Keith’s GoutPal Story 2020 Forums Please Help My Gout! Your Gout i would welcome a gout diagnosis right now.

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  • #3670
    polecat
    Participant

    have not posted in a while,quick update.hand and wrist swelled up in may 2011.diagnosis, septic arthritis.emergency surgury done,irrigation and drainage and uric acid crystals viewed.cultures negative for sepsis.gout diagnosis made and i fit all the risk factors,51 y/o male,family hx,diuretics,poor diet and alchohol use,etc.done deal,right.allopurinoll started shortly after.went through what i thought were the usuall allopurinoll side effects.a flare from time to time relieved by prednisone.affected joints were asymmetrical.colchicine was out[stomach issues].sua,s levels dropped after each bloodraw.thought i would be in the clear any day,sua now at 5.3.now as weeks go by,more and more joints become affected,now symmetrical, and pain,stiffness,swelling are every day occurance.rheumotoligist drops the bomb on me after a couple visits.auto immune disease,leaning toward rheumatoid arthritis but rheumatoid factor lab and associated bloodwork within normal limits.so now without a diagnosis,but rheume is suspecting sero-negative ra but not ruling out the other gaggle of auto immune diseases.was i symptomatic of gout at all?dont know.sua was elevated,uric acid crystals noted in surgury.still taking uloric.now on meds that make gout drugs seem tame, and its a whole new ballgame.gentlemen,learn from my experience.as i found out,there are a multitude of conditions that cause joint pain and swelling.do not get gout tunnel vision because one doc took a look at you and said it was so.agree to let the doc needle aspirate that effected joint so you can get a proper diagnosis as painfull as it is.make sure you visit a good rheumotoligist.hope all are doing well.polecat.

    #12178

    Thanks, polecat – I for one am doing very well, though I am concerned about your continuing ill health. My thoughts:

    1. If uric acid crystals were found, you certainly have a gout-related condition. Because acute gout (i.e. the painful flare) is an immune system reaction, it is perfectly possible, and apparently quite frequent, for people to get uric acid crystal build up without acute gout flare. This extreme form of asymptomatic hyperuricemia? (high uric acid without gout symptoms) presents some serious issues – the buildup of crystals in the joints will erode ligaments, cartilage and bone leading to osteoarthritis, but physicians are loathe to treat uric acid where it is not causing acute pain. Your experience in May proves that you have gout.

    2. For many years, I believed that getting uric acid to 6mg/dL (0.36mmol/L) was a good goal. However, I have gained knowledge about natural uric acid level fluctuations, effects of low temperature, and seen British recommendations to set the upper limit at 5mg/dL (0.30mmol/L). From this, I now see 5 as the upper limit. (I'm gradually changing recommendations on my websites to match this, but I am aware that there are still several instances of 6mg/dL limit)

    3. One of my early findings was that uric acid crystals dissolve much quicker at lower levels. Personally, I have set my target at 2 to 3 mg/dL for at least six months to try and speed up the crystal dissolving phase. Despite this, I get a gout flare about once a week though I do find these only last a couple of days.

    4. Gout does not preclude other arthritic conditions.

    ?

    Through experience, I like to believe that I have a good handle on how to treat gout. My personal view is that your gout treatment needs to be more aggressive. In my case, I need to clear out the uric acid accumulation to remove any confusion with effects from an accident in April. In your case, I feel the gout issue mightl be confusing diagnosis of a separate condition, or it might be that you are simply suffering effects of uric acid crystal partial dissolving. I simply do not have the medical expertise to suggest a strategy for other arthritic conditions, but I would personally recommend discussing, with your doctor, a lower target for uric acid for six months.

    My recent experiences have led me to think more clearly about the processes of curing gout. I deliberately say curing gout in the hope that zip2play will join in with his views that gout cannot be cured. I usually refer to fixing gout, or gout freedom, as being the state where uric acid is under control, and gout flares no longer occur. We know that febuxostat and allopurinol are very effective at stopping uric acid forming from dietary sources. Allopurinol is regarded as being 50% effective at stopping uric acid from our own body tissues regenerating, and I assume febuxostat has similar properties. Only Krystexxa (pegloticase) has any effect on existing uric acid pool, converting it to harmless allantoin. I know that zip2play is very sceptical of dissolving tophi, as they are very well protected by the protein sheath of sacrificial white blood cells. I share his scepticism to an extent, but I believe that the majority of uric acid crystals will eventually dissolve as protein sheaths are breached. The exact dynamics are unknown, but I have concluded that most uric acid crystals will eventually dissolve, but this is not a steady progression. Suddenly, pockets of uric acid crystals will break free, and start dissolving in the generally low uric acid environment of an allopurinol or febuxostat dosed gout patient. When this happens, the dissolved uric acid in the blood rises, and it seems perfectly possible that the general level might rise a couple of points, giving a situation of? an acute immune response to dissolving and new uric acid crystals at the same time. That is really my long-winded way of saying aim as low as possible with your uric acid level, and consider alkalizing diet or probenecid to get rid of dissolving uric acid as quickly as you can.

    I know I have focused purely on gout issues, and I know that I have a tendency towards gout tunnel vision. I do not want to suggest that other conditions should not be considered. However, my tunnel vision dictates that I have to suggest you get the gout dealt with properly before you lose too much sleep worrying about other possibilities.

    #12190
    polecat
    Participant

    keith,thank you for your comments and concern.

    #12194
    zip2play
    Participant

    Yes,

    I agree that finding urate chrystals in a painful joint, or even an old tophi is an almost foolproof gout diagnosis. Too bad many are not lucky enough to get such a clearcup diagnosis.

    ?

    I was lucky in that after about 5 attacks in my instep/ankle/ metatarsal I got PODAGRA. THAT is a diagnosis? to anyone with eyes (and a vervous system able to perceive pain.) After 2 weeks of agony a 22 hour?instant cure with colchicine was a 100% diagnosis.

    ?

    But I sympathize with those who get on the diagnosis treadmill without resolution. A thousand years ago your barber could tell if you had gout or not but NOW they have tests and a differential diagosis of 100 arthritic conditions?an one doctor out of a dozen who can make the difffferential diagnosis correctly. Try going through all the testing to rule out Lupus?talk about a treadmill with nothing more than a guesstimate at the end.

    ?

    HMMM?gotta love the doctors who will get 5 different results pointing to NOT RA and then say you probably have RA. And I know these quacks exist. Why do the tests if the diagnosis is a priori? That question was rhetorical: because it generate a high income.

    ?

    Septic arthritis>>>surgery>>>no sepsis? I hope you sued his ass good.

    ?

    So polecat, are you convinced of your gout diagnosis?

    ?

    Keith,

    Coincidentally, I went into my “tophi is forever” chant on another post only a little while ago. My personal experience was the only way my few tophi went was through the skin…not the bloodstream. But I look forward to your study..and thanks for being the guinea pig.

    #12196
    hansinnm
    Participant

    zip2play said:

    Keith,

    Coincidentally, I went into my “tophi is forever” chant on another post only a little while ago. My personal experience was the only way my few tophi went was through the skin…not the bloodstream. But I look forward to your study..and thanks for being the guinea pig.


    I agree and through surgerycry. (And they can't even remove all of them that way. Too many nooks and crannies for the barnacles to grab hold of the joints, etc.)

    (I know, Keith laughed at my example that those barnacles don't dissolve like a spoon full of salt or sugar in warm water.)

    #12203

    hansinnm said:


    ?

    (I know, Keith laughed at my example that those barnacles don't dissolve like a spoon full of salt or sugar in warm water.)


    I didn't laugh. I blew you a kiss. Might have made other people laugh though.

    My unscientific testing by feeling my lumps (sic), reveals slow progress. The pea is still a small pea. I do not know if tophi will just get smaller, or if they will dissolve completely. Stay tuned for future progress reports about my lumps.

    ?

    I'm encouraged by reports from rheumatologists:

    HR SCHUMACHER – 2008: Perez-Ruiz and colleagues have shown that tophi can be dissolved by decreasing the serum urate level

    Natalie Dubchak and Gerald F Falasca 2010: In persons with tophi, prophylaxis [an NSAID or colchicine] should be continued until all tophaceous deposits have been dissolved.

    John Darmawan, MD, PhD, FACR – WHO Expert on Rheumatic Disease, Geneva, Switzerland & Semarang, Indonesia : What are the long-term outcomes of maintaining a serum urate level of < 5 mg% in Chronic Gout
    with tophi? […] the number of small tophi are dissolved, the size of large tophi are reduced, and formation of new tophi are terminated.

    I'll leave the rest of the 1040 results for another day.

    #12204
    hansinnm
    Participant

    Keith (Gout Admin) said:

    I'll leave the rest of the 1040 results for another day.


    I'll join you, Keith, in your campaign, in another day, after/when I have joined the rest of the 1040 results!kiss

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