Dave

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  • in reply to: Is this the right way to start Allopurinol? #9189
    Dave
    Participant


    I know exactly how you feel! 4 years ago, I started suffering from gout attacks that incapacitated me for weeks. I told people id rather cut my foot off then have to endure another gout attack. Hopefully my experience to controlling my gout will provide you with some help/hope.

    My physician initially prescribed 100mg allopurinol and steroids for acute flair ups. I was under the impression that taking meds was all I needed, and my gout would just go away. Wrong! While traveling for work I woke up on a travel day with the most severe attack I ever had. I was in my hotel room not able to get out of bed because of the pain. I did travel that day and how I did is for another time.

    When I returned home, I visited my physician again and he increased the allopurinol dosage to 300mg. I also knew that I had to take control of this gout and educate myself on causes, monitoring and treatment. The first step was to identify those foods and beverages with a higher purine content and remove them from my diet. Second was to begin to monitor my UA levels from a home monitoring device. Initially I was taking samples every three to four days for the first month. All the results were placed in a spreadsheet and graphed over time.

    After two months I was encouraged to see my UA reading decline from the danger zone (7 mg/dl) into the good (5mg/dl – 6mg/dl). It should be noted that when I was initially prescribed the 100 mg of allopurinol, my Ua was 9.1 mg/dl. All was going well until one morning I woke with another attack. This one was not as severe as the previous, nevertheless discouraging that it happened. I questioned the accuracy of my testing device and set up an appointment that day to get lab values. I brough my monitor with me into the lab and had the tech use the same sample of blood for their draw to use on my device. When I received the results, I found my device was off by only .2 mg/dl.

    With the knowledge knowing my monitor was within an acceptable accuracy range, it was back to trying to understand why the recent attack happened. Could this be the crystals beginning to dissolve and getting flushed from the joints? I’ve read that this is common and is a sign you are on the way to controlling gout. I ran with that conclusion and continued on.

    Over the months I watched my UA levels decrease remarkably to at one point my UA was hovering in the 3’s. Additional lab values were taken, liver function good and my monitor still providing accurate readings. My allopurinol was reduced to 150 mgs with no remarkable increase in UA. Slowly my diet began to include some of the foods I enjoyed that had higher purine levels. Most notably was beer. The only change there was switching over to light instead of the regular lagers I enjoyed.
    There was a noticeable uptick in my UA readings after the new change in diet, although I maintained average levels in the 4’s mg/dl. At times there were spikes that increased by 1 mg/ml and I attributed that to testing of some foods that I really missed eating.

    With my UA levels safe for close to a year, I asked my Physicians’ advise on decreasing my allopurinol to 75mg. He was good with it and I’ve been dosing at 75mg for the past nine months, attack free.

    Today my UA levels are still in the safe range and although my diet has somewhat swung back to the pre attack days, it’s still just a fraction of what I used to consume. My goal is for one day to be off allopurinol but to still monitor my UA and control diet. I certainly hope my experience can be helpful and know too that all cases are not the same.

    I purchased my monitor from Amazon which they source from Canada. These are not sold in the US from my understanding. https://www.amazon.com/UASure-Uric-Acid-Meter-Sure/dp/B01LN44MKA

    Best,

    David

    in reply to: Correlation between Gout and PVNS #8966
    Dave
    Participant

    Keith,

    The last two blood tests I had within the last year, both values for UA were within .5 mg/dL of my home meter. I feel confident that my meter is providing accurate levels. All my readings are logged in Excel so I can see at a glance what the average is and the trending. I have cut back my Allo by 50% (150 mg) which resulted in a small increase in the trend line but is now holding steady at 4.2. Liver function tests also are within normal ranges. My goal is to get my Allo down to 75 mg and UA no greater then 5.5 mg/dL.

    AS for the PVNS, I do have an appointment this Thursday with my Ortho MD to get his thoughts and best if any treatment plan. Since I also live very close to the Mayo Clinic in Rochester, MN, it’s highly likely I’ll get an appointment there since they specialize in rare conditions like PVNS. I’l be sure to mention a consult with a rheumatologist. I’m highly suspicious that this is gout and not PVNS although with my UA being in check for over a year, who knows.

    in reply to: Painful feet! Is it Gouty Arthritis? #6987
    Dave
    Participant

    Ball of foot gout pain and swelling

    Been controlling my gout daily with 300 mg allopurinol, cherry complex and uric acid support supplements along with major diet changes. I’ve been monitoring my UA weekly with a monitor for the past four months and I’m averaging 3.9 mg/dl.

    All has been going well until a few days ago when the ball of my right foot has all the signs and symptoms of a acute gout attack. With my UA levels controlled and low, I’m thinking this may be the crystals breaking down from the metatarsal joints.

    Right now I’m treating with prednisone to relieve the inflammation, OTC pain control and increasing my H2O intake.

    This may be totally unrelated to UA and something along the lines of metatarsalsia which I’ll have to get a consult from a podiatrist.

    My inquire is to see if anyone else has experienced this same condition and what if any the findings were. Additionally I’m wanting to reduce the dosage of the allopurinol and at some point not take it anymore. This begs the question: how does one know when this is?

    Thank you.

    David

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