Keith’s GoutPal Story 2020 Forums Please Help My Gout! Suffering from Multiple joints condition for last 2 months.

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  • #3268
    ppkul
    Participant

    Suffering from Multiple joints condition for last 2 months.

    Hi,

    I will try and give as much information as possible.

    I have gout for last 15 years or so. I am now 38. I am overweight (BMI : 28)

    Current status : Left foot (all the bones from toe tips to the ankle) are affected. Right knee is also affected. It has swelling like a big ball. Due to the swelling, I can bend it to only say 60%. This is going on for last 2 months. I cannot even walk properly.

    Eating / drinking : I am 100% vegetarian. No alcohol of any kind, no smoking.

    Physical activity : I am IT professional (freelance). I work from my home. So there is no physical activity for 8-10 hours when I am working. When I do not have gout activity, I walk for 45-60 min. daily. Currently I go for 1 hour swimming every day. I found that I can do this without stressing the affected joints.

    Medication : First 2 attacks were wrongly diagnosed as some injury. When first detected I remember the UA reading was 7.5.  I was prescribed AP 300mg (100 x 3) every day. I took that for 2 months. Monitoring it every 2 weeks. When UA was bellow 6, I was asked to lower the dose to 200 and take it for 4 weeks and then reduce it to 100 for 4 weeks. I was also prescribed Nimesulide 100mg for pain relief.

    After this when next attack came (about 1.5 years after the first attack.). Doctor told to repeat the same. He also told me to do the same whenever I have attack.

    Last week US reading : 5.4

    Currently I am taking 300mg AP for last 6 weeks.

    Now my questions:

    1.       Why it is taking so much time to subside the current attack?

    2.       Why do I have major gout attacks every 1.5-2 years? What can I do to reduce the frequency.

    3.       Is Nimesulide safe? I try and avoid taking it as much as I can. But right now I have to take one pill every one and half day. I have consumed 20-25 pills in last one and half month.

    4.       Can anyone suggest  something to free me from current suffering very fast? I just cannot take it anymore. As I said it is going on for last 2 months. I was literally crying last night.

    Thanks in advance to all of you.

    Parag

    #8689
    odo
    Participant

    ppkul – sorry to hear you're having a tough time. A couple of things spring immediately to mind:

    1. Allop is not a short term measure and is usually for life. If your doctor doesn't know this, it is a good indication of his level of expertise concerning gout and he is not much use to you. Find someone else. You will find a wealth of information here.

    2. Nimesulide is a Cox-2 selective NSAID, which is mainly used for osteoarthritis and only used as last resort when there is a problem with ordinary NSAIDS, such as history of peptic ulcer. So, your Dr may be hedging his bets because he doesn't really know what's wrong with you.  Cox-2 are not considered safe; added to the usual risk of intestinal bleeding with long term use of NSAIDS, there are also risks of heart failure, stroke and serious liver toxicity and they have been withdrawn from the market in many countries.  Nimesulide is a very controversial drug. Again, I would question why your Dr is prescribing it. However, without knowing your full med history there may be a good reason. But  judging him on his gout knowledge – I doubt it, and it's obviously not working .

    Apart from NSAIDS, the usual analgesic prescribed with AlloP is Colchicine – reported to be very effective, with diarrhoea being the main side effect and does not cause fluid retention like NSAIDS do.

    In general, you will need to pay special attention to your diet. Cutting out protein is almost a given, especially while having attacks: nuts, beans/pulses, hard cheese, tofu. Eggs and cottage cheese are probably the safest source of protein for a veggy. Drink 2-3 litres water during the day. Don't drink sodas/fizzy sweet drinks.

    #8690

    With 15 years of gout, you are riddled with uric acid crystals, and need to aim for 3 – 4 mg/dL to speed the cleansing period. After 6 months without a gout flare, and no visible signs of tophi, you can relax allopurinol dose to stay around 6. That will stop you getting flares after a few months.

    To cope with the flares, the best choice is odo's suggestion of colchicine. Ibuprofen and naproxen are other common gout pain treatments, but much will depend on your gastric tolerance.

    The exercise routine looks good, but do try to take some breaks during work hours to stretch the legs. Also remember to keep hydrated.

    If you get to the point where you simply cannot stand the pain, a steroid shot is very effective, but these also reduce the natural cortisone production, so should be used sparingly as a last resort.

    #8692
    ppkul
    Participant

    Thanks odo & GoutPal,

    Can I start Colchicine right now without prescription or doctor's advice?

    What does you suggest? and for how long?

    Thank again.

    #8693
    hansinnm
    Participant

    ppkul said:

    ….

    Can I start Colchicine right now without prescription or doctor's advice?

    … and for how long?


    ppkul, not knowing where you live, I can only tell you what one must do in the USA. Here, you have to have a doctor's prescription for Colchicine and Naproxen. However, Aleve is the same as Naproxen and is available over the counter. If you are in the USA, get a prescription for Colchicine ASAP and try Wal-Mart ($4/bottle=90pills). (A greedy Pharma [URL Pharma Inc.] has gotten a new patent and is selling it under the name of Colcrys(TM) for $5/pill. (Read up on it: https://gout-pal.com/colchi…../2009/09/)

     

     

     

    I can only give you MY experience: I take 2 colchicines (.6mg) a day and if/when I have excruciating pain I take two Naproxen a day in addition. I suggest that you get a COMPETENT RHEUMATOLOGIST to advise and monitor you.

     

    I have had gout for >25 years now and during the first 10-15 years I experienced a similar condition like yours: A gout attack every 17-18 months. Almost like clockwork. I took my colchicines and Naproxens till the attack was over and quit till next time. What I did not know, until I found GoutPal, what was happening in my body. And I assure you, my body is telling me NOW what DOCTORS, including professors, who were teaching med students/future doctors did NOT tell me: Uric acid, the culprit for gout was accumulating at unknown rates. I got the visible proof today.

     

    As far as starting right now, I would suggest you have a rheumatologist get basics of your body (blood tests for all essentials of your system) and go from there. Some medications have side effects on liver and kidney, some of the prime organs you need to control your uric acid manufacturing and elimination processes.

     

    Both, Odo and GoutPal already gave you advice what else do.

    #8716
    zip2play
    Participant

    I was prescribed AP 300mg (100 x 3) every day. I took that for 2 months. Monitoring it every 2 weeks. When UA was bellow 6, I was asked to lower the dose to 200 and take it for 4 weeks and then reduce it to 100 for 4 weeks.

    You were obviously treated by Marquis de Sade, MD or else Doctor Iman Asshole.

    That allopurinol regimen was GUARANTEED to cause your controlled gout to flare again into acute attacks.

    He should have left you on the 300 mg. FOREVER. Apparently he was trying to find exactly the right amount of allopurinol to CAUSE an attack…he did. In good treatment the goal is to PREVENT the attacks.

    Alas, ppkul, it is rare for a large tophus to resolve without either rupturing or surgical removal. The body has successfully walled this off and it is pretty much outside the effects of drugs.

    #8718
    NateA
    Participant

    Hi ppkul ~

    I've been suffering from gout for approximately 15 years now.  I wasn't diagnosed with definitive gout until the fall of 2009 after finally finding a doctor who knew how to treat gout.  I am currently taking 600mg/day of Allopurinol and have been for seven months.  As my body has been cleansing itself, I've suffered two very bad attacks in various joints (ankles, achilles, foot, wrist, fingers) and numerous minor attacks (my left knee right now).  None of these attacks, however, were or are anywhere near as bad as the attacks of the previous years.  Not even close, yet still painful and debilitating.

    The process is going to be different for everyone, but I know it's still going to take a good amount of time for the built-up UA to be cleansed from my system.  It took 15 years to build up in the joints, so I'm not expecting any six month miracles! 

    Although I'm still so hobbled right now that I really have to limit my activities, I am getting better.  Just be patient and stay the course!  Best of luck to you! 

    #8723
    ppkul
    Participant

    Hi NateA,

    How are managing the Pain part? What medication you are using?

    Thanks

    #8725
    NateA
    Participant

    Hi ppkul,

    I've found that ibuprofen does nothing for me.  Naproxen helps a little with minor attacks (I take Aleve).  During really, really bad attacks, I usually get a prescription for percocet and prednisone which works very well for me. 

    I always have some kind of pain going on.  Lately, I've just been living with it as I'm trying to cut back on the amount of pills I'm taking – for the sake of my stomache.  However, I am also dealing with a bad back and when that is hurting, I do sometimes take Tramadol.  This seems to help for my back but I've noticed that it doesn't do much for my gout pain.

    So, in short, I generally take nothing for the minor gout aches and pains, 450 mg of Aleve for moderate stuff (more for inflamation – does nothing for pain), and for the really bad attacks, I sometimes – not always – get percocet and prednisone. 

    I have tried colchicine in the past and my system did not handle it well.  Apparently this works very good for a lot of people, though.  Not necessarily for pain, but at least to stave off attacks which means you wouldn't have to deal with pain as long.  The prednisone works in this regard for me.

    (I hope this makes sense.  I only got two hours of sleep last night and I'm not thinking too well right now!)

    #8728
    ppkul
    Participant

    Today's UA reading : 4.8

    I suppose now crystals will start dissolving.

    Will my UA reading increase when the crystals start dissolving? Or will Allopurinol keep it at same level (bellow 5)?

    btw today the pain is much better Smile. Have not taken any pain killer for last 2 days.

    #8739

    ppkul said:

    Today's UA reading : 4.8

    I suppose now crystals will start dissolving.

    Will my UA reading increase when the crystals start dissolving? Or will Allopurinol keep it at same level (bellow 5)?

    btw today the pain is much better Smile. Have not taken any pain killer for last 2 days.


    Nothing is certain with gout, so it is important to get regular uric acid readings. Much depends on how much uric acid is already crystallized in your body. The only thing you can really affect is the rate at which it dissolves, and this is mostly determined by how low you get your uric acid. A few months on a higher dose of allopurinol should take your readings down further, and lower uric acid means faster reduction in crystals.

    It's a percentage game really. The lower your uric acid, the faster you get rid of crystals, and the less risk of a gout flare.

    With luck, you might just have had your last gout flare Smile, so maybe it's best to carry on as you are doing and only consider a change if you get more painful flares.

    #8744
    zip2play
    Participant

    parag,

    If you are taking 300 mg. allopurinol and getting a 4.8 uric acid, then consider this an ideal dosage and plan to continue it forever. DO NOT go off the drug or cut back to 100 mg.?

    For extreme pain I am particularly fond of colchicine. For excruciating pain that hads gone on for several days  the regimen is 2 half milligram colchincine. Then one an hour until pain relief, diarrhea, or a total of 16 pills have been taken. It seems that when the diarrhea begins the gout attack stops…there is some weird correlllation between the two.

    (If you try this method, please read up on expected side effects (horrific diarrhea) in earlier posts so you are not caught by surprise.)

    #8746
    ppkul
    Participant

    Hi,

    I think the current flare has stopped for now. I walked 1km today. 4th day without pain killer.Laugh

    After reading this forum I have really gained lot of knowledge. From all this advice, I think I will continue with 300mg AP for next 6-12 months. I will keep monitoring UA every 2 weeks. I think I will not cross UA level 5 now.

    May be after that I will try and reduce AP to 200mg for 1-2 months and monitor UA.

    I hope to have gout free months and years ahead for me and all of you.

    Parag

    #8747
    hansinnm
    Participant

    ppkul said:

    What do you suggest?


                                                                                                                                                                                                                                         DON'T EVER let it get this far!!!

    Dec. 30, 2009: Uric acid oozing out on big, right toe

    8-22-2009

      Aug. 22, 2009: Tophi with serum, skin still unbroken.  (I finally lanced it, myself.)

    UA/MSU has been coming out ever since with, interruptantly, solid tophi on the

    outside of finger (See above photo)  

              May 4, 2006: Tophi in right index finger (Skin never broken,yet)

    I have posted those photos , ONLY, for all the gouties who may live to my age (~80 years) and hope they won't let GOUT get the better/best of them (as it has of me in the last 7 months after 26 years of on/off gout attacks and an unknown amount of UA/MSU crystal built-up in my joints.)

    Here is my advice, including other members' advice given in the past:

    1) Take control of your life/gout and start to manage it!

    2) Check your SUA (Serum Uric Acid) level regularly and keep it under 6.8 mg/dL = 405µmol/L (the magic number), preferably 3-4 mg/dL!

    3) Get a COMPETANT  RHEUMATOLOGIST to assist, advise, and monitor you!

    4) Don't let your own arrogance dictate to you how to live your life, as I did.

    #8748
    vegetarianGuy
    Participant

    THANKS for posting those images Hansinnm. Really APPRECIATE IT! My heart hurt looking at those images.

    I hope some of the people here who take Gout lightly and don't manage it will take notice. The amount of ignorance and head in the sand behaviour I find online and in real world is amazing.

    Hansinnm are those foot photos Tophy/Gout induced only or do you have Diabetes too?

    #8752
    hansinnm
    Participant

    vegetarianGuy said:

    Post edited 9:58 pm – May 23, 2010 by vegetarianGuy


    Hansinnm are those foot photos Tophy/Gout induced only or do you have Diabetes too?


    No, VG. I never had any kind of diabetis. I had tophi on both feet and both hands over the past 10 years. The first time I had an open wound with UA/SMU oozing out was my left foot middle toe and when my doctor saw it he called all the other doctors in to show me/it off. However, he never started me on any management plan because a UA level of 9mg/dl was THEN not  considered serious. And he was a professor teaching at the university med school. The only thing he wanted me to do, go on an Atkins diet which as we know today isn't all that gout friendly, because it allows steaks, chrimp and other high meat proteins/UA producings foods.

    #8756

    hansinnm said:

    However, he never started me on any management plan because a UA level of 9mg/dl was THEN not  considered serious. And he was a professor teaching at the university med school. The only thing he wanted me to do, go on an Atkins diet


    I never thought I would read anything so scary. If you can't trust a med school prof, what hope is there?Cry

    #8759
    vegetarianGuy
    Participant

    hansinnm said:


    No, VG. I never had any kind of diabetis. I had tophi on both feet and both hands over the past 10 years.


    Ok thanks for clearing that. Just wanted to be clear in case that had anything to do with Diabetic foot ulcers.

    So you are in your 80s? Those injuries must hurt a lot? Can anything be done to fix it? What are the Docs saying now?

    #8774
    zip2play
    Participant

    Hans,

    The pictures inspire me to only two words: JESUS CHRIST!

    You should consider a combination of Uloric  AND probenecid and consider surgical removal of the bulk of those tophi (and repair by a plastic surgeon.)

    You will NEVER get all that urate out through your kidneys.

    (How can you resist slicing through the thin skin of your finger to let those harsh white tophi right under the skin out? I;d be at work with a sterile razor blade in minutes.)

    Are you in continuous pain with only degrees of difference?

    ***********Thank you for sharing those pictures. If they don't keep people on their meds, NOTHING will.

    #8776
    hansinnm
    Participant

    GoutPal said:
    If you cannot trust a med school prof, what hope is there?


    GoutPal, I cannot put all the blame on him. You do know how many medical professionals do not know about gout or how to treat it. As we know, now, rheumatologists are our best bet, and even they are not 100% on target.
    The first doctor (a nephrologist) diagnosed me right off the bet with gout in 1984, however, not until 1995 did he put me on Allopurinol, only to find out that I was very much allergic to it.
    The med professor, who was a geriatrist, did put me on Probenecid in 2000 and told me to lay off red meats and beer, but MY ARROGANCE laughed at him and told him that I never would do that (and DO NOT EVER SAY NEVER. Have not had any of my home brews and hard liquors, except ONCE, in 5 months now.) However, he only kept me on Probenecid for 12 months and then stopped.
    I saw a total of 6 doctors between 1984 and 2010 (not to mention the army of 8-10 when I was in the emergency/hospital with my open wound infected left big toe) and NONE of them put me on a gout-management plan or explained the seriousness of UA/MSU crystal build-up in my body.

    #8779
    hansinnm
    Participant

    vegetarianGuy said:

    Post edited 9:53 am – May 24, 2010 by vegetarianGuy


    …So you are in your 80s? Those injuries must hurt a lot? Can anything be done to fix it? What are the Docs saying now?


    …So you are in your 80s? 

    VG, I'll be 80 in November.

    …Those injuries must hurt a lot?  

    At times, in the beginning, or when an attack was going on, the pain was sometimes hard to discribe. I have been living for the last, almost 8 months, between my bed, the chair plus chair (for my legs) in front of my computer, and St. John, (not to forget my invaluable crutches.)

    … Can anything be done to fix it?

    Yes! I have done it, w ith the help of a few friends.

    First, I got myself a prescription for Probenecid and got the med from Canada for less than half of USA prices. My SUA levels have been fluctuating between 3.3 and 8.4 mg/dl since 2/19/2010, averaging: 5.9 mg/dl.

    Second, while I have been able to avoid any infections over the last ~5 months, by using an antibiotic cream with iodine (Povidone-Iodine Ointment 10%) till the middle of April. After that,  I have been putting pads with Manuka Honey (+15 Activity factor; the higher, the more potent) from New Zealand on all of my open wounds/UA oozing openings with an astonishing (so promised) results. Two nights ago was the first time that I did not “chain” any of the “culprits”, however, I have found out that every-so-often, closed wounds, holes, tophi can open up again to ooze out some of the stuff (I feel more like saying: some of the SHIT.)  The honey fights germs, staph, inflammations as well as heeling the skin by producing hydrogen peroxide(H2O2.)

    Third, I am in the process of establing a contact with new hospital/insurance group and a rheumatologist associated with that group.

    …What are the Docs saying now?

    Nothing.

    The first one (a Podiatrist), one week after the Dec.30, photo said 3 things: a) I don't have much time to talk to you, b) I can't prescribe that med (Probenecid), c) get Medicaire insurance. He did give me a 30 day prescription for Colchicine, though, and squeezed the living daylight out of my toes and put a bandage with antibiotic cream on them.

    The second one (an Internal Med.) talked to me for 10 minutes, never looked at any of my tophi/wounds, but did give me the requested prescription for Probenecid with 3 refills (all of which the Canadian pharmacy sold/sent me in ONE  shipment.)

    #8786
    hansinnm
    Participant

    zip2play said:

    Post edited 5:59 pm – May 24, 2010 by zip2play


    Hans,

    The pictures inspire me to only two words: JESUS CHRIST!

    (How can you resist slicing through the thin skin of your finger to let those harsh white tophi right under the skin out? I;d be at work with a sterile razor blade in minutes.)

    Are you in continuous pain with only degrees of difference?


    The pictures inspire me to only two words: JESUS CHRIST!

    There is no JESUS CHRIST here today to perform the miraculous healing of the GOUTIES.

    (How can you resist slicing through the thin skin of your finger to let those harsh white tophi right under the skin out? I’d be at work with a sterile razor blade in minutes.) 

    I have lanced two fingers a couple of times, but I have not yet reached the stage of self-mutilation.

    Are you in continuous pain with only degrees of difference?

    No, I have mostly passed the painful stages.

    #8798
    zip2play
    Participant

    Hans,

    Have you considered adding Uloric to your probenecid regimen.

    Alas, I realize that you, like may of us, have an issue with high pricing for these new patent meds. I could not afford a lifetime of Ulroric (at an average price of $168 a month.Yell)

    Have you ever rechallenged yourself with allopurinol, in the hope that your first failed attempt was a fluke?

    Does a Canadian pharmacy beat Wallmart or Target pricing at $10 for a 3 month supply of probenecid?

    #8849
    ppkul
    Participant

    Just as I was thinking that this gout episode is over (after 2 and half month) for now, my right knee has doubled its size. Can not bend it at all. Can not walk few steps Cry

    So another 1-2 weeks “house arrest” is confirmed Laugh

    300 mg AP to continue (last week SUA was 4.8). Will try to avoid any pain killer.

    #8850
    hansinnm
    Participant

    zip2play said:

    Hans,

    Have you considered adding Uloric to your probenecid regimen.

    Yes, I have, but NO.

    Alas, I realize that you, like may of us, have an issue with high pricing for these new patent meds. I could not afford a lifetime of Ulroric (at an average price of $168 a month.Yell)

    That's for damn sure.

    Have you ever rechallenged yourself with allopurinol, in the hope that your first failed attempt was a fluke?

    No. However, I have an appointment with a rheumatologist 7/1/10 and I'll see where we go from there.

    Does a Canadian pharmacy beat Wallmart or Target pricing at $10 for a 3 month supply of probenecid?

    By a mile. More than 50% less. Besides, all US pharmas, including Walmart, charge >$125 plus tax for 200 pills. I got 400 for $129, including S/H.


    #8851
    zip2play
    Participant

    Does a Canadian pharmacy beat Wallmart or Target pricing at $10 for a 3 month supply of probenecid?

    By a mile. More than 50% less. Besides, all US pharmas, including Walmart, charge >$125 plus tax for 200 pills. I got 400 for $129, including S/H.

    Well blow me down. All this while I was proceeding under the misapprehension that probenecid was one of those cheapy formulary drugs that everyone was discounting, like allopurinol (at $3 a month) but it's NOT. Best I could find was Costco at $40.72/100 (for the 500 mg. dose.)

    What is the name of your Canadian pharmacy and do they require an Rx. (You can PM me if you choose.)

    #8852
    vegetarianGuy
    Participant

    In central Europe I pay $30 for 30 x 300mg AlloP from Sandoz. So $360 for the years supply.

    #8854
    zip2play
    Participant

    So you are buying the old patented ZYLOPRIM. (Can I ask WHY?)

    I buy generic allopurinol and get it at any major big store pharmacy in the U.S. for $40 a year without using my insurance. ($10 for a 90 day supply of 300 mg.)

    #8855
    vegetarianGuy
    Participant

    zip2play said:

    Post edited 6:46 pm – May 28, 2010 by zip2play


    So you are buying the old patented ZYLOPRIM. (Can I ask WHY?)

    I buy generic allopurinol and get it at any major big store pharmacy in the U.S. for $40 a year without using my insurance. ($10 for a 90 day supply of 300 mg.)


    My bad as I confused my first 30 tablet pack with my current 100 tablet pack price.

    So it is actually $30 for a pack of 100 tablets. So $109 for the year instead of the $360 that I mentioned previously. Not as cheap as US though Smile Well the doc gives the prescription and the pharmacy supplies the med. The pack does not mention ZYLOPRIM any where.

    Wiki says-

    Sandoz is the generic drug subsidiary of Novartis, a multinational pharmaceutical company. The company develops, manufactures and markets off-patent medicines as well as pharmaceutical and biotechnological active ingredients.

    #8859
    Utubelite
    Participant

    zip2play said:

    Post edited 6:46 pm – May 28, 2010 by zip2play


    So you are buying the old patented ZYLOPRIM. (Can I ask WHY?)

    I buy generic allopurinol and get it at any major big store pharmacy in the U.S. for $40 a year without using my insurance. ($10 for a 90 day supply of 300 mg.)


    My doctor is smart in that way..he gave me 600 mg prescription and told me to take only 300 mg…so, 3 motnhs supply I pay $ 10, which works for 6 months at 300 mg dose. So, it is $ 20 a year… I am advanced for 1 year dose at this time. The medication is very cheap, the pain is not. I wish the gout pain was also that easy on pain level like Allop is on pricing levelLaughLaugh

    By the way I celebrated my Goutaversary 2 days back…I got it May 26th 2009…

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