My Story about gout and stopping allopurinol

Stopping Gout Together Forums Help My Gout! The Gout Forum My Story about gout and stopping allopurinol

This topic contains 4 replies, has 3 voices, and was last updated by  nobody 1 year, 3 months ago.

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  • #4122

    Don Piega
    Participant
    Ŧallars: Ŧ -1.11
    GoutPal Carer Badge Rank: Carer


    Hello,

    I found out in March 2017 that I have gout. the past 5 years I thought I was suffering from stress fractures (I had an MRI last year) that my podiatrist ordered.

    I went to urgent care in March since I had an attack. He tested my blood and it Uric acid was 10.

    I went to my Primary Care Physician (Internist) and she prescribed me allopurinol 300 mg to start and said I will be on this pill for the rest of my life.

    So I took the allopurinol 300 mg for 2 weeks to lower my uric acid level and then I got an 2 weeks later and she prescribed me Medrol dose pack 4 mg along with Sulindac 200 mg, though she said that I must stop allopurinol while I am taking the Medrol Dose Pack.

    After the medrol dose pack I took allopurinol 300mg for 1 week and got my blood work done. She said that I was at 5 uric acid and to come back in 6 months and get blood work again.

    My whole thing is that I don’t want to take a pill for the rest of my life, I rather do it naturally (diet change, supplements, etc.) So after my test I stopped taking allopurniol and change the way I ate.

    I am drinking plenty of water (about a gallon), where before I wasn’t, I’m not eating red meat and not snacking on chips, sugar snacks, I have replaced that with nuts. In the last 2-3 months I have lost 25 lbs.

    I am still getting feelings of slight pain around the ankles/feet, its like a heat sensation, but it is manageable, where I can walk – my doctor said it might be the damage joints from the years of not taking care of it and she said to take some glucosamine supplements. But it doesnt feel like that, it feels like an attack, if I feel like it an attack is coming (had one a week ago) I will take the medrol dose pak just to be safe.

    I thought the weight loss will help since I felt that the reason why I was getting gout attacks is because of the way I ate and not drinking enough water.

    So my thing is that I want to be able to not take medication for the rest of my life. There is way too much information on the internet and I wanted to get feedback here with the experienced gout sufferers before trying anything.

    Also should I be going to a rheumatologist, instead of an internist (my primary care doctor), should I find another doctor (mine seems she doesn’t specialize on gout or know much about it)?

    Thank you any feedback would be great.

  • #4123

    nobody
    Participant
    Ŧallars: Ŧ 470.84
    GoutPal Scholar Badge Rank: Scholar

    Since you’ve gotten no answer yet, here’s my opinion:
    You’ve already tried a drug which would likely be sufficient to cure your gout. You’ve so far as I know experienced no severe side effects (were routine liver and kidney function tests carried out as is generally recommended?). So why don’t you stick to that drug until your gout is cured?
    Maybe you won’t have to take that drug for life. But you very likely are in for a world of pain if you don’t take such a drug until you are cured. What you may not realize is that for years uric acid has formed solid deposits in your body. They are not detected by blood tests but they are what causes gout and other problems. You will need get rid of them and that takes time.
    Losing weight, eating well and so forth is great. But curing gout that way is at best a slow process. You may not even know if you’re making progress because the deposits will cause frequent gout pain and erratic blood tests. It would be much easier for you to start from a clean slate after having eliminated your deposits. Then you’ll be able to quit the drug and evaluate the effect of diets and such on the amount of uric acid in your blood while remaining free from gout for a while.

  • #4146

    Keith Taylor
    Keymaster
    Ŧallars: Ŧ 1138.53
    GoutPal Scholar Badge Rank: Scholar

    Don, I hope you’ve taken to heart what nobody wrote. Because it says almost everything you need to think about.

    I say “almost” because there is something particularly important that you seem to ignore – your uric acid level.

    Gout is not about taking allopurinol every day for life. Although, that suits some gout patients. But, it is about managing uric acid, and gout symptoms. So, in my opinion, you don’t need a gout specialist. You DO need a Don specialist!

    That is someone who listens to your needs, monitors your situation, and helps you make the right choices for you. So, you’ve come to the right place.

    What’s your uric acid level, Don?


    Allopurinol and Mortality image

    “Long term high dose allopurinol may be associated with a better mortality “

  • #4170

    Don Piega
    Participant
    Ŧallars: Ŧ -1.11
    GoutPal Carer Badge Rank: Carer


    Thanks nobody for the reply. I took your advice and I went back on taking the allopurinol. Since I had this for 5 years without having the correct diagnosis, I think it is best that I get rid of the old desposits. How will I know when all the old desposits have been elminated?

    Keith – thanks for the reply as well. As a month ago I was a 5. I havent taken another blood test since the doctor told me to come back in 6 months. Should I be getting blood tests every month?

  • #4174

    nobody
    Participant
    Ŧallars: Ŧ 470.84
    GoutPal Scholar Badge Rank: Scholar

    re “How will I know when all the old desposits have been elminated?”:
    It’s guesswork. The timeframe we’re talking about is about 6 to 24 months. You need to make sure the symptoms are gone for good and, because you’ll probably get less frequent symptoms before they go away completely, you’ll only be able to tell in retrospect when they finally stopped. It’s probably best to keep taking the drug at least a few months after the symptoms have stopped completely anyway because you don’t feel every deposit.

    If everything is fine, you don’t need to have a blood test every month. But 6 months is a long time. At some point you may want to try to lower your dose for instance and at that point, you should get tested both before and a few weeks after you change the dose.

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