Keith’s GoutPal Story 2020 Forums Please Help My Gout! Its gettting worse and i don't think i ever live without it

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  • #19477
    Gout Boy
    Participant

    Sigh so hear a story. I’ve been reading everywhere on the web and some people have attacks like once a year and i’m starting to get really jealous. I tend to get attacks at least once a month and had them since I turn 15. I admit I was a big kid and slightly overweight 85kg, however since 17 and onwards the attacks have been getting worse and worse and it seems like i’m bed ridden like 1/3 of the year now. Tried dieting, exercising been on a combination of colchicine, allupurinol. and indochine however it seems like nothing works. Ive been to the various doctors/specialist and some say i now have permenant arthritis. Yay go body. But its reaching a point where all i think about is the pain. Its even reached the point where all my friends don’t even visit me anymore because I’m in so much pain sometimes that all they can do is just watch. I’m even a healthier 72kg at 176cm but its getting to the point where its getting ridiculous. I had have gout since christmas and dissapeared after new years than on the 10th on jan till now still have it and that was my bday pressie for me yay for gout for the celebrations (jokes nope have not been out since I had it). I’m starting to lose hope. I’ve tried like 98% of remedy under the sun and its even making my friends and family worry now since i’ve become much more introverted very much unlike me. I havent had a drop of alcohol for 3 years and eat very minimal meat with my mom being a devout buddhist and all. Yes I know i don’t touch the tofu. But its coming to the point that i rather just chop of the feet and live my life as a cripple at least I be more mobile than what i am now. Yes some people might think i’m exaggerating but when your bed ridden for 1/3 of the year and unable to hold nothing more than a casual job because of it. It makes you bloody hell depressed (sorry aussie lingo). Can anyone help me out I’m at a breaking point here. I now just turn 27 and suffer at least 15 – 20 attacks a year and its ridiculous. Some attacks are really severe where I can’t leave the house for 2 weeks and some other attacks just last 3 days but on average i’m normally out for a week a time minimal.

    Other things i tried: i drink of bottle of cherry juice with no sugar and the likes in it. Drink between 2-3 litres of water per day. Avoid all alcohol yep checked. I’m come from a vietnamese family so most of the foods my family cooked isn’t deep friend and I don’t even have seafood. As for meats it more for flavouring in the broth than anything else and no processed junk food or meats.

    I really don’t know where else to turn too so any help will do

    #19479
    Keith Taylor
    Keymaster

    OK Gout Boy, time to stop feeling sorry for yourself, and get this fixed.

    First off, stop worrying about food. You’ve done everything you can to make your gout diet good for you. Of course, there might be some minor improvements. We can spend some time on daily eating plans if you like, but that is not important. However, don’t let your weight run away again, and keep up the exercise.

    Your gout is not a product of your diet. Unless you are exposed to environmental toxins, or take meds for other health problems, your gout is genetic.

    You have two important jobs to do, and I’m going to help you every step of the way.

    First important job is pain control. See your doctor, or pharmacist, about a pain-killer that is compatible with Indocin and colchicine. I used ibuprofen instead of Indocin, and my pain-killer was paracetamol. Best to get a gout-strength prescription from your doctor.
    At the first sign of gout – one colchicine tablet and one Indocin dose.
    Two hours later, if still painful swelling, one colchicine tablet and one pain-killer dose.
    At four hours, if still painful swelling, another Indocin dose.
    At 6 hours, another pain-killer dose.
    Repeat Indocin and pain-killer up to maximum daily dose, until pain is bearable.
    Do not stay in bed. It is important to get mobile as soon as you can. Push yourself to walk through it, and take control. The meds will help, but every word you have written tells me you’re giving up. Don’t give up! I’ll help you stop the pain returning forever, but you have to learn to control it for a few months.

    That last paragraph gives you the basics, but you have to make it yours. Indocin and ibuprofen are NSAIDs. At gout strength doses, you should definitely be able to notice a difference after 20 mins. Be mindful of the pain, and use gentle exercise and drugs to make it bearable. If Indocin is not making a difference, ask your doctor for ibuprofen, naproxen, or a different anti-inflammatory. That’s why I say ‘be mindful of your pain,’ because you are the only person who can assess which is working best for you. The same goes with the complementary pain-killer. Ask your doctor about different possible combinations until you find what works for you. Gout strength prescriptions are important – over the counter doses might help with mild gout attacks, but not a full-blown flare.

    Also, you can adjust the time between doses if you like, to make sure the maximum dose is spread through your day in a way that suits you. That applies most to the anti-inflammatories and pain-killers, however there might be a trick with colchicine that suits you. Try taking one last thing at night, then if you still pain when you wake, take another. Never more than two per day. Colchicine has no immediate effect on pain, but it does limit inflammation from getting worse. It does this by poisoning your immune system, hence the 2 a day limit. That means you should stop taking it if you have any infection, or might be exposed to infection.

    As soon as you feel better about pain control, it is vital to tackle uric acid. I cannot believe that you have written so much about your gout without mentioning your uric acid levels. You need to know your number, and we can then set targets. If you have uric acid test results available, please post them now. Otherwise, get them from your doctor as soon as you can.

    I don’t know what evidence your doctors have to suggest that you now have permanent arthritis. Obviously, I’m limited by lack of information about your medical history. All I can say for now, is that there is hope that the damage caused by uric acid crystals is not permanent. The sooner we act on uric acid control, the sooner we stop more damage, and increase the chances of full recovery.

    Remember, excess uric acid causes joint damage, and worse, every day – not just the days you are in pain. It can take many months to get uric acid under control, which is why I want you to have the confidence of effective pain control first. Once you can control pain, you can control uric acid. Then you can enjoy your thirties, get a good career, and grow old gracefully. Or disgracefully if you want – that’s your choice.

    #19480
    Keith Taylor
    Keymaster

    I’ve just reread yours and mine again, to make sure I’ve covered everything.

    You had to wait for your first post to be published, but now that is accepted, all posts that you make when you are logged in will appear immediately.

    You make some references to gout going away and coming back. It does not do that. Gout is with you every day, destroying your joints, and spreading to skin, kidneys, heart and all your organs. It does not hurt you every day, because your immune system fights it. On many days, you feel no pain, or less pain, but that is no indication of whether gout is getting better or not.

    You say that you’d rather chop your feet off. Let me tell you, that will make no difference to gout. Your knees are next. Elbows and hands follow. Eventually, all your joints are affected. If you do not make uric acid safe, then eventually, your extremities will be so damaged that amputation might well be the only medical option. Then it get’s worse. Uric acid spreads into soft tissues in the form of lumps called tophi. These grow bigger and harder. They burst through your skin. They damage your kidneys. they damage your heart. All organs are at risk.

    This happens very slowly, so you have many years to go. But each year gets worse. When we control your gout, each year gets better.

    The only way to know if gout is getting better is to have lower uric acid in your blood. Please post your test results if you have them. More important, is to realize that you have to worry about those numbers much more than you have been worrying about food.

    We can beat this, Gout Boy.

    I can show you how to work with your doctor to fix your gout. But besides that, if you’re feeling down, you have someone to share your troubles. Why not make a commitment to post every day for 30 days. After a month, I promise you, you will feel better, and you will know that 2015 is the year you control your gout completely.

    #19506
    Gout Boy
    Participant

    Thankyou keith for your concerns and I greatly appreciate it. Been trying every remedy under the sun but i’m trying not to let this thing beat me and I shall post my blood test results once I’m able to locate it. As for the tophi I think there is already a permanent lump on my big toe. Doctor told me I had to surgically remove it but there was no point in case of an attack happening again it would be worse and advised me against it not sure if its true or not but when doctors normally see it I can see a big sigh on their face. But I will keep on trying and try to figure this out, and I will try to post on this forum at least once every 30 day for an update as to the condition. Fingers crossed 2015 brings in a new start. So far at count 1 attack as of 2015. Ah i forgot to include prednisone as well as well i normally take 25mg than decrease slowly overtime as soon as I feel an attack happening. Just out of curiosity what’s your opinion on Febuxostat. Relatively new med that’s equivalent to 300mg of allupurinol or so that I read but I’m no doctor. Should I keep on taking alluprinol after the attack subsides or request febuxostat from the doctor if they approve. Going to the doctors again today to see what else they can do for me and also going to try acupuncture for the first time. Will post if it helps relieves pain or not.

    Regards Chris aka gout boy as my friends like to call me

    #19514
    Keith Taylor
    Keymaster

    It’s important to separate pain control and uric acid control.

    Pain control lets you get on with your life, if it’s done correctly. Prednisone is a steroid that will reduce inflammation. Personally, I don’t like it because of side-effects, and the fact that it knocks out some of your own natural anti-inflammatories. If it’s part of a package that works for you, then continue with it. Once you get uric acid under control, and go for six months without a flare, you won’t need pain control for gout.

    Uric acid control should be very simple, but many doctors get it wrong. The only reason for taking allopurinol is to get uric acid to safe levels. I wanted to see your results first, because there are three different scales in common use, and I don’t want to confuse you by referring to the wrong one. If you haven’t seen your doctor yet, ask him to write down what he thinks is a safe uric acid level.

    I believe, for the quickest way to get gout under control, you should aim to get uric acid as low as possible for one year, then review. That means increasing the dose to the maximum, in safe stages. The dose increases need to be controlled by liver function and kidney function tests. My tests showed no bad reaction to allopurinol, so my dose went 100, 300, 600, 900 over a two month period.

    Reading between the lines, it looks like you stopped taking allopurinol during your gout flare. This is just about the worst thing you can do. Once started, the only reason for stopping it is because of serious side-effects, or because your doctor advises it based on kidney or liver tests.

    Febuxostat is a useful alternative to gout, but should only be considered if you cannot tolerate allopurinol. Allopurinol has many decades of safe use history. The main problem with allopurinol is that it is often not prescribed properly. If dose is not sufficient to make uric acid safe, it is useless. In fact, underdosing of allopurinol is often worse than useless, because it can make gout attacks more frequent.

    I’m really pleased you are going to share daily updates. In 30 days, you’ll be your own gout expert and be well on the road to complete recovery. You might have a few attacks along the way. However if allopurinol dose is right, these become less painful and less frequent. I’m looking forward to the day when you wake up, and need to think hard before you remember when your last gout attack happened.

    #19552
    Keith Taylor
    Keymaster

    Hey Chris, I missed your reference to acupuncture earlier.

    Have you read the discussion at https://gout-pal.com/gout-pal-forum/please-help-my-gout/chinese-medicine-and-acupuncture/

    I wrote about an acupuncturist in Brisbane there. Is that near you?

    #19605
    Squilliam
    Participant

    Hey gout boy, I read your story and I totally sympathize man. Hopefully we both can live gout symptom free soon.

    So far from what I’ve read, as long as you can tolerate the medications, xanthine oxidase inhibitors appear to be a mainstay for treatment. Stopping allopurinol seemed to really illicit a very nasty flare, so i’d avoid stopping treatment unless your doctor says so. I’m taking Uloric right now if only because it didn’t turn my stools white like allopurinol.

    Best of luck to ya,

    Squilliam

    #19682
    Gout Boy
    Participant

    My tolerance towards the meds are normally quite good. I do notice that they do cause mood swings but lucky my patience and tolerance with people is quite [email protected] Unfortunately I live in Sydney, but luckily I live in Cabramatta which has accupunturist every 30m. The acupuncturist unfortunately I didn’t get to try because unfortunately the one my mom recommends is on holidays. My gout attack has subsided but feels like its going to flare up again (i feel pain twitching finger cross its just my mind missing the pain), but nothing of discomfort or painful yet. Other than that its finally good to be able to walk like a normal person again. Current routine is 300mg of allupurinol a day been 7 days since my last attack lets see how this plays out. @Squilliam cheers buddy hopefully they figure out how to cure it permanently.

    #19686
    Keith Taylor
    Keymaster

    Good to hear from you again Chris.

    Don’t confuse allopurinol with gout pain.

    You are at risk of gout flares until all the old uric acid crystals have dissolved, which might take months. If you get a flare, colchicine at the very first sign will help stop it getting worse. Anti-inflammatory will reduce swelling and give some pain relief. Compatible pain killers will make residual pain bearable, if necessary. Don’t give in to the gout pain – get a job to take your mind off it.

    The only way you can shorten the time you are at risk of gout flares is to get uric acid lower. Make sure you get regular blood tests for uric acid, kidney function, and liver function. Post your uric acid results here, and I’ll encourage you to get better quicker. Don’t bother with the liver and kidney results. I won’t understand them because I’m not a doctor. Your doctor can use them to keep you healthy.

    I’ve just been looking at some photos of Cabrammatta. Looks amazing! I saw it described as “Sydney’s culinary united nations” which reminds me of special time I spent in Hong Kong. Can we start a fund to fly me out there?? 🙂

    #19696
    Gout Boy
    Participant

    Yep my suspicion was correct. Another gout attack but this time in the right ankle. Just popped the colchicine and indocine. Hopefully it doesn’t cripple me as for the blood test I’m trying to get new results for it. Still continuing the allupurinol per day though. @Keith hahahah we see what happens

    #19852
    hawkeyez
    Participant

    I spent a couple of years taking allopurinol starting with 100mg and over a year working my way up to 400mg along with trying to tame the weekly flares with naproxen, ibuprofen, colchicine(colcrys) etc… Switched to 40mg of uloric and after 1 month went to 80mg and never had a issue since and it’s been over 3 years. My uric acid level has maintained in the 3s. I spent years doing blood work every 90 days and now I go once a year. I signed up to the uloric website for a discount and it cost me $15.00 for a 90 day supply. I know it’s doesn’t work for everybody because my buddy deals with gout and I got him on Uloric and nothing but flares for over a year he switched to allopurinol and no more gout. Just the opposite of me but uloric sure changed my life.

    #19853
    Keith Taylor
    Keymaster

    Hey, @hawkeyez really good to hear from you again. 🙂

    I’m so pleased that Uloric is giving you your Gout Freedom! You are absolutely right to point out that what works for one person, might not work for another. We all have to find our own way of controlling gout.

    A massive thank you from me, for visiting again and encouraging other gout sufferers. You are living proof that perseverance and a positive attitude are the best cure for gout!

    To everyone else:
    Uloric might be what you need.
    Allopurinol might be what you need.
    Something else might be right for you.
    Doing nothing means disaster! 😥

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