Progress..? or not?

This topic contains 11 replies, has 2 voices, and was last updated by  nobody 4 months, 3 weeks ago.

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  • #6947

    d q
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    @nobody
    @keith

    Following post: https://goutpal.net/forums/topic/total-change-in-situation/

    I did my blood test a few days ago and the results are in..!!
    UA test a month ago was 366ummol (60mgs Febux).

    Update:
    This time 388ummol (so +20 from my last result)..!
    Liver markers are fine, hemo seems fine so far too!
    Are we finally stable? (366 / 388 being small difference)

    I haven’t seen my doctor or rheumatologist since these results but they originally recommended I go straight to 80mgs and I was definitely not going to do that so that advice probably wouldn’t change if they did see me anyway.

    So I guess that brings us to the cross roads with a few options;

    1. Stick with 60mgs for another month to see how it goes?
    [I believe no new crystals will form at 366-388..? am I safe..?]

    2. Move up to 80mgs for a month and see how it goes?
    [Is this actually necessary..?] [are crystals dissolving anyway at 388..?]

    I’m sure I’ll have another few questions based on your advice.
    Thanks guys!

  • #6948

    nobody
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    Very good news.

    You could begin by trying for 70 mg, without paying much attention to the exact amount you shave off the pill before taking it. A couple of mgs won’t make a difference at this stage.

    Your SUA is above the recommended value and, assuming side effects aren’t an issue, we would generally recommend aiming lower anyway. I expect future tests would in time yield lower results on 60mg but you can’t rely on that.
    Your liver markers and so forth being OK, it comes down to how you feel about the unmeasurable side-effects.

    I don’t think you can rule out crystals forming completely considering the variations in SUA and temperature but the main point of lowering your SUA from here is to speed up the dissolution of existing crystals (they can still cause damage, and the drugs you take for gout symptoms have side effects as well). There seem to be benefits in lowering SUA slowly but you’re doing it slowly enough already.

  • #6951

    d q
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    Thanks @nobody – top man.

    Yep, I think it’s best to go for 70mgs for a few weeks and see how that goes. By the looks of things it may be a case of 80mgs for the full safety net but I want to do this slower then the doctors want me to.

    The question I did have (in addition to a few more that will crop up) is at 388ummol, are crystals actually dissolving in retrospect to scientific findings and understandings..? The reason I ask is because if they need to be far lower then my current highest result which is 388ummol then I’m worried if the extra 20mgs won’t be be enough?

    What if the 80mgs isn’t enough? Do I have to cut a pill and a bit from another one? From what I understand the only next increment is 120mgs!

    Thanks guys.

  • #6952

    nobody
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    Crystals dissolve at higher values than 388. But crystals aren’t all equal with respect to temperature and isolation from the blood. More importantly perhaps, SUA varies from day to day as well as throughout the day. The generally recommended target value is lower so as to afford a safety margin, not because crytsals can’t dissolve above 400. Indeed, tophi shrinkage has been measured when patients tested no lower than you do now (though shrinkage happens faster with lower values).
    There’s also the matter of largish crystals being suddenly exposed to consider: dissolving crystals will raise your SUA, potentially saturating your blood so that the crystals in question may stop dissolving until your body is able to get rid of enough UA through urine and so forth. That may be bad news in terms of attack duration and joint/bone damage, especially if you excrete uric acid slowly as I suspect.

    80mgs should be enough.
    There are diminishing returns to increasing one’s dose and the maximum dose recommended by the original manufacturer is only 60mg. Of course people take more than that all the time but I wouldn’t push it unless it actually was necessary.

  • #6953

    d q
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    Totally understand – thank you.

    I have noticed on so many occasions when I get pain in the area drinking large doses of water seems to really dampen the pain. I think as you say these might be a large deposits or clusters of them breaking off and the water comes in just in time to flush it all out. I haven’t tried waiting it out without drinking large volumes of water in case it turns into a nasty attack.

    Hypothetical here, let’s say 80mgs drops me to a maximum of 340ummol at most. Now from what I understand from you is crystals can dissolve at slightly higher UA values then this but assuming in the darkest of places where the lowest UA value is required for dissolution, what would this number be? The reason I am paranoid or panicking is the worry that the number required will always be lower in order to de-bulk fully then I can achieve with monotherapy.

    I mean if its a question of time, then I guess one can just wait it out, the question is if at all its possible in those really dark die hard stubborn areas?

    Statistically, does one eventually require less medication after all crystals are flushed from the body (like going from 80mgs back to 60mgs for e.g.)?

    There is always a chance I might need less one day too if my hemo condition gets a medical advancement I guess.

  • #6954

    nobody
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    The generally recommended target is 350 or 360 so you should be OK. Barring exceptional circumstances, all crystals are supposed to be eliminated in due course by dropping SUA to such values, with some safety margin to spare.
    As far as I know, this is what most studies find. I remember one study showing ongoing bone damage in some cases but I guess this might be OA or something rather than persistent uric acid crystals.

    You might benefit from lower SUA values than 340, and I’m confident you’ll achieve them in time.
    But don’t let our host’s bullishness about dosage get to you: in most cases, lower values are to be filed under “nice to have” rather than “necessary”.

    I’m not aware of any stats about treatment vs. maintenance doses but some guidelines mention lowering the dose after symptoms have gone away.

    Not to confuse you but it might be drinking water affects acidity in your body. I’ve been somewhat simplistic above and in my last few posts, talking as if it was all about SUA but acidity is a complicating factor, and is part of why diuretics trigger attacks (SUA can decrease slightly while the amount of uric acid in the whole body as opposed to the blood increases). Hence people promoting baking soda as a gout cure and so forth.

    Ultimately, we will only know whether 60mg or some other febuxostat dose works for you by its effect on your symptoms over the years. Blood tests are our best guide in the short run but they aren’t the whole story.

  • #6957

    d q
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    “Host’s bullishness dosages!” – That had me laughing in tears!
    No way – not this time. I’m doing this slowly and carefully.
    I’m sure the express method has it’s benefits but I unfortunately I am not one who got to experience them.

    I really hope your right in the possibility of achieving 340 at some point. If I remember correctly I think my rheumatologist mentioned something about adjusting the dose after values settle in general. So when they mention 360 as the upper figure, does that include the buffer or is that + a little buffer?

    Like you say, all these blood tests are snapshots and don’t illustrate the full picture. I mean take my abdominal pain. I didn’t have any pain at all for a whole week! Yesterday on the other hand it knocked on my door step again. Although, that is when I increased to 70mgs! Psychological or Side effect of the increase, who knows! Maybe it has nothing to even do with Febux and I’m slowly wittering away! 🙂

    2017 was a challenging year. 2018 has been so far softer. I just want all this crap behind me. There is so much I’d like to do yet every time I get some pain in my foot I just feel shit again. Let alone start worry of what may come.

    Not too sure I completely understand the acidity part by the way, another example would be helpful..?? 🙂

    Thank you so much for your last reply by the way. I don’t say this much but your detail and clarity really does help.

  • #6958

    nobody
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    360 is supposed to include an adequate buffer but it looks like there is a growing recognition that a lower target is beneficial or even necessary in some cases. Obviously there is more of a safety margin at lower values but 360 seems to be low enough in most cases. And you should in principle be able to reduce the need for a safety margin by behaving carefully.

    Don’t worry about the acidity thing. This stuff often goes above my head so if you’re curious, best read the literature yourself. Bottom line: SUA isn’t the whole story, beware of diuretics, be sure to eat veggies and drink lots of water.

    You’ll probably still have a few bad days but your average day should get better over the course of the year. In time you will stop being paranoid about every foot ache.

  • #6964

    d q
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    Thanks – Hope your well mate.

    I’m assuming you mean by watching my diet (behaving carefully)?

    Interesting the acidity thing. I’m going to have a read of it. On another note,
    this brings me to what I believe is a good question, this water thing.
    If Febuxostat blocks UA formation, health benefits aside here, does one still have to drink vast amounts of water? I know this might be necessary in the initial stages (as I have witnessed [debulk, flush out, etc.]) but is this something that needs to be constantly maintained. The reason I ask is I have noticed some weight loss since starting Febux and I am aware this could be the drug but I also think it could be my serious increase in water uptake..?
    I’m carrying water with me everything and frankly its getting obsessive!

    I have had a few bad days recently actually. My podiatrist required to do a few modifications to my insoles which resulted in me having to use the ones that come with my shoes and after just two days of using them my weak foot is killing me. It get’s better here and there but generally its been pretty bad. I mean can just using different insoles cause such pains? I’m assuming a few things here though; change of weight distribution, change of comfort cushioning; etc. etc. but I was also thinking that it could be the change of bone movement/positioning causing crystals to break off causing this pain affect?

    believe me nobody, I am counting each day by day and hoping this stupid pain will eventually disappear. I’ve been keeping as patient as I possibly can but it’s just tearing me apart how long this stuff can take! This slow constant pain is just debilitating on some days. I mean how long can this chronic pain last! How long can it take to dissolve these nasty things!

    Sorry for the rant!

  • #6965

    nobody
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    Careful behavior goes further than diet. Look up general recommendations for gout sufferers if you need a refresher. That would include drugs, clothing, physical activity and indeed water intake…

    I’ve also been carrying water around. Obviously you can overdo anything, even water.
    How much you might need water, I have no idea. Other than to carry out an excretion test and read up on what the result implies, I don’t know how a doctor would go about making that determination. But you could try experiming on yourself. Write everything down and before long you should be able to take a good guess at what does and doesn’t make a difference in your case. Keep in mind it’s kind of early for you to take chances though.
    In my case I noticed that, rather than having to drink a set amount, water intake needs to balance water loss. Typically, I would drink when I’m kind of thirsty (which means I would still be drinking quite a lot). But when it’s especially hot and I’m sweating for instance, then I force myself to drink.

    Sure, in principle changing the way you walk could affect crystals. But it could also be unrelated.
    I think that you should be able to pick up clues to determine if any pain is (partly) caused by gout or a gout-like condition. For instance: redness (even if it’s slight, the location ought to be telling). You’ve suffered from this long enough to make a good guess, haven’t you?

    As you probably know, in some cases it can take years at the recommended SUA level for crystals to go away entierly.

    Drugs can deal with this type of pain, especially when there’s reason to assume it’s temporary. I don’t know your history and so forth so I can’t balance the risks and benefits in your case but if there is no particular reason why you have to endure this, you should talk to people about how to go about getting proper care in your country. I think Keith suggested talking to an experienced nurse.

  • #6978

    d q
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    Hello again! I think the gout knowledge I’ve accumulated between reading, yourself and Keith has made me into half an unqualified rheumatologist 🙂

    Drugs, never took em, never will. Shoes can be tricky at times and this could be one of the reasons I get pains every so often. Physical activity isn’t much at all. Only walking and nothing more. I really want to get into skipping as that is a serious all round yet simple workout but I think it’s early days to push the toe joints and that ultimately is where all the weight will be applied. Do you do any exercise? If so what do you do to keep healthy? Water intake is mammoth. For my size and weight anyway, it is A LOT. I will however start to taper down once I get my next blood test done in about 2 weeks or so. That will probably be amongst the most important.

    I have to accept the excretion test is just not going to happen through the government health care system. I’ll have to do that privately but either way it will not really give a clear indication any more since the UA levels are now in the 360-380 range so I am assuming enough is leaving to maintain that level. I use to keep a diary of nearly every change I make but as time passed I became less and less involved. You are right, maybe I should expand on this again. I believe you drink more water because of the Diabetes..? p.s. how much do you get through in an average day? Just a general average day?

    No redness is found on the actual troubled joint and foot ball but redness can be found somewhere on the middle toe joint but it is absolutely painless. Maybe some sort of UA collection? Yes, I have suffered enough but the pains all vary to be honest nobody. Sometimes its a concentrated pain and sometimes its the entire foot which is in a dull pain. It’s sort of ‘tired foot pain’ or a ‘weighted foot pain’ despite not much activity on it. I mean the other foot doesn’t get the same feeling anyway. I need to relax it every so often. Maybe its permanent damage and I just need to live with it…. or maybe as you say its a question of time…

    I’ve discussed this with very good rheumatologists and the answers have always been so similar. Either its;

    a) “if its gout pain as a result of UA build up then after a “while” on ULT it should eventually clear up”.

    b) “if its permanent damage you may have to just have to apply a thin amount of Voltarol on the foot on the bad days”.

    or near enough anyway.

    It’s definitely not low grade inflammation because the foot doesn’t look inflamed at all.. Something else is wrong and I just cant work it out.

    Just over 2 years ago I was working abroad and holidaying in such beautiful places. Now walking is a chore and worry is a norm. Sometimes I ponder how can youth health turn so sour so fast. Gout is insidiously evil.

  • #6982

    nobody
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    I drink more water than anybody I know. Or at least I’m the only one who doesn’t hide my empties.
    I’m not counting liters.

    Even assuming you don’t have access to a swimming pool, a bike or exercise machines, you have an upper body. And even if you couldn’t exercise your upper body for some reason, you could still get a workout by lifting your own weight without moving your feet (hang onto something with your arms for balance if needed to avoid using your toes at all). I was advised to balance “shallow” and “deep” flexing to exercise the muscles on both sides of the thighs/knees. Not as fun as swimming and so forth obviously but you could hit a podcast or something while you do it.
    If you can’t even do that because of an attack, my fave subsitute to get my heart going has been hot showers. Sauna might be better but if you have access to that, you probably also have access to attack-friendly exercise gear you can use while lying down.

    What I call gout-type pain comes with specific feelings and/or redness patterns which have occured together with (what looked like) regular gout attacks as well as less serious symptoms. I don’t recall ever having uniform pain over the entire foot.
    Non-specific foot pain/tiredness, I would hesitate to associate with gout: if it could be anything, it could be anything.
    Maybe you’ll start noticing more clues over time. Better yet: maybe you’ll stop worrying as these symptoms fade away.

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