Keith’s GoutPal Story 2020 Forums Please Help My Gout! Uric Acid WHAT WOULD YOU RECOMMEND?

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  • #3687
    zip2play
    Participant

    Hi guys,

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    It's been about 15-20 years of gout for me.? I started treatment many years ago with uric acid around 8.0??taking 400 mg./allopurinol.? I never had another attack of “frank gout” (I love the old term:D)

    Flushed with the success of the treatment I rolled back to 300 mg. after a year.

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    After 10 years of this a new doctor must have read something about long term allopurinol use so he cautioned me about continuing 300 mg. (I think that becasue HE had not diagnosed my gout, he didn't believe it existed?anyone else have a new doctor like this, of COURSE you have wink)

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    So, I went down to 200 mg. for awhile and my SUA jumped up to 6.7. Twinges increased occasionally needing 2 or 4 colchicine to abort any consequences. Soon I realized that 300 mg/dL was right for me. So out of 15 years, perhaps 13 of them have been with 300mg./day.

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    My SUA has never been below 5 mg. or even 5.5 if memeory serves. Last week's reading was 5.7. I almost always am below 6.0…but JUST bellow.

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    I am seeing very occasional small tophi appear on my knuckles, one biggish one on thumb (resolved by self surgery,) two tiny ones on the distal joint of the little right finger (perhaps as a consequnce of supporting the hand during computer mouse usage?) One maybe (the white lump when skin is stretched) on left index finger.

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    Ancillary thought: I have confirmed plaque deposits in my coronary arteries?one was stented open 7 years ago. I have very occasional angina when exerting myself when under mental stress. “Oh my God, I'm going to miss that train?gotta run!” And I have a mangled lower back which gives me fairly frequent spasm attacks (3 days.) I am strong and work out regularly?both strength and aerobics.

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    Okay, now the big question:

    Should I increase my dose of allopurinol? Should I consider adding probenecid?

    #12367
    hansinnm
    Participant

    zip2play said:

    Hi guys,

    Should I increase my dose of allopurinol? Should I consider adding probenecid?


    Are you asking seriously or just testing the waters?

    Let's assume (and you know what that means and both of us meet that criteria, I think) it is #1: My recommendation is that you continue to do what you've been doing for 10+ years, if you don't have any attacks, flare-ups or other, gout-related pains.

    Having gone the Probenecid and Uloric-80mg+Probenecid route I don't see any significant improvements except a ?slightly lower SUA level. As far as dissolving tophi go, I, personally, think that the jury is still out. Not until I have a big, clear “picture” which shows that I don't have any tophi anymore, I am not buying that “fuzzy” picture of diminishing MSU by using either Allo or Uloric. I do buy that they keep SUA levels (uric acid in blood) in check, but I have yet to see concrete proof of them dissolving MSU barnacles.

    #12368

    My dear friend zip2play,

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    I'm trying to stay away from this old style forum, as I work to make the new faster, MSIE compatible versions better, and more accessible, but I cannot let this one go by.

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    You have given so much to these forums over the years, that I have to respond. You are one of the few gout patients who takes true responsibility for treating your gout, and you have spent considerable time researching best methods, and sharing your findings.

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    As a relative newcomer, I have been impressed by the recent recommendations to pitch 5mg/dL as the safe limit. We know that 6.8 is the crystallization point at normal blood tempartature. But we also know that lower temperature in the extremeties lowers the crystallization point. We also know there are daily fluctuations in uric acid levels, and there are treatment fluctuations, as lowering blood uric acid causes old crystals to dissolve and temporarily increases levels.

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    In a nutshell, we need a good safety margin to be sure that new crystals do not form. 5mg/dL (0.30mmol/L) gives us that safety level. My gold standard is 5, and I strongly recommend that all gout sufferers adopt this. There may be individual circumstance where compromise has to be made, e.g. for kidney problems, but they should be the exception rather than the rule.

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    So the question remains ? allopurinol increase, or allopurinol plus probenecid. Logic dictates that, if uric acid clearance is an issue, then probenecid is the answer. And the proof is with a 24 hour urine test. Though the values will be affected by allopurinol, I can see no reason why the test should not be valid. Do the test, and then add probenecid to your regime for 4 weeks before a second test. If clearance rate has increased, then probenecid is helping. But the true goal remains at 5mg/dL, so even adding probenecid might mean extra allopurinol. The numbers will dictate the plan, and I wish you the best of luck with getting the right plan that suits you.

    #12370
    zip2play
    Participant

    Thanks guys, I appreciate your input.

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    I re-looked at my?lab results?and this week's number was actually 5.3 rather than 5.7. So if I round it it comes to 5 rather than 6 (insert belly laugh here! laugh)

    I guess I should be content.

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    Hans,

    While no acute attacks, I DO tend to be forming small tophi on my fingers, my feet ache after a long walk, and I have a SOMETHING (probably a Morton's neuroma but possible a tophis) in the middle of the right ball of my foot which feel llike a BB when i walk in harder shoes. And of course, I have a back from Hell. So I have some MAYBE issues. (And of course I DO get twingy when I overdo my Black and Tan?next month!)

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    Perhaps if I can add another 100 mg. allopurinol without getting charged DOUBLE I might do it. I don't know how pharmacies bill for 400 mg. as opposed to 300??? I'll go talk to my pharmacist.

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    (Current drug problem problem: insurance issues switched me from branded Lipitor (atorvastatin)?after 10 years to generic?simvastatin. For the first time in 10 years I have gotten ROTTEN blood results but Lipitor costs over $100 a month.frown?I'll work something out.)+

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    I guess my ultimate concern should be preventing a heart attack more than preventoing sore feet, eh what?

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    In a nutshell, we need a good safety margin to be sure that new crystals do not form. 5mg/dL (0.30mmol/L) gives us that safety level. My gold standard is 5, and I strongly recommend that all gout sufferers adopt this.

    I agree 100%?I'd LOVE the safety margin afforded by <5.0, especially if urate is atherogenic.

    #12372
    limpy
    Participant

    I?hate being a puppet on a string to these damn insurance and drug companys.?I hope everything works out for you Zip. Good luck. ?Limpy

    #12373
    hansinnm
    Participant

    zip2play said:

    ?Hans,

    While no acute attacks, I DO tend to be forming small tophi on my fingers, my feet ache after a long walk, and I have a SOMETHING (probably a Morton's neuroma but possible a tophis) in the middle of the right ball of my foot which feel llike a BB when i walk in harder shoes. And of course, I have a back from Hell. So I have some MAYBE issues. (And of course I DO get twingy when I overdo my Black and Tan?next month!)?.


    Zip, something just doesn't seem right. If your SUA is around 5+ you “should” not get new tophi. If you do then all our theories and statements ?about MSU forming if the level is above 6.8mg is out the window. Besides, we also do know that there are mortals with a SUA of 10+ and NO gout.



    Maybe us gouties are all decendents of Henry VIII, we just were never told.wink



    Maybe allopurinol contains some secret ingredient to keep us hooked for life, and if we go off we go through severe withdrawal symptoms=attacks, just like a heroin druggie.

    #12375
    zip2play
    Participant

    Hans,

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    I think it has to do with the lowered solubility in our extremities. I guess there's no way to find out the REAL temperature in the distal joints of my fingers, but it is certainly below 98.6 degrees, perhaps FAR below?

    So? maybe??there's no solace in solubility of urate of 6.7 at an artificial generalized “body temperature.”

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    On the other hand perhaps the SWINGS in uric acid are dramatic over a day. I am going to do an experiment when I see my doctor again in January (when my new insurance kicks in.) Since I always have my cholesterol checked, I am ALWAYS fasted when my blood is drawn. Next time I will pig out at lunch and have a blood draw in the afternoon. That will be my first full stomach urate reading ever. Perhaps it will be dramatically higher than usual?

    But I DO need my cholesterol checked…a dilemma.winkcoollaugh

    I'll work something out.

    #12379
    hansinnm
    Participant

    zip2play said:

    Hans,

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    1) I think it has to do with the lowered solubility in our extremities. I guess there's no way to find out the REAL temperature in the distal joints of my fingers, but it is certainly below 98.6 degrees, perhaps FAR below?

    So? maybe??there's no solace in solubility of urate of 6.7 at an artificial generalized “body temperature.”

    ?

    2) On the other hand perhaps the SWINGS in uric acid are dramatic over a day. I am going to do an experiment when I see my doctor again in January (when my new insurance kicks in.) Since I always have my cholesterol checked, I am ALWAYS fasted when my blood is drawn. Next time I will pig out at lunch and have a blood draw in the afternoon. That will be my first full stomach urate reading ever. Perhaps it will be dramatically higher than usual?

    3) But I DO need my cholesterol checked…a dilemma.winkcoollaugh

    I'll work something out.


    Ad 1) I am sure that there is a difference between body blood temperature and?distal joints of fingers. I do know, when I am sitting in my sail boat, sweating my balls off in my wet suit and my fingertips are as white and stiff as pieces of chalk, that the temperature difference between those extremes is more than one degree, and probably more than 20 degrees. However, I am not forming any tophi now nor any of the bubbles
    filled white, “pussy liquid”. I am calling it “pussy” because it looks like pus only it is whitish instead of yellowish.

    Ad 2) Zip, I don't think that you'll get a decent, logical mg reading of your SUA. Reason: For food to be completely digested and ingredients absorbed by the blood system, close to eight hours pass, which means between lunch and blood draw not enough time has passed to result in a significant, reliable figure.

    Ad 3) You do need to be w/o food for at least 8 hours for the cholesterol check, don't you?

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