I made it

This topic contains 9 replies, has 7 voices, and was last updated by  GoutPal HelpDesk 3 years, 3 months ago.

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  • #3400

    Joe
    Participant

    I made it! I got my lab results back from September 2nd and my Uric Acid level was 4.8 This made me smile 🙂
    All my other levels are within the normal range. They also tested my liver because uloric might affect it. Also, in the normal.
    I have been on uloric since May 17 (about 3 – 1/2 months)  One pill per day 40 mg. My first level was 15.3 Yes 15.3 but now it's 4.8 and of course we know the goal is to get below 6.0. I feel good.
    I asked the doctor if that was the highest he had seen (15.3) and that I had anxiety over it. He said that he had seen some 18's and 19's but those were really severe cases. This eased my mind to know that I wasn't the highest level ever.

    In addition to uloric which is controlling the hyperucemia, I take one 0.6mg colchicine per day in hopes of preventing inflamation/pain of toe, ankle, sole of foot and knee. Also, I have one bottle of prednisone pills that I will only use in case of a major gout flare that is painful.
    I still haven't had a gout flare since May 7. I have had three 'twinge' feelings and then I take two or three colchicines in a day to combat that.

     I exercise at least five times per week (bicycling) I'll have to find something else once winter comes. My weight is at 170. Height still 5' 11″
     I cut down drinking. I hardly ever drink beer anymore which of course I miss because I love the flavor and effects but interestingly I miss it a little bit less each week. When, I do choose to drink alchohol I just drink one or two beers or hard liqour drinks but this is infrequently as I go two or three weeks without.
     I try to eat proper portions. Before it was mostly meat and few vegetables, now it's the other way around.

    The doctor said that a healthy live style will only lower the uric acid levels 1 or 2 points but in addittion it makes you feel better in general. So, this is a great success story so far in my battle against this incureable disease (hyperucemia/Gout)  Just wanted to share and give a story of how it can get better.
    Joe

    One question I forgot to ask was since the drugs uloric and allopurinol prevent the purines in your blood from being turned into uric acid, what does your body do with all the extra purines?  It seems like the body was turning the purines into uric acid for a reason, right? Now wouldn't the body have too much purines in the blood? Does anybody know about that.

    Below is my story that I posted before.

    Circa 2006 I have never heard of gout. I stub my toe and it hurts way more than it should. 2007 – My toe hurts an insane amount and is large and red. I figured that I broke it and now it regrew the bone in a wrong way. People are amazed at the size of my toe. 2008 – My left ankle swells up and I don't remember hurting it but I figure I must have. I have severe pain and can barely walk for about one week. 2009 – same thing happens but this time on my right ankle and six months later on my left ankle again. I know I haven't sprained my ankles are these times unless maybe it happened when I was drunk. 2010 – My toe hurts again, I had written it off as chronic painful toe from not having got medical attention. But now a 'blister' appears on it and I lance it and white chalky substance comes out. I figure it's soft bone or calcium from the broken bone healing improperly. It bleeds and oozes out this other substance for a week.

    I decide to go to a doctor on March 29. I hadn't been to a doctor in 20 years. (I'm 42 now). As the doctor is looking at my toe she thinks it's an infection. I then tell her about the white chalky substance and she say's 'Oh, you have gout, a really bad case.” And brings in another doctor to look at it and he says they should take a picture of it for medical journals. (but don't)
     The doctors confer and decide Indocmethycine and some anti-biotic. And some blood tests including Uric Acid test. And she says that later I will have to go on a “manager” drug called Allopurinol for the rest of my life. I leave.

    The indomethycine does nothing. A few days later in the mail I get the results of the blood tests. A bunch of big medical words  along with 'Latest Reference Range' with my numbers. When my number doesn't fall with in the range it has (L) for (H) Things like RDW 10.9 (L) should be at least 11.5 and MPV 6.4 (L) should be at least 6.5. Everything is in the range or close to it until I get down to the very last one called Urc Acid. the range was 4.8 – 8.7 My number was 15.3 (HH) and not one H but two next to it. The note said 'Uric Acid is high. Please schedule a follow up appointment once the flare has resovled.

     So, I went in again on April 12 and the doctor apologized to me that the indomethycine didn't work at all. The doctor also called in another doctor again to look at my big toe. This doctor comes in and says, “Came to look at your famous toe.” They confer and  she prescribes colchecine and prednisone. I ask what are they supposed to do. (Since the other drugs they gave me did nothing, this time I asked what are the expected results from these new drugs?) They said the colchecine should “melt” the tophi. LOL
     I tell my doctor after the other one leaves that I feel depressed that I have a huge toe and gout an incurable disease and that you think it's a freak case that even doctors are taken aback by. She appologizes for that. So she gives me this presciption and makes an appointment for me with a rhuematoligist for April 26. She says it will be a “team effort” to treat gout.  I ask what about the Allopurinol? She says  that she's not going to prescribe it untill the flare is resolved. So, I take the prescriptions and leave. (only 1 day of colchecine) and 4 days worth of prednisone. The prednisone was awesome it took pain away in just a few hours and I could walk fairly comfortably.

    I get my first medical bill for my first visit. $212 + the drugs cost 50.
    2nd visit. $277 + drugs 30

    I postpone my rheumatolgist appointment to May 6th so that I can apply for health insurance but am denied coverage. Why? Because I have gout. That's right. I was going to pay 130 dollars a month and the health insurance company says, “Reason for denying coverage – Recent diagnosis of gout' Unbelievable.

    Then on April 23 my left anke swelled up my left foot arch and for the first time ever my left knee swelled up. Oh the pain, I couldn't walk with out crutches or a cane and putting socks on and off was a time consuming pain festival.

    By May 6 I barely ambulatory but make it to the rheaumatolgist. He also thinks my toe is huge but since my knee is the thing preventing me from walking he drains it and injects prednisone. He asks me what my Uric Acid level was, When I tell him 15.3 he is taken aback. He asks if I am taking anything for the hyperucmia. I say no I want to get on that today. He says he will prescribe Uloric which I wanted to go on for two weeks prior but the day before my appointment I found out it from this website that it cost 200 dollars a month which I can't afford.

     So, I say uloric is super expensive, I have no insurance and unemployed so what about Allopurinol. The doctor says that won't lower my lever to below 6.0 I say I simply can't pay for it. He says there are help programs including the drug company could help you. I say Exactly what does 'help' mean? and he said they would give you free medication. Well I can afford free so I allow him to prescribe me uloric instead of allopurinol. He also gives me free 30 pills of 40mg and seven pills of 80mg gratis.

    He also prescribed colchecine twice a day. 0.6mg
    I had written a list of things to ask since I wanted to get my money's worth and didn't want to forget. I asked about black cherry extract pills and he scoffed at that and also gluecosimine was scoffed at. I asked about ibuprofen which I was taking over the counter. It says on the bottle to consult a physician if you use for more than 10 days in a row. Well ok I'm at a physicans office so I ask and he seemed like he could care less about ibuprofen and says that I could take it for more than 10 days in a row with no problems.

    One day later after my knee was drained and injected with prednisone I felt very well and could walk around fine. I felt like an athlete getting my knee drained.

    I had to apply to drug company that makes the uloric to get on a program called Help at Hand. After a few hassels on incomplete paper work went back and forth I felt sad because I had also recently been rejected by health insurance, state help from two programs and financial help from the clinic I went to. So I had all these rejections and dreaded getting the mail for fear of another rejection or medical bill.

    I did get the bill from the rheumatologist $577
    After not hearing back from the drug company of uloric which is called Takeda. I had run out of pills and filled my prescription at Target. It cost $180 but I had a 20 dollar coupon. I chatted with the pharmasist and asked her how much 300mg allopurinol would cost for 30 pills and she said $4 dollars. I decided I was going to use that. But I didn't want to go to the doctor and spend $250 dollars just to go get a prescription. But I needed to because I can't pay $180 a month for uloric.

    So I was going to go to the doctor on July 19 when my “expensive” bottle of uloric runs out. Last night I went out to the mailbox and reach in and pull out a back and it rattles. The sender is just an address. I open it up and 3 bottles of uloric comes out! 90 pills. With just a fact sheet about the drug with no letter saying I was accpepted to the help at hand program, but obviously I was! There was a bill inside to me and it said amount due $0.00

    So FINALLY something good happened to me concerning health/medicine.

    Other good things happened along the way. I am 5'11″ and was 195 lbs on March 22. While sick from the gout flares I began losing weight. I am eating properly. I very rarely eat meat now but most importantly I eat the suggested serving size instead of as much as I feel like.
     I used to drink to intoxication once a week. I stopped drinking for 75 straight days. Now I drink about twice a month and not nessacarily to intoxication. Last nite for instance I sat out on my deck and drank one beer. (then went and got the mail and got my free meds. What a great day!)

    I took up bicycling I went from 195 lbs to 165. since March 22.

    I am going to take the uloric that I got for free and then go and get another uric acid level test to see how much lower it is.
    I haven't had a gout flare since May 7.
    My big toe is getting smaller and the two Tophi's on it have stopped oozing MSU chalk and are shrinking away.

    Can anyone top a Uric Acid level of 15.3 ? Is that the highest you have heard of? I don't want to be the guy with the highest recorded level.

    I'm glad I found this website. Thanks for it and all the valuable information and will let you know if the uloric is working when I go for my next UA test.

    Joe

    #9912

    limpy
    Participant

    Joe, Glad to hear your doing better. I started Allop May 22nd and now I feel like I've never had Gout. I went for a 1 1/2 mile walk today with no pain. I haven't been able to do that for almost a year. LIMPY

    #9914

    Joe
    Participant

    Limpy, thanks. I know how you feel. I still know I have gout when I have a small twinge feeling but those are rare. But, I can't believe that it was only in May that it took me 10 minutes to put a sock on and it caused so much pain it was excruciating and I could not get around except with crutches. I live in Minnesota so in winter I will have to stop bicycling and I think in it's place I will go out for walks in the ice and snow for my exercise. You'll be walking in the snow too in Iowa. Here's to hoping to no more crippling flares.

    #9921

    azasadny
    Participant

    Joe,

      Congratulations on the progress you've made and the low SUA! I've been on Allupurinol for 2 weeks and on 9/23 I go in for lab work and Dr visit. We'll check the SUA and my liver enzymes. I'm not expecting significant results like you've had yet, but I can always hope!!

    #9927

    Joe said:

    One question I forgot to ask was since the drugs uloric and allopurinol prevent the purines in your blood from being turned into uric acid, what does your body do with all the extra purines?  It seems like the body was turning the purines into uric acid for a reason, right? Now wouldn't the body have too much purines in the blood? Does anybody know about that.


    Joe, I  love that question.

    I do not have a clue how to answer it, but that just makes me love the question even more.

    Once I've worked it out, I'll let you know, but it won't be today – I'm planning my night of celebtation in honor of your latest results. LaughLaughLaugh

    #9932

    zip2play
    Participant

    I occasionally have it very clear in my miind but it comes and goes…I'll give it a first stab, and I say FIRST becasuse I have had several beers today.

    A couple factors come into play;

    Hypoxanthine is a chemical precursor to xanthine, the most common purine. Allopurinol is identical to hyproxanthine but for the placement of one atom. All these are acted upon by xanthine oxidase and a load of the fake hypoxanthine, allopurinol, stops the oxidation of the REAL hypoxanthine to xanthine and xanthine to uric acid. All are dumped by the kidneys but the kidneys much more readily dump xanthine and hypoxanthine than uric acid which is reabsorbed. On top of that allopurinol gets oxidized by xanthine oxidase to basically alloxanthine (aka oxypurinol) and AGAIN uses up more xanthine oxidase.

    The second effect is that when xanthine and hypoxanthine are alllowed to build up the body uses the excess to more readily build nucleic acid from them thus in effect recycling them.

    So more xanthine and hypoxanthine>>>more excretion and more reutilization. 

    That's why allopurinol is just so devilishly clever. It fakes out the body's bolluxed up inclination to turn all these valuable chemicals into uric acid.

    I will look this over tomorrow and if I need to “refresh it” in the light of total sobriety, I will.Smile

    #9933

    trev
    Participant

    Interesting ,Zip- I wish I really understood the detail 😉

    A while back, you posted a list of UL Meds and mine Sulfinpyrazone was 2nd last in favour listing. Why was this? -and can you expand on it's action too, please.[Maybe a new thread?]

    It seems very effective at lowering SUA to the right ball park [3-4mg/dl in my case at moderate dose [200mg]. .

    I started it a few days after the AP rebound attack, with little further flaring

    Did 4 miles walk yesterday- with just a mild soreness.

    Apart from my liver feeling it a bit [Blilirubin drifting up slowly] and the  skin sensitivity mentioned elsewhere, it seems less intrusive than AlloP- which I did feel rather wierd on, tbh.

    #9941

    zip2play
    Participant

    If I recall correctly I listed allopurionol, febuxostat, probenecid, sulfinpyrazone, and benzbromarone in that order? Benzbromarone, though a good drug was listed last because it is not allowed to be sold in the U.S. Allopurinol and febuxostat are losted first and second becasue of the relative lack of side effects, expecially kidney stones.

    Of the two uricosurics, I put probenecid first because it seems to be more often prescribed but since both have side effects:

    Common side effects include nausea, skin rash, stomach upset, or headaches.

    While the skin rash sometimes can be serious, other side effects usually are not serious and may go away as your body gets used to the medicine. If any side effects continue to bother you, contact your doctor.

    It would seem the choice should be made (price being equal) based on how your stomach and head handle the drugs. I think sulfinpyrazone has the reputation of being harder on the stomach. Of course, you know excess water is advisable to avoid kidney stones precipitating from your urate rich urine.

    How it works? The kidney is extremely compicated involving millions of bloodstream loops in each kidney that pass out almost all chemicals in the descending loop and resorb most in the ascending loop of each single nephron. The chemistry and competition of all this is staggeringly complicated. Best I can say is that I think both sulfinpyrazone and probenecid compete with uric acid in the reabsorption phase and thus more urate is dumped in the urine. Try to keep an alkaline urine while using uricosurics. I guess some litmus paper might be good enough (not sure how accurate in a very narrow range  but I know it's cheap.)

    Here's a decent comparison of the two:

    http://books.google.com/books?…..mp;f=false

    If that doesn't take you directly to the page, it's page 600 item 10…should be easy to select. The whole page is a good read.

    #9945

    trev
    Participant

    Ta Zip! A short but useful expo. I will comment on my own BP thread.

    #22531

    GoutPal HelpDesk
    Moderator

    @joe (in his Original Post) said: “They also tested my liver because uloric might affect it.”

    Joe, I hope everything continues OK for you. Liver problems with Uloric are rare, from the data I’ve seen. But, it’s good to be aware and play safe with annual liver function tests (more frequent when Uloric dose changes).

    Anyway, we’re reviewing this at: Improving Uloric Liver Warnings Guidelines for Gout Patients. I hope people interested in liver function and Uloric will join in that discussion.

    For other gouty discussions, please post your questions, experiences, and opinions in the new gout forum.

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