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nobodyParticipant
Wait until you have ascertained how much uric acid there is in your blood to worry about allopurinol.
Ibuprofen and similar drugs reduce inflammation and therefore pain. They are the most straightforward way to quickly stop a gout flare, provided you can tolerate this class of drug.
Colchicine is more complicated to use. It does not provide quick relief but basically makes gouty episodes weaker and shorter. It could also prevent the formation of uric acid crystals but allopurinol is much more effective in that respect anyway. You don’t have to use colchicine but it could allow you to reduce your intake of ibuprofen-type drugs. If a reasonable amount of ibuprofen is enough to make your flares go away, there’s little point in taking colchicine at the same time but you could still take a small amount every day for a few weeks to reduce the likelihood of a serious gout attacks.
So far as I can tell, colchicine is pretty safe as long as you only take small amounts for a limited amount of time. It has obvious side effects which typically prevent people from abusing it. Ibuprofen-type drugs may seem harmless in contrast but it has side effects which often remain unnoticed and prolonged use can potentially be deadly even if you do not exceed the recommended dose.
The matter of keeping the joint mobile is also complicated. But hopefully your gout isn’t bad enough that you have to worry about this.
Finally, inflammation can cause damage but doesn’t do so in most cases (or at least the damage is hardly noticeable). Gout can cause lasting damage separately from inflammation anyway so you should not delay managing the amount of uric acid in your system if you have gout even if you can suppress symptoms with anti-inflammatories.I doubt CBD oil would be competitive with proper anti-inflammatory drugs. Considering how bad gout can get if you allow it to develop, giving such remedies a try may not be as harmless as it seems. But really, I have no idea how effective it is. More importantly, I don’t know what the side-effects might be.
I should also warn you against painkillers more generally and acetaminphen/paracetamol in particular. You can of course take painkillers but you should not use them instead of proper anti-inflammatories or to delay proper treatment.nobodyParticipantHi!
Explain to your doctor that serum uric acid measurements are critical both to the diagnosis and the management of gout. They are cheap may prevent lots of doctor visits, complications from drug side effects and so forth in the long run. And because there is noise in the test results, especially when gout symptoms are suspected, this test should be repeated several times every few weeks or months. If he doesn’t want to listen, get another doctor/insurance and/or complain to the higher ups. If that sounds like too much trouble, just get the blood tests done at your own expense (they shouldn’t be expensive but you might want to shop around for an affordable lab).
It’s not clear at this stage you even have gout. If you do, my wild guess would be that the pain in your toe wasn’t gout at first but ended up triggering gout.
Being careful with your diet until you know how much uric acid there is in your blood may be prudent considering you have gout in the family. If your current iron supplement isn’t helping much with your iron, try heme iron instead (you might possibly be able to quit meat entierly if you take this).Colchicine and indomethacin do not help much with crystals. They are mainly used to deal with acute symptoms and to prevent inflammation from causing lasting damage. It doesn’t sound like you are at risk of lasting damage but you might want to try these drugs if the mobility of your joint remains impaired or if the pain doesn’t go away completely after a while.
Definitely hang on to the pills and don’t travel without them because you’ll need them badly if you get a textbook gout attack. In case you feel unexplained (no injury or something) joint pain getting worse and worse over the course of a few hours and notice swelling and/or redness, my advice is not to delay taking these drugs.nobodyParticipantIn my experience it doesn’t feel the same in the knee (in particular the skin doesn’t become sensitive like the skin around the big toe joint). It could be much worse than what you describe but after a while you can develop more frequent mild symptoms on top of the serious flares.
That said, I also am not convinced that what you have in the knee right now is a gout. It hardly matters anyway because you should get your gout treated if you are getting flares anywhere. If you let gout fester for years, it’s likely going to get worse and it could also cause permanent damage. It’s a slow disease so treating it doesn’t feel urgent but you could end up bitterly regretting having neglected it…nobodyParticipantYes, right now I would say staying on colchicine makes sense because of your symptoms. Obviously if these symptoms persist an extraordinarily long time you will have to change strategy. You may develop a better sense of what symptoms warrant colchicine over time but I think that right now is a good time to be cautious.
Indometacin would be an alternative if you tolerate it better than colchicine (I tolerate colchicine better but we’re all different).I doubt colchicine would do much more than indometacin to prevent crystals from forming. The main difference I think is that a given dose of colchicine remains in the body longer and that taking a small amount every day is generally less dangerous than to take delayed-release indometacin every day. So it makes sense to use colchicine as a preventative. But taking a lot of colchicine (that is, more than you take) every day isn’t recommended and even a small amount could end up causing serious side effects over time. The problem is basically that if your body can live with the amount of colchicine you’re taking, it can also contribute to crystal formation.
Taking “only” 40mg was irresponsible. That was quite a strong dose and not a reasonable initial dose for somebody who has already had trouble with side effects. Hopefully you learned the right lesson, which is to exercise due diligence with drugs and not to ignore reasonable warnings. The right lesson was certainly not to avoid all drugs which lower UA regardless of how they work.
And being afraid of drugs is obviously no reason to avoid getting preliminary tests which would if nothing else give you clues about improving your diet. You could of course improve your diet without getting tests but why do it blind?
Finding a good doctor willing to support you may take you quite some time to begin with so you might as well start now. The day you develop serious problem will be too late. It may be different in your your country but patients with special problems often find it difficult to secure the support of a doctor willing to pursue all the options recommended by the medical guidelines (nevermind non-conventional options) and not just the most common therapies.nobodyParticipantIt sounds like you took way too much febuxostat. Besides the side effects, the main effect of a large initial dose (in a study, people who started with 10mg per days had fewer problems) would indeed be to give you weird joint pain/tenderness/redness as UA deposits are dislodged and move around.
Both allopurinol and febuxostat and xanthine oxidase inhibitors (XOI). Considering the side effects I can understand if you don’t want ever to take a XOI again. But it would be a mistake never to take a UA-lowering drug again. There are compounds which lower UA in common foods such as milk (the amount varies depending on the season, how the animals are fed and so forth) and you never got such reactions from foods, right?
Gout typically gets (much) worse over the years and 0.51 is high enough that there’s little chance to fix it without drugs so it would be reckless to avoid all UA-lowering drugs altogether. So the most obvious next step for you would be to get a UA excretion test in order to guess whether your kidneys could get rid of more UA without forming stones.
The 0.01 change in UA is just noise (you’ll need to get tested many more times) and your diet should obviously be improved further if you’re going to make do with a drug which only moderately reduces UA. This will take time.Yes, colchicine will not give you attacks like UA-lowering drugs.
But in my opinion there is a risk of nursing a low-level attack for a long time if you don’t take enough to kill it off. I don’t know if there is a reason you should avoid large doses but most people can take a good bit more than 0.5mg per day for 1-3 days if need be.
The one week on colchicine, one week off plan doesn’t sound like a great idea. But it would be better than never taking it or taking it all the time.
How about choosing whether to take it or not depending on your symptoms rather than a predetermined schedule? Unfortunately symptoms react pretty slowly to colchicine so this ain’t easy. But you’d learn what usually works and what usually doesn’t with practice.
If you tolerate indomethacin well and as long as your attacks are infrequent, you could just use that and not bother with colchicine.nobodyParticipantGenerally, taking a large dose of anti-inflammatory drugs when the symptoms start is better than taking a smaller dose over a longer period of time. Certainly I would not recommend taking the same dose irrespective of your symptoms.
But it would depend on the type of attack. Especially if you aren’t taking colchicine and prednisone and your uric acid isn’t low enough, you can get attacks which seem to last forever. With that self-sustaining type of attack, you would need to keep taking anti-inflammatory drugs several times per day (unless you have extended-release pills in which case one pill per day might suffice). With the more typical attack type, you should be able to stop taking anti-inflammatories or at least take a lot less pretty quickly. You’ll have to experiment and get a feel for this.
I’m a bit vague about on the exact number of tablets since I don’t know how much of the stuff is in each of yours. And I assume your size would also affect how effective a given dose is.
Different people’s gouty episodes work differently anyway (and you should feel your own typical attacks slowly changing if allopurinol is working).I’m not too worried about you taking indo for a month. My concern is that your doctor is too optimistic and that you might find you are still getting frequent attacks at the end of the month while the anti-inflammatory is slowly becoming less effective and new side-effects become apparent.
There are individual variations which are poorly understood to say the least so maybe your bad patch will be over soon but I think you should also have a plan for a less favorable outcome.A diet might be “very healthy” for most people without being the best for your cholesterol, precisely because the way your body works is a bit odd. I can’t speak for what’s going on in your body obviously but generally, cholesterol is one of the things which react the most dramatically to non-conventional diets.
nobodyParticipantAllopurinol starts working on the first day. Gout is simply a slow disease… you can have it for a long time before you notice it and curing it is likewise very slow regardless of whether you do it with allopurinol or anything else.
Be sure to double-check your uric acid test results though. You can get allopurinol-induced attacks even though the dose is insufficient which would be a real shame.I’m not a big fan of prolonged use of indomethacin-type drugs. These drugs are invaluable if you get hit by a serious attack (indeed you could probably take more than three per day if it was really severe but check with your doc first). The thing is, there are side-effects which can develop over time, some of which are deadly. People often think nothing of it since doctors hand out such drugs routinely and you can get them directly from a pharmacist without checking with a doctor first. But this class of drugs actually kills lots of people every year. They aren’t very dangerous as such but they are frequently abused.
In particular if you’re going to take one pill every day, I would recommend looking at different drugs within this class. The one my rheuma gave me when I started a drug similar to allopurinol is banned in some countries so I’m not going to recommend it but there are many alternatives which are supposed to have fewer side-effects than indomethacin. With any of these drugs, if you take it every day you want to get very regular blood tests which can detect some of the painless side-effects early.
And be sure to check your blood pressure a couple of times when you feel especially “high”.Also see if there’s any way you could adjust your diet in order to allow you to go off this statin for a while. If that could allow you to use colchicine, this could potentially end up being a life saver.
nobodyParticipantHi!
Yes, going back on colchicine for a little while sounds like a good idea. However…
First, it is very important that you make sure the allopurinol dose you are taking is appropriate for you and your lifestyle. The most straightforward way to do that when you are starting allopurinol is to test the amount of uric acid in your blood several times after you start the drug. It is not to late to do this if you haven’t already. You need to get blood tests to make sure your allopurinol use isn’t impairing your liver or kidney function anyway.
Second, you could try a lower colchicine dose to limit its side effects and possibly combine it with indomethacin. You could also try to use colchicine only after symptoms start (but without delay!) instead of every day.
Third, the amount of indomethacin you took may have been insufficient (a small amount would work better in combination with colchicine).
Fourth, there are lots of other drugs similar to indomethacin you could try to see if they give you more acceptable side-effects.
And finally, even with an appropriate allopurinol dose, it may well take more than “a few months” to completely cure your gout considering it sounds like you have been managing the symptoms of gout without addressing uric acid for such a long time. So it’s worth finding ways to deal with gout symptoms which do not involve a daily colchicine dose (though that could be your best option right now).nobodyParticipantI don’t get this anymore but I don’t think it’s weird.
If you’re taking medication to lower your uric acid, it needs to be strong enough and you need to have taken it non-stop for long enough for the flareups to stop. If you wanted to share details about your treatment, I could perhaps give you my opinion.nobodyParticipantIf doctors are treating you like crap, how do you know this is gout? They didn’t try to detect solid uric acid in your body, did they? What do your serum uric acid tests look like?
Assuming it is gout (possibly a dangerous assumptions), the most obvious and cheapest way to put a stop to this crazy flareup considering you are basically healthy would be to combine colchicine and naproxen but you’d need to take strong enough doses. If you can’t get colchicine from Mexico where it ought to be dirt cheap, I guess you could try a dangerously strong naproxen dose if you haven’t tried that already. But make sure you have a PPI on hand if you’re going to go crazy with naproxen! Also be sure to monitor that blood pressure.
And rather than going crazy, see if you could get access to better health care through a charity or something. Enroll the help of anybody who might care for you because if this is gout, it’s a problem that’s likely going to afflict you for years even though it might never be as severe as it’s been these last few months. So you have to think long-term… and taking so much meds that you develop side effects which may prevent you from taking these meds in the future is definitely not what you want! So trying even harder to get colchicine and a good doctor could really pay off in the long run.
Finally, eat a healthy diet (now is not the time to fast or prioritize weight loss!) and make sure you drink plenty of water while avoiding diuretics.nobodyParticipantFinding a good doctor would be the ideal course of action.
A rheuma isn’t a kindey specialist and no responsible doctor would use bullshit excuses to get rid of problem patients and let them fend for themselves.
I must have seen about a dozen doctors over the years. Most were useless and some were dangerous quacks. And I still had to do some of the work myself or I might have ended up without a solution. So don’t give up after the first couple of doctors.Supplements can be even more dangerous than drugs. People promote many quick fixes to the desperate online. The best of these are useless but harmless.
I wouldn’t even dare to recommend a diet based on the very limited information you have shared so far. I have no idea what your current diet looks like or if it changed since the UA tests you shared. Worse, I don’t know if you have health problems requiring a special diet. What if you have a cholesterol problem affecting your tachycardia instance? A diet which would be fine for someone else could easily be more dangerous than febuxostat for you.
If you can’t find a decent doctor, you’ll have to research the issues slowly and methodically. Question everything. Gout isn’t going to kill you anytime soon so you can afford to take your sweet time. Preventing worse kidney problems might be more urgent which is one more reason I’d start by looking into these kidney stones and your kidney function more generally.There’s one bit of advice I think I can give right now because so far as I know it is pretty safe: make sure you drink the generally recommended amount of water and avoid any diuretics (including alcohol) unless a doctor told you it was important you take a diuretic drug (in that case, ask the doctor if there is an alternative).
nobodyParticipantHow long were you on how much allopurinol per day before that 6.0 result?
And are these three measurements are the only ones you’ve got?I assume you have since then stopped taking colchicine. Side effects can become serious over time.
There are no official warnings for not taking drugs but obviously it doesn’t mean failing to treat a disease is necessarily safe.
In particular, I’m concerned about these kidney stones. I’m not knowledgeable about kidney problems but I know some people take allopurinol or febuxostat for kidney stones because uric acid is one of the things which can form stones. Taking too much of these drugs can in principle also result in kidney stones (composed of xanthine). Young people would normally not get kidney stones from uric acid when it tests under 8 but even though your values aren’t very high, possibly the condition of your kidneys might make values as low as yours dangerous. So a diet designed to lower uric acid and help with its excretion could contribute to protecting your kidneys. You would probably also benefit from taking some drug but the simple drug-only approach may not best in your situation. You may also benefit from taking smaller drug doses than most people.
Have you ever seen a doctor knowledgeable about kidney issues and did you discuss uric acid with them? Or have you read the medical reports about your kidneys and the composition of your kidney stones and researched these issues yourself? Obviously there’s a lot more to kidney function than whether or not you have a history of kidney stones…There are a few other drugs than the ones you’re listed as well as other compounds sold as medicine in some countries or simply found in foods which could help with your uric acid problem but you’d have to be careful about their effect on your kidneys in particular.
Sometimes serious drugs are best in spite of their side effects if one uses them carefully because one may only need a very small amount in comparison to less specific or less effective medicines.About febuxostat and your history of tachycardia, there’d be another balance to strike regarding the risks but I think your kidneys ought to be considered first and I lack the knowledge or experience to help you with that. If it turns out your kidneys would benefit from a drug and/or diet which happens to alleviate your uric acid problem as a side effect, there might be no need for you to try febuxostat or allopurinol desensitization.
nobodyParticipantI’m going to answer both your posts here.
I’ve been aware of the issue with cardiovascular deaths linked to febuxostat long before this hoopla. I don’t know exactly what’s going on but I don’t think you should rule out febuxostat simply because it’s got a black box. Your risk factors would need to be considered in light of the available data.
One thing I do know is that febuxostat is often used incorrectly, even by doctors who are suffering from gout themselves. Unfortunately, finding a doctor who understands gout and related issues can be very difficult. Should you manage to find a doctor you trust and who knows what they’re doing, simply ask them what (if anything) you should take.
If on the other hand you want to become your own doctor, the first questions you need to ask are:
-what did you hope to achieve with allopurinol or febuxostat? The main effect of these drugs is to lower the amount of uric acid in your blood. And no one can give you sensible advice about how to achieve that without knowing how much there is in your blood in the first place (or what you’d like that number to be).
-did you get hives because of allopurinol or was that a coincidence? Did you try to take colchicine on its own after these hives went away for instance?nobodyParticipantLet me know if my email didn’t get through (but check your spam folder first).
nobodyParticipantI recall reading that you can get affordable colchicine in the US if the script is done right.
The drug itself isn’t anyone’s IP. Crazy as that might seem, it’s the new usage recommendation you’re supposed to pay for. So if you can show that recommendation isn’t relevant to your medical condition…I would rather get an acquaintance to send me drugs in the mail or cross the nearest border myself to purchase drugs than to order from some random online shop.
Maybe ask people who live in the country you want to buy drugs from? Even if they don’t use colchicine, their opinion will probably be more useful than the opinions of colchicine users living in a different country.nobodyParticipantHi!
The longer you allow your gout to worsen, the harder it will become to tell when attacks stop or indeed whether any problem you are experiencing is due to gout or not.
The textbook attack features 3 main diagnostic signs: severe pain, redness and swelling. There’s also the matter of how the swelling feels when you touch it. But of course an attack deep in the knee joint isn’t as likely to cause a reddening of the skin as a toe joint attack. Likewise, a knee swelling isn’t going to feel like a toe swelling.
Painless swelling could potentially be due to an ongoing attack but it could also be the after-effect of an attack (your “response that requires time to recuperate”), the effect of damage done by an attack (I had a knee which hurt for the longest time after an attack when I performed certain tasks for instance) or even something else entirely. It’s hard enough to tell what’s going on when it’s your own knee so guessing over the Internet…Crystal production doesn’t stop after an attack (not typically anyway).
nobodyParticipantI wonder what were your in-law’s febuxostat dosage and serum uric acid. I’m not aware of any study taking this into account when looking at side-effects in comparison to allopurinol so it’s not clear allopurinol is inherently less dangerous. Certainly febuxostat is often used in a reckless way.
Also, were there any warning signs such as chest pain or strange test results? -
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