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Hi,
Infections should to be dealt with separately from gout.
Gout is a slow disease which is dealt with by lowering the amount of uric acid in one’s body. How much uric acid is there in your blood (it’s a routine test)?
Infections on the other hand need to be treated seriously and without delay. If your antibiotic isn’t doing its job, you might require a different antibiotic. Or you might have a health condition which complicates healing after surgeries. Either way, you need to see a doctor.Here’s my guesswork: even if you still get attacks, you should notice a trend: on average shorter, less severe and/or less frequent. And you shouldn’t need to wait years to see such a trend clearly (more like 6 months at the outside). To the extent that you also experience less acute symptoms, you should also notice a trend as far as these are concerned. You might have needed to wait years for improvements to become clear if you had only succeeded in lowering your SUA to 400 or so.
That said, just because you’re feeling better doesn’t mean you can’t get a nasty attack out of the blue, especially during the first few months after you start feeling well. There are outliers to any trend. But emergency drugs should resolve such attacks quickly provided you don’t skimp on the doses.I can usually sleep long before 4 AM without difficulty. I just need to stop reading, else I could stay awake through the night. I do sometimes resort to putting something soothing in my stomach though I try not to make a habit of eating sweetened products (or cocoa products, for a different reason).
I realize I have advantages. I’m not the one who used to argue that our situations were similar. ๐
About enjoying life, there have been times when I wanted to die because of my joint troubles. For what it’s worth, after only a few years in “gout hell” my troubles weren’t so bad as to drive me to despair anymore. Maybe I’m a special case, maybe I was suffering from some other disease, whatever. But it looks to me as if lowering one’s SUA into “gout hell” does bring about an improvement, as it should (crystallization is in theory a slow process anyway). Obviously you want more than a mere improvement and you don’t want to wait years so it’s best to lower one’s SUA further down than the edge (as you did).
Now I only need to find some other metabolic tweak to deal with insomnia.As to the following request: “In your opinion and out of curiosity would opting for 340ummol be better then opting for 100mgs of Febux to gain maybe +/-30 ummol less (p.s. Iโm just assuming that UA level saving)?”
Not sure what “saving” means here but if your blood med doesn’t end up lowering your UA and you aren’t experiencing a clear improvement in your symptoms after a few months of sub-350 SUA… then I’d try 100mg/day febux.
Every case is different. I can’t know what risks you’d be facing if you increased your febux dose and I can’t know what benefits you’d get by going from 340 to 310 either. What I do know is that time will tell if 340 isn’t low enough.I’d say the main point of having reliable emergency drugs with you at all times is as you put it, to worry less and enjoy life.
One advantage you have over me is that it looks like you can handle serious NSAID dosage. Yet it seems you aren’t taking full advantage of that bit of good luck.It doesn’t matter when crystals still manage to form (they shouldn’t be forming at 400 either though it’s more complicated in practice).
Dropping SUA under 300 hasn’t been shown to dissolve old UA crystals anywhere as quickly as we’d like. That’s the problem. The same goes for 250 and so forth. The lower, the better but it’s not clear it makes a big difference beyond a certain point.
And as far as I can tell, it looks like that point depends on how bad your gout is (and in particular on where your UA crytals are, which in turn depends on the SUA you used to have among other things). Mainstream European guidelines also suggest such a relationship (or rather that I’m not alone in entertaining such a notion).I don’t quite subscribe to this “gout hell” notion in the first place but for what it’s worth I think it would mostly be a concern when your tests aren’t consistently under 400.
The effectiveness of your “buffer” is also going to depend on your body’s excretion abilities (urine isn’t the only pathway). So possibly my 350 is your 320? Shit’s complicated.
Only the evolution of your symptoms over the years can tell for sure if your SUA target was the right one.Hello,
Be aware that side effects such as your rash (if it is indeed due to allopurinol) may take a few days to go away after discontinuing allopurol.
It’s not really a side effect but discontinuing allopurinol might trigger gout. There are other uric acid drugs you might take instead of allopurinol to avoid this problem.
Good luck!It’s more than just one lucky result, innit?
If you weren’t on a new medication, I would recommend trying 100mg/day.
But since you’re already trying something new, I wouldn’t also change a febuxostat dose which has been stable for some months now. Even if you had no cause to be concerned about side effects, you’re not going to see the effect of this blood medication on your SUA if you also increase your febuxostat dose.There’s little cause to be afraid of “gout hell” at this stage. You’ve already reached the recommended value. It’s not ideal yet and you are of course still at risk of gout but dropping your UA test results under 300 would not magically protect you against gout. You might clean the remaining UA crystals from your system a bit faster with lower SUA among other benefits but I have yet to see any evidence it would make a big difference in your situation. It’s mostly recommended for people who used to have worse gout than us.
What you need most at this stage in my opinion is patience and a powerful set of emergency pills just in case.That 120mg pill also happens to put more money in some people’s pockets. And it nevertheless seems to have been withdrawn from some markets…
I’m sure some people do well on 120mg but you better be careful. Loads more people have taken up to 80mg daily than 120mg, and for longer to boot since they didn’t make pills stronger than 40mg at first.As to your other q., a quick reminder (we already went over this): I first had typical gout symptoms more than 10 years before I was able to take a XOI for long enough that we might call it treatment. I was able to get halfway decent numbers for a while by watching what I ate and drank though.
Way off the mark. 40mg febuxostat is supposedly like 400mg allopurinol… or possibly more like 350mg.
Allopurinol may have done something else to your body than simply inhibiting xanthine oxidase. Or it was a coincidence and your hemo just happened to drop around that time. Either way, your 283 result was probably in no small part due to your hemo situation.re: ffs
Please don’t assume that you’ll need to wait a few years for your symptoms to go away. You didn’t spend anywhere as much time as I did with untreated symptoms. And I was also taking into account the time necessary to become confident that symptoms are gone for good.
I haven’t kept a foot elevated or used pills for symptoms in quite a while (I only keep them around, just in case). It’s really not that bad. Keeping myself “from enjoying certain aspects of life” has long become a habit anyway.As to your “specific question” which isn’t actually a question (hence the smiley?), it comes down to this: could anybody fool you into thinking they were nobody? If not, simply post an email address of your own instead of asking me for the moon. Artful obfuscation will prevent software from harvesting it for spam. There’s no guarantee I’ll see your email as opposed to anybody else’s but I don’t mind sending emails unsafely. Over time, we may come to trust that we indeed have each other’s email.
There’s no technical trick that would allow two nobodies who don’t know each other at all to establish any kind of secure channel over a public forum. Thankfully, we don’t need a secure channel. All we need is patience.If I’m not mistaken, Yorkshire has yet to get international recognition for its football team. Do they even shoot crime procedurals in whatever language people used to speak over there?
Let me be “very cryptic” then: I got some fairly nasty attacks about 3 months after getting my SUA consistently under 300 with febuxostat. Since then, I’ve only experienced minor symptoms.
I’m not sure what symptoms deserve the name “attack”. Certainly it’s been quite some time since I have experienced textbook gout attacks (swelling, redness and pain at rest). On occasion the minor gout-like symptoms can be most annoying (too much swelling to put on my shoes for instance) but that’s nothing in comparison to what I had gotten used to.
The frequency of these annoyances has slowly been decreasing but it’s too early to make definitive claims about the efficacy of ULT in my case. Hopefully by 2020 I’ll feel confident enough to give a useful account of my particular situation and to travel without a set of emergency drugs. In the meantime, best get your timetable from people who have been successful in curing their arthritis.Though I’d much prefer visiting England (or some other British republic), assuming this forum still works by then I’d have no problem throwing you an @ should I cross the Channel for the first time in decades.
Like I said, I’m overdue for a blood test so I have no news about my test results. I wouldn’t be overdue if there was a real concern though.
I haven’t used colchicine in quite some time but in your situation, sure: I’d occasionally take colchicine as a precaution. Obviously there are many causes for foot pain so don’t take it for ANY foot pain. And I wouldn’t necessarily have waited for actual pain to develop. You should be able to guess what odd foot feelings might possibly be related to incoming gout by now.
Like I said, the one thing I used to be paranoid about when I took colchicine was infections. I wouldn’t have taken it as a precaution if I had any kind of bleeding for instance. So colchicine made for a great excuse to avoid flossing.
I’m not sure what you’re asking about the center toes but you can of course get gout on any toe joint, not just the largest where gout is typically very painful. And between the thickest parts of the toe joints, you’ve got stuff which may or may not be technically joint tissue but it’s also gout-prone anyway.I’m surprised you got an excretion test now. I was told you’re supposed to go off UA meds for a while before you can get a useful result.
In any case I don’t think it matters whether your result is “normal”. People with “normal” uric acid are still given allo to cure their gout and I except people with excretion on the weak side of “normal” relative to their SUA would also benefit from excretion boosters.As to the febuxostat dosage mess, profiteering is evidently to blame for it.
The UK has less resources than the US to deal with uncommon drugs. It’s not enough to have a public health system. The people in charge also need to be willing and able to question self-serving information offered by foreigners.I think you should change only one thing at a time. If you just started the blood medication, I’d wait at least until your next blood test to change your febuxostat dose.
I meant that 120mg won’t cure your gout overnight. Getting rid of uric acid deposits will take time regardless.
80mg could do the job. 100mg would probably do a better job. After that, it’s not clear the benefits of a higher dose would outweigh the risks. Keep in mind 80mg is already more than the people who developped the drug are comfortable recommending. Your circumstances required drastic measures but my opinion is that 100mg would be drastic enough. Certainly no evidence to the contrary has as of yet been put forth.Crystals shouldn’t form at 360 or 388 for that matter.
Thing is, your SUA varies and will sometimes be well above that (for instance when largish crystals dissolve). Hopefully it will never be high enough for long enough for crystals to develop. I guess the uric acid in your blood could still occasionally become concentrated enough to react with your immune system but that’s no big deal. If that ends up triggering an attack rather than mild and harmless swelling, it’s only because you still have actual crystals hidden in your joints and bones.I haven’t even scheduled an appointment. There’s no way I’d be able to get a blood test next week, even if I thought it would be of any use and half of the med techs weren’t on vacation.
Sine you ask so nicely, dentists over here recommend you also get yourself some fluor gel (do not let children get ahold of the stuff, blah blah). You should use it with the floss but most of us are too lazy for that so we use it like toothpaste instead.I never had an attack lasting more than 4 days while taking that much colchicine, whether I was on ULT or not. I thankfully didn’t have cause to test that statement properly so take it with a grain of salt but, my experience aside, stopping attacks within 3 or 4 days is what colchicine is supposed to do when you take enough.
I don’t know if I would have dared to take colchicine if I had an infection but I’m glad to read it didn’t seem to have hampered your immune system’s ability to terminate the infection. Maybe it was effectively resolved by the time you started taking the pills.I never tried putting salt in the foot bath.
Don’t underestimate random variations as an explanations for small changes in SUA test results. 413 isn’t far from 388. And yeah, your average test result should trend down a bit without a dose change.
You could try 100mg if there’s no sign of your system being stressed by 80mg (liver, hemo and so forth) but you’d probably still face a bunch of attacks if you managed to drive your SUA way down. 120mg wouldn’t be a cure-all.Last but not least, I’m overdue for a blood test but I seem to be doing OK. Thanks for asking.
That reminds me I should also check my BP from time to time. And floss too.It would make sense if having had high uric acid without symptoms for years would lead to substantial deposits requiring a long cleanup time but I’m not aware of any evidence to back that up. The evidence such as it is (it’s only tentative) is only in regard to the amount of time people had untreated gout.
In your case, it doesn’t look like you ever had really high uric acid anyway. Once you start developing gout, crystals are going to form with lower level of uric acid in the blood compared to people who aren’t affected by the disease. This may be a reason why the amount of time during which you had untreated gout is the relevant yardstick in many cases.Lots of people (myself included) have taken more than 1mg of colchicine per day (I assume you meant 0.5mg and not 500mg which would if I’m not mistaken be a fatal dose) for a limited amount of time.
It’s in some cases OK to push the Naproxen dose a bit higher for a limited amount of time as well. Your body would have to tolerate the drug well to warrant such an experiment.
I think it would probably be safer (but also less effective) to incerase your colchicine dose. And combining both drugs without increasing the doses might be the best option. But everyone’s body is different…I looked over your posts and I see I messed up. While you’ve been taking allo for 5 months, it’s not clear how long you’ve been taking a strong enough allopurinol dose. If it’s only been “the last couple of months”, then it’s not surprising at all you still have symptoms.
You also don’t state the naproxen and colchicine doses you’ve tried. They may be inadequate. Fixing that could perhaps give you some relief but you should get that plan greenlighted by a doc (likewise, ask about taking both drugs at the same time).
Other than that, sure: drink water.
And make sure you keep the blood flowing (a traditional way to help with that at home has been bathing your foot in warm water but you might as well take a hot shower if you can stand). Like, avoid sitting in a cramped place without moving or tight socks/shoes. Some recommend exercise (I’d make that very mild exercise if the affected joint is at all involved).
Elevation helps with the swelling and pain but I don’t think it helps with the underlyling problem (that might even hinder its resolution if you keep it up for too long though switching between elevation, non-elevation and back might actually help a bit). Simply relaxing (an actual painkiller might help if the pain becomes unbearable) should also help a it.5 months ain’t much in the grand scheme of things but some researchers have found a correlation between the time during which you had untreated gout and the time it takes to cure it. By that measure, your gout should have been solved already. But that was a mere correlation. And as you say, everyone is different.
I’ve experienced color changes, sure. But color changes just like yours? Maybe not. I only used to get fast color change after changing position (like standing versus lying down) or doing something else that that would affect my blood flow.
Something else I had forgotten: if you’re getting symptoms you’re not used to, it’s worth checking your temperature, checking your skin for small wounds and pausing to ask yourself how you’re feeling. Because there’s a remote chance it could be an infection. Don’t get worked up over nothing: it would be very surprising if it was an infection. It’s just something to be aware of because you wouldn’t want to let that get worse and worse.
