Keith’s GoutPal Story 2020 Forums Please Help My Gout! Starting Allopurinol (Again)

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  • #3530
    Ecpux
    Participant

    Hello All,

    First I want to say thanks for this great site. There is so much info on gout on the internet and most of it is contradictory or commercial. Its nice to see such a well maintained database of truly useful information and I appreciate that.

    I am 31 years old and was diagnosed with gout at the age of 20. At the time I was perscribed Allopurionl (100mg) and Indomethacin (25mg) I started the Aloopurinol and lo and behold in a month I was having the worst gout attack I had ever had. Not knowing the importance of UA control, I decided to stop Allopurinol and continue using Indomethacin to treat flares.

    I would have sporadic flares every few months, each year they would effect new joints. Pretty soon I was apt to have an attack in any joint in the foot.

    When I moved and got a new doctor, he asked me about my attacks. I told him I had 1-2 a year and he said that I should just continue with the Indomethacin.

    Frankly, Indo really doesnt do much for me except for maybe lower the duration of the attack by a day or two.

    Here I sit today, in the throes of about the worst attack i've ever had. Started in my left foot, subisided for a few days, came back to the left foot, spread to the right, and now for the first time ever, my knee is effected.? This is the last straw for me, I can't continue like this and I am ready to start getting my UA under control with Allopurinol again.

    The problem is, I am really nervous about provoking bad attacks by taking it. Someone recomended Colchicine, but I have been told that I would have to discontinue lipitor to take it due to a potentially life threatening contradiction. I am a contract employee in the IT industry and I really worry about losing my job while dealing with the acute attacks that I know will come. I don't like the pain associated with them,. but I have decided to suck it up and do it otherwise it will never get better.

    My questions to people who have started Allopurinol treatment is, how frequently did you have accute attacks while you were getting your UA down? Was the intensity worse? What was the typical duration and time between attacks?

    I know I must do this for my long term health but I am really apprehensive. Any alternatives to Colchicine (I will consider going off of statins if it works well), or any advice you guys (and gals) can give regarding my questions will be very much appreciated. I feel cursed to have to deal with this debilitating condition starting at such a young age, but it doesnt matter what age you are, gout is AWFUL. No one aside from gout sufferers can really understand the pain.? I would like to be around for a good while and not be disabled, so UA control is next for me.

    ?

    Thanks,

    Dave

    #11266
    trev
    Participant

    Maybe you didn't give AP a fair trial last time?

    Coming off it gave me worse flares than going on it, but using another UL med, Sulfinpyrazone, caused only repeated minor flares lasting a couple of days or so when starting out on it- so maybe you are worrying overmuch.

    Doing nothing will be worse, as you know. If AP is finally successful you probably wont need the Colchicine anyway, unless you stress your system by overindulgence in the wrong things. It's not a long term med, really.

    The less meds , the better for me- but sometimes?unavoidable. Good luck!

    #11271
    zip2play
    Participant

    I am 31 years old and was diagnosed with gout at the age of 20. At the time I was perscribed Allopurionl (100mg) and Indomethacin (25mg) I started the Aloopurinol and lo and behold in a month I was having the worst gout attack I had ever had.

    ?

    I hope that before I die I get to throttle a doctor for prescribing 100 mg. allopurinol. I wouldn't do permanent injury but throttling to the point where his toupee flies off will be satisfying. Although maybe an INQUISITION BOOT on the doctor might be more?gout specific.

    The BEST way to initiate an attack in a person with gout is to prescribe 100 mg. allopurinol.

    A substandard dose of almost any drug is?SUBSTANDARD.

    ?

    If you are going to take allopurinol, take 300 mg. because that's where you will wind up anyway and that doseage is the least likely to have you suffer an acute attack. If you get preposterously low numbers (which you won't) you can always lower the doseage later.

    ?

    I have taken Lipitor for 13 years and have taken taken colchicine with it several times?no problem. The drugs are NOT contraindicated BUT several drugs slow the liver's breakdown of statins resulting in high statin levels?and for safety sake, one could halve or quarter the Lipitor dose while taking the colchicine. But like trev said, with proper allopurinol treatment, the colchicne is just for emergencies that may never occur.

    #11273
    patrick
    Participant

    For what it's worth, my experience getting on Allopurinol went fine.? I did get a couple of little flares the first month, but with colchicine they were manageable.? If you can't take Colchicine, Indometh should take care of the flares.? In my experience, colchicine wasn't as quick at bringing pain relief as Indo, but I couldn't bear the side effects of Indo.?? I sympathize with your worries, however, as having gout attacks is totally debilitating and can interfere with your job.? Look at it as an investment in your future.? Once you get the UA levels under control, you'll have your life back. ? I'm one of the very unlucky people who has a sensitivity to Allopurinol and am currently going off it.? Life has been good on it, and I am hopeful I can find a cure for high UA level that works for me.? As everyone says on this site, it's the only reliable cure.?

    #11275
    hansinnm
    Participant

    patrick said:

    For what it's worth, my experience getting on Allopurinol went fine.? I did get a couple of little flares the first month, but with colchicine they were manageable. ?

    I'm one of the very unlucky people who has a sensitivity to Allopurinol and am currently going off it.? Life has been good on it, and I am hopeful I can find a cure for high UA level that works for me.? As everyone says on this site, it's the only reliable cure.


    Now, Patrick, don't you play “gouty god”. It's enough having one playing “God Gout”.
    ?

    Not?”everyone says on this site, it's the only reliable cure“. I, for one, am allergic to Allopurinol, therefore it is NOT the only cure, as far as I am concerned.

    I ask you to be careful to make blanket statements on this forum. The majority of people on this forum need sincere, proven statements. They get plenty of bullshit from the so-called “professional medical industry”.

    #11277
    patrick
    Participant

    All I was trying to say is that getting your UA level below 6.0 is the only reliable long-term cure for people who get gout.? I don't know much about this disease, but I think that is a fairly well established fact.? I'm far from a god on this subject, or any other, in case I gave that impression.

    #11291
    Ecpux
    Participant

    Thanks to everyone for the replies. I appreciate even the different viewpoints on treatment. One of the nice things about this site is the wealth of information that every person has that I can then take and sort through and figure out what might work best for me.

    Just as an update, I am still in rough shape. I managed to get an appointment with my GP this morning. My SO drove me there and wheeled me in in a wheel chair b/c its in both my feet and one knee, which has made walking next to impossible. I've also developed bad back pain, probably as a result of the way i've been trying to get around, but could be gout there too.

    Anyway, my GP was really good about the whole issue. He gave me an intramuscular prednisone shot, and then a 12 day slowly tapering course of oral prednisone. I've never dealt with prednisone before and worry a bit about the side effects, but we will see. He also gave me a round of percoset to deal with immediate pain. He said that because I'm so far into my attack, colchicine would probably not be cost effective, which I agree with.

    He also gave me an order for blood work to check my UA levels, told me to come in 2 weeks after my attack subsided. He said once we had that back we would start allopurinol. I insisted on a higher dose and he was agreeable with it as long as i did a short trial run of low dose to rule out ay allergic reactions.

    Thanks again for the info and I'll be sure to post my progress once I get started on the Allo.

    #11294
    zip2play
    Participant

    hansinnm said:


    Now, Patrick, don't you play “gouty god”. It's enough having Zip playing “God Gout”.
    Not?”everyone says on this site, it's the only reliable cure“. I, for one, am allergic to Allopurinol, therefore it is NOT the only cure, as far as I am concerned.
    I ask you to be careful to make blanket statements on this forum. The majority of people on this forum need sincere, proven statements. They get plenty of bullshit from the so-called “professional medical industry”.


    You know, hansinnm,
    Sometimes it get REALLY tedious making allowances for crabassy old farts, even if they are carrying around pounds of tophi in their feet from years of mismanagement of gout.

    Save your smart-ass shit for those around you who find your demeanor “interesting” although I am sure they are few and far between.

    #11295
    hansinnm
    Participant

    zip2play said:

    hansinnm said:


    Now, Patrick, don't you play “gouty god”. It's enough having one playing “God Gout”.

    Not?”everyone says on this site, it's the only reliable cure“. I, for one, am allergic to Allopurinol, therefore it is NOT the only cure, as far as I am concerned.

    I ask you to be careful to make blanket statements on this forum. The majority of people on this forum need sincere, proven statements. They get plenty of bullshit from the so-called “professional medical industry”.
    ?


    You know, hansinnm,

    Sometimes it get REALLY tedious making allowances for crabassy old farts, even if they are carrying around pounds of tophi in their feet from years of mismanagement of gout.
    ?

    Save your smart-ass shit for those around you who find your demeanor “interesting” although I am sure they are few and far between.


    #11297
    momoy4
    Participant

    Hi everyone good to be back here again. It's nice to know that there is an authoritative community out there such as this with fully supportive members. 2 years ago I got great advice on using allo to bring down my UA levels and it worked! I mixed the medication with a lot of mountain biking and last year I was off allo as my UA levels were consistently low for days even without taking the meds.

    Dumb move.

    About a month ago my gout came back and yes I was stupid enough not to bring back allo again. Last 2 weeks I've been getting one attack after the other. My gout would subside with both celebrex and colchicine but then would resurface in another joint ASAP. (I had two instances where gout pain in wrist gone today but then knee would have an acute attack, last week it was my left foot under seige and when it subsided it transfered to the wrist).

    I took a 300mg dose today to start off allo therapy again but would have a couple of questions:

    ?

    -How long will it take for my UA levels to go down on 300 mg a day allo?

    -Will my attacks be more vigorous and frequent as they start dissolving?

    -Am I experiencing some sort of kidney or renal failure as it is the frst time that I am experiencing continuous and non stop gout flares

    ?

    Hope you folks can help me. And yes I am ever grateful to this community. Hope we can have an FB page.

    #11299

    I'm a bit concerned about describing this as “authoritative.”

    Your health authority should be your doctor, though we have good claim to authority on how to deal with your doctor. Ultimately, your health is the responsibility of a partnership between you and your doctor. I hope this forum, but especially my main gout site, help you develop that relationship.

    And if anything you have read on either site has lead to your decision to stop allopurinol, then you must tell me where it is so I can delete it immediately. I'm particularly worried, as you are the second returning visitor this week to have dropped allopurinol without reference to uric acid levels. Have I really failed you all that badly??Cry

    ?

    As I've said in?Is Allopurinol A Lifetime Drug? and several other places, you MIGHT be able to stop taking allopurinol, but you can NEVER (as in NEVER, EVER) stop annual uric acid tests. Any lifestyle or meds dose changes MUST be accompanied by more frequent test ? say once per month, relaxing back to once per year as levels stabilize. You mention that your uric acid levels stay low for days, but this is to be expected ? the effects of allopurinol do last for days. This is why you rarely get a problem if you forget to take it for one day, and why you should leave two weeks between a dosage change, and the uric acid test you and your doctor use to assess the effects of that change.

    ?

    As you've learned the painful way, failure to control uric acid puts you back where you started. So the answer to your first 2 questions is “it depends.” Not particularly helpful, but nobody can predict the rate at which gout flares will stop when lowering uric acid. What one can say with some degree of confidence, is that they will eventually go if you get uric acid levels below 6mg/dl, and the lower you get it (i.e. aim for 3mg/dL), the quicker it will get rid of old crystals. 300mg is irrelevant ? allopurinol maximum dose is 800mg per day ? your dose should be set to achieve your target uric acid level. Your target uric acid level is the level that you and your doctor agree is the best target taking into account your medical history.

    ?

    Your third question is bordering on crossing the line of what is correct on an online amateur forum. How on earth can you expect other people to take responsibility for the state of your kidneys!!SurprisedYell

    If you are worried about this, you must get to the doctor or emergency room immediately. For what it's worth, I'd imagine that you've reached the common point of many gout patients who do not manage uric acid levels properly. That common point is a level that fluctuates around 6 to 8, so crystals are constantly forming and dissolving. Remember, gout flares can occur during both these phases, so the more unstable your uric acid level is, the more likely you are to have a gout flare. Also, the immune reaction that gives gout it's unique agony can vary, so you might just be more sensitive at the moment. The stress of excess mountain biking or high protein / alcohol might be a factor, but only a proper medical examination can tell you what you need to know.

    ?

    Sorry if some of that sounds a bit harsh, but as you said “dumb move” ? I'm just trying to shock you into “smart move” mode.Smile

    ?

    As for FB, if that's the Fb linked in the bottom left of each page, you'll soon see that I don't have too much time to spend there, though I do quite like it. I would be very interested in ideas/help for getting it going, but I'm struggling to see what can be done there that couldn't be done here. Obviously, if it helps spread the word, then I'm all for it, but I can't see how I can justify the extra time taken to maintain pages and forums there, when I'm struggling to keep up with stuff here. On the other hand, if my failures here are as bad as I suspect from my earlier paragraphs, perhaps I should close the forum here, and move to a platform that is less likely to influence bad life-changing decisions? As I said, all suggestions or offers of help are welcome, but it needs to be a separate topic, maybe in Wishlist.

    #11301
    zip2play
    Participant

    I was stupid enough not to bring back allo again.?

    ?GP said it all but let me add that the word AGAIN should never be added to that phrase. The proper phrase is:

    “I started allopuinol 2 years ago and I have taken it every day since.”

    ?

    Do NOT use allopurinol in a hit or miss fashion. Once started it MUST be continued or there is the devil to pay.

    #11302
    hansinnm
    Participant

    Keith (Gout Admin) said:

    Your third question is bordering on crossing the line of what is correct on an online amateur forum. How on earth can you expect other people to take responsibility for the state of your kidneys!!SurprisedYell


    Keith, please, let me add one other important aspect to your, as usual, excellent comments and advice to us gouties: Just as it is of utmost importance to have regular SUA checks in order to control/manage gout, it is just as important to have regular COMPREHENSIVE METABOLIC PANEL tests performed in order to keep check on our liver and kidney functions, especially, when one is on either, Allopurinol, Uloric or Probenecid. The metabolic tests are one of the few reliable tests which will show if something is going wrong before a full-fledged liver or kidney decease is developing. (This was one of the first tests my rheumatologist ordered, even before I went on Uloric. I had been on Probenecid for 5 months prior to Uloric.)

    #11305

    That's excellent advice, Hans, and I'll make sure it is given more prominence in future.

    How frequent is best for liver and kidney function tests, after the initial test before urate lowering therapy? Once a year as part of annual check-up, or more frequent?

    #11308
    hansinnm
    Participant

    Keith (Gout Admin) said:

    That's excellent advice, Hans, and I'll make sure it is given more prominence in future.

    How frequent is best for liver and kidney function tests, after the initial test before urate lowering therapy? Once a year as part of annual check-up, or more frequent?


    My personal feeling: At least once a year and/or every time one starts any of the gout treating meds, like Allopurinol, Uloris, or Probenecid, with a follow-up w/i 3 months to assure that none of the meds have a negative affect on either liver and/or kidneys.

    However, liver/kidney problems may also arise from other than gout. It's up to the treating physician to monitor and deal with such problems.

    #11313
    momoy4
    Participant

    Thanks everyone. Yeah I figured that I've always been under the scare of this guy:

    thegoutkiller.com

    It's day 2 of my allo revival and it hurts like hell. Metabolic Panel tests actually makes sense and I think I'll have a go at it the soonest.?

    ?

    Thanks again

    #6927
    momoy4
    Participant

    Just update everyone. Now on my 2nd week of allo. Will get UA tested by weekend to see the numbers. I've been still getting the attacks one after the other. The one in my knee is very very painful as we speak…jeez when will the attacks end Frown

    #6531
    zip2play
    Participant

    momoy,

    ?

    Are you taking any analgesics with the allopurinol? Don't be afraid to take whatever?eases the pain?it won't interfere with the allopurinol…in fact, it will help by stopping the inflammation>>acidification>>precipitation process.

    #6521
    momoy4
    Participant

    yes zip. steady stream of colchicine and celebrex. Painful when it wears off. oh and btw—liver and kidney panel tests came a -ok. SUA was at 296.80 umol/L so i guess allo is doing its job. Only have high eisinophils at 7.40.

    #11365
    momoy4
    Participant

    Update:

    Since my last post Wednesday (above) here's what's been happening:

    ?

    While on daily dose of Allo 300mg–which I take evenings, I ?have discontinued Celebrex as there have not been any terrible pain episodes the maginitude of what I had last week but I continue to take colchicine x 2 everytime I sense a twitch. i take the colchicine around 10AM.

    ?

    Thursday: 10 AM took 2 colchicine because of pain felt in my left knee (same knee that has been “gouted” more than two weeeks running)

    Thursday after the colchicine pain has gone away throughout the evenings until early morning

    ?

    Friday AM: Was able to get out to do some light biking in the AM—no pain

    Friday late AM (After Breakfast of yogurt) 30 minutes after some pain surfaces on left problematic knee ( I take 2 x colchicine to avert the inflammation)

    Fridayafter the colchicine pain has gone away throughout the evenings until early morning

    ?

    Saturday AM: Was able to get out to do some light biking in the AM—no pain

    Saturday late AM?(After Breakfast of strawberries) 30 minutes after some pain surfaces on left problematic knee ( I take 2 x colchicine to avert the inflammation)

    Saturday after the colchicine pain has gone away throughout the evenings until early morning

    ?

    Sunday AM: Was able to get out to do some light biking in the AM—no pain

    Sunday late AM?(After Breakfast of bananas and pumpkin seeds) 30 minutes after some pain surfaces on left problematic knee ( I take 2 x colchicine to avert the inflammation)

    Sunday after the colchicine pain has gone away throughout the evenings until early morning

    ?

    Is this becoming to be a strange pattern? I've have noticed that everytime I or take something during the mornings (first meal) the pain happens 30 minutes after and this has become a bit bothersome. Does this mean that everytime I ingest something–my uric acid shoots up??

    ?

    This is getting scary ?Yell

    #11368
    hansinnm
    Participant

    momoy4 said:

    This is getting scary ?Yell


    It should!

    You only talk about your eats, not your acts. If you'd read all the comments on this forum, you'd know that physical activities, especially when you have flare-ups, twinges, or full fledged attacks, you DON'T undertake physical exercises since they increase uric acid levels:The cause of GOUT!

    #11375
    momoy4
    Participant

    Sorry Hannshin and yes I've read a couple of posts in the forum referrring to exercise as a gout trigger. Bear in mind though that I was having these attacks even before I started exercising again(please see my earlier post). And because my knee attack was getting better because of the celebrex and colchicine I've decided to go for a light spin just to keep the blood circulating.?

    ?

    My question is that the attacks (pain) now comes in waves—particularly after eating my first meal everyday. which is why I take the meds until they wear off the next day, which is strange because the attacks never seem to stop–one day it's my knee, the next my foot or my hand.

    Btw today all pain in my knee is gone. I am now having an attack in my right wrist. Cry?My uric acid is 296.80 umol/L and my liver/renal panel tests are all in the lows.?

    #11376
    hansinnm
    Participant

    momoy4 said:

    …yes I've read a couple of posts in the forum referrring to exercise as a gout trigger. …

    My question is that the attacks (pain) now comes in waves-…one day it's my knee, the next my foot or my hand.


    Exercise is only ONE trigger. There are others, too. Since we do not have access to our metabolism's command center, we do not know where the devil ?'Gout” is going to strike next. So don't make life easier for him by exercising, even lightly. Most long-time gouties go through that “Where is the next strike” phase.

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