drugs with your doctor(s) since you noticed that the drugs you were taking weren’t as effective as one could hope?
    Rather than soaking your whole body in fairly nasty drugs, there is also the option of injecting (or infiltrating less invasively) drugs exactly where your symptoms are.

    Other than drugs, my personal opinion is that resting the affected joint is best. Raising it above your heart should also reduce swelling. But at the same time I think occasionally stimulating bloodflow helps. Bathing the affected joint in hot water is generally recommended but getting your heart pumping by bathing/showering or by exercising (in a way that lets the affected joint rest fully) is in my opinion better.
    Finding a way to physically support the affected joint may be helpful because your muscles work unconsciouly in many positions. What they use in hospitals for feet is nice for instance but overkill. Psychological relaxation is also helpful (you may want to try something like vipassana if you don’t have favorite methods).
    Drinking lots of water is a good idea but I don’t know about drinking lots of coffee. Coffee isn’t bad for gout in the long run, mind you. It’s just something I wouldn’t overdo when taking largish doses of unfamiliar drugs.
    My opinion is that you should also avoid prolonged exposure to cold and if necessary wrap the affected joint delicately to keep it warm.

    in reply to: Gout Attack Severity and Duration with Epsom Salt #3019
    nobody
    Participant

    I think you have reason to hope that your attack will soon be over but yes, I’ve had symptoms lasting way too long. But after a while it becomes difficult to tell the ebb of such an attack from the symptoms that might only due to the damage it has caused, especially many years after the fact and without the help of notes. So I hope you’ll excuse me if I don’t give you a straightforward answer.

    My experience hasn’t been that test results during an attack are all that strange compared to regular tests results. But then my test results have often varied quite a bit for no obvious reason.
    For instance, between an test right at the onset of an attack and a followup test (less than 2 week afterwards), the reported value dropped by little more than 100 umol/l which is not much more than random drops I’ve seen over longer intervals (without the help of medication or major changes in weight or diet). I’ve also had a test done in the course of one of these long attacks actually coming back a good bit lower than a test done as I was recovering from it.
    Again, the issue is: what would you do with a test result? If you’re going to compare it with the previous test to decide whether to discard it as an outlier or not, that’s not going to provide much new information and you might as well assume your UA is more or less the same as it was the last time you were tested.
    I think the value of UA testing can easily be overrated and that most of the value lies in robust trends, not in single tests.

    Finally, I am not taking allopurinol.
    But you may nevertheless be interested to know that I’ve never had one of these single-joint unending attacks since I lowered my median UA test under 400 umol/l. You lowered your UA quite a bit more brutally than I did which is probably best in the long run but I guess increases your risk of experiencing a serious attack, at least if that brutal drop doesn’t also bring your UA well into the safe zone under 300.

    in reply to: Gout Attack Severity and Duration with Epsom Salt #3015
    nobody
    Participant

    “Is it something I can use whilst in a attack or is it something I can only use when the feeling of an attack is coming?”
    Methylprednisone might be a better choice when dealing with a fully-developped attack.
    The problem with taking colchicine whilst in a attack is that you might have to take more pills and that you likely won’t get quick relief anyway. So you ought to take it early but taking it late sure beats having an attack which doesn’t end.

    “You also mention your attacks can last longer but are those long attacks you get part of the same chain of days or are they spread across weeks?”
    I haven’t had one of these for many years but they were like you said: “the pain gets better some days and worse other days”. To be clear: one joint affected by symptoms varying in severity but never completely going away.

    in reply to: Crippled by Gout! Will Allopurinol Help? #3013
    nobody
    Participant

    So you’re taking nothing for your symptoms (allopurinol doesn’t count)? Ouch! Did colchicine not work? In that case, there are other options.

    If you can’t handle 300mgs (or more) and test after test shows your uric acid remaining higher than your target, I’d ask about switching to another UA-reducing drug (assuming your doctor doesn’t broach the subject first).
    And while you’re still figuring things out, consider getting tested more often if you can afford it. Necessary changes might be made quicker with more information.

    in reply to: Gout Attack Severity and Duration with Epsom Salt #3012
    nobody
    Participant

    In my mind, avoiding this situation is what colchicine is for. I never used (methyl)prednisone pills so for all I know that works as well or better. But the problem I had with NSAIDs is that they would bring welcome relief but not completely stop the attack or whatever it was.
    If you count ‘the pain gets better some days and worse other days’ as one attack, then I’ve had attacks lasting a good bit more than 12 days, never knowning when I would be able to walk without crutches. And the time required for the joint to recover fully after that? Don’t get me started. I can’t prove it was gout but no one ever found another cause and it’s not because no one looked.
    Colchicine may not provide immediate relief but my experience has been that if you take enough (which may be more than is recommended nowadays in your country) and wait, not only does the pain slowly go away but the joint goes on to recover fully within days.
    Now this is only anectdotal evidence. Maybe I just happend to start using colchicine after I had already worked through enough of the underlying problem by improving my diet or something and that’s why my outcomes improved. Possibly NSAIDs were preventing natural healing and I only had to stop relying on them. What do I know?

    While prolonged use of NSAIDs is not recommended, what ‘prolonged’ means for you and for me might be very different things. If you’re still experiencing no side-effects after 10 days and a blood test doesn’t raise a red flag such as liver markers going crazy, I don’t see why you couldn’t use them longer. You’re probably addressing the underlying cause with allopurinol so it’s not like you’re going to make a habit of taking them every day.
    I have abused NSAIDs in the past but the reason I say so is that there were warning signs. If you do not get any I would take that to mean you can handle the stuff. But I’m no doctor.

    As to UA tests, sure you can get one during an attack. The issue is: whatever for? Whether or not the result ends up being an outlier, it’s not going to inform your allopurinol dosage, is it? Whatever your doctor’s opinion about how skewed the data might be, would it be a good time to change your dose?
    Extra data is always worth having of course. If you’re going to have blood drawn anyway, by all means get your UA checked while you’re at it.

    in reply to: First Gout Attack #2982
    nobody
    Participant

    re: #2980

    20 1.0mg colchicine pills costs less than $7 here. That’s like 5 seconds worth of a doctor’s time per pill.

    These blood tests under 6 were basically flukes. I still had symptoms and my UA tests went back up after a while.
    My take away: don’t trust one test. You need a bunch of tests to build a decent picture. But in order to have a bunch, you need to start at one…

    in reply to: First Gout Attack #2977
    nobody
    Participant

    Patrick,
    Much of what you wrote is I think correct but…
    There are doctors who use colchicine as a diagnosis tool in some cases. It’s much cheaper and easier than arranging an ultrasound and joint fluid test with a skilled hand.
    And there also are doctors who discount the results of tests done on blood drawn during an attack.
    I wish diagnosis was as simple as a blood test. I have had several tests coming back well under 6 without the benefit of UA reducing drugs. Do you think that means I don’t have gout?

    in reply to: First Gout Attack #2972
    nobody
    Participant

    I hope your swelling and pain have improved but colchicine works best when taken when the symptoms start. So if you get other attacks, you can reasonably hope they won’t be so bad now that you have colchicine on hand.
    If colchicine is taken later, much patience and possibly a higher dose may be required for symptoms to subside. Possibly your doctor wants to know what colchicine alone does and doesn’t do for you but if you can’t bear it anymore, be aware that you could probably get faster relief from other drugs.
    If you manage to beat this attack with colchicine alone, I’m no doctor but I recommend tapering off slowly rather than quitting it as soon as you feel better.

    in reply to: Crippled by Gout! Will Allopurinol Help? #2971
    nobody
    Participant

    Hi,
    I’m not an expert but here goes…

    When people start allopurinol, they are often given at least one other drugs to prevent or deal with symptoms such as pain in the oddest of joints. You din’t say what else you’re taking.
    If you’re taking something else since January, it might account for side-effects such as digestive disturbances. If not, there are alternatives to allopurniol you might discuss with your doctors.
    If on the other hand you have yet to try various drugs at various doses to deal with your symptoms, it might be worth discussing that with your doctors. How your symptoms react to the drugs might provide clues as to what’s causing them.

    Unfortunately, while I guess it makes sense to address gout first, you may have other conditions as well as damage caused by untreated gout contributing to your troubles.
    If you can’t bear your current situation, it might be worth ruling out other conditions or looking at different ways to alleviate your symptoms even at this early stage. It’s up to your doctors and your wallet really. Maybe they’ve already tested you for other conditions and so forth.

    Finally, your allopurinol dose may be suboptimal and that may explain why your joint pains aren’t improving. Ideally, you should be doing regular blood tests and your dose ought to be adjusted based on the results.

Viewing 17 posts - 664 through 680 (of 696 total)