Viewing 7 posts - 1 through 7 (of 7 total)
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  • #3647
    kineret
    Participant

    Hello,

    I have been lurking here on and off for several months gaining new info all the time. I am 43 yr old ex college football player that has struggled with weight since graduation. I had my first bout with gout when I was 27yrs and it was misdiagnosed as old injury issues with ankle. I was also a heavy drinker for the period discussed here. Once i found a Rhumey and was properly diagnosed, my gout was ok some yrs and really bad others until about??2yrs ago. I had never been able to get on Allopurinol due to the attacks I would get from it and being on the road all the time complicated the situation further.

    I began to get attacks that steriods, cortizone shots, cholchicine, ect would not help as they had in the past, My uric acid number was off the charts. Eventually my attacks became so frequent and severe the doctors we running out of options. Five joints at a time, non reactive to meds, and the episodes would last over a month/ It was a living hell and my job was now at serious risk.

    We tried Kineret injections this past March as we have increased Allopurinol to 500mg daily plus cholchcine. I have has flare ups in my elbows and hands mostly where my worst tophi buildups are. ( I have had surgury in the past to remove tophi and it has burst thru my skin in liquid form during attacks) The attcks now seem less severe and usually end in three days. My current Uric Acid level is 6.1.

    I think I will eventually be up to 600-700mg of Allopurinol soon. My treatment seems to be headed in the right direction but the attacks still depress the hell out of me.

    Has anyone had an experience like this. My weight has increased in the past year as I have been unable to exercise to any real degree and mentally it has taken its toll. Also, I have dealt with some mouth and eye dryness, anyone experience this type of issue with severe gout?

    I think I am getting better but somedays it feels like its an endless struggle.

    ?

    Any thoughts would be helpful! Wishing all a gout free day!!!

    #12061
    limpy
    Participant

    I'm not being a smart ass but why did you wait so long to start Allop? It took me 8 months on and off steriods before my rhummy finally put me on Colchicine to stop the pain. Looking back?I think he was an ass for not starting me on it sooner. My acid level on?my last test was under 4 and i've been taking Allop for about 16 months and still have pain daily. But it's not tears rolling out of the eye kind of pain?I was in when?I started getting these attacks. It sounds like you need to increase the Allop cause you are right at the level where crystals form and dissolve putting you in a bad place.?All?I can tell you is it will get better once you get your acid level down and keep it there. Good luck hang in there. Limpy

    #12063
    kineret
    Participant

    I never saw the allop thru,?I would get awful attacks and?I would stop taking it. Looking back it would have saved so much pain, ect…. As a weekly traveler, I would get these attacks on the road and would just back off to avoid the attacks… I should have bit the bullet yrs ago and I would be ahead of the game at this point.

    #12065
    limpy
    Participant

    Yeah?it sounds like your on the right track now. Just stay with it i'm sure you'll get better. Best of luck. Limpy

    #12068

    kineret said:

    My current Uric Acid level is 6.1.


    That's the problem!

    Must be at 5 or below.

    Better to go a few months much below that to speed up dissolving old crystals, which is why I am about 3mg/dL on max 900mg allopurinol per day.

    It shortens the bad journey to make way for a better one – hopefully a very long, gout-free journey.

    #12148
    vegetarianGuy
    Participant

    Keith you taking 900mg Allop? surprised

    #12153

    My relationship with allopurinol is similar to zip2play's relationship with colchicine – why bother wasting time with a couple of pills when you can blast the beast with the max.

    The crystals are coming out of my joints, and the visible tophi on my arms and knee are shrinking.

    ?

    After years of reading the horror stories about inadequate dosing and horrendous journeys similar to the story here I am absolutely convinced that this is a good move. I do not expect to stay on 900mg forever, but will keep it there until the lumps have gone, hopefully within 6 months. After that, a slow and steady dose reduction to keep uric acid at 5mg/dL (0.3mmol/L). Happy days.

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