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  • in reply to: Uloric and Length of Time for Crystals to Disappear #16206
    davidk
    Participant

    2 weeks after I started on Uloric, my UA dropped from 11 to below 5. I had flare ups every few weeks for 6 more months before they stopped. I’ve been attack free for 3 years and my UA runs below 5. I take 40 mg uloric daily.

    in reply to: Time for allupurinol to start working #10287
    davidk
    Participant

    jonpayson- hang in there.  I asked the same question on a post about 2 months ago. I had been on uloric for 6 months, my UA levels were below 5 and I was still having flare ups every 4-6 weeks.  I was at my wits end.  Now, I have not had a flare up in 10 weeks and I feel great. I'm not all the way back yet,  but pretty close. I couldn't walk without a cane for 6 months, not I kick the soccer ball around with my 10 year old son, run around with him, hiked a bit yesterday, and feel great.

    how long does it take? no one knows- it seems a lot of people get better around the 2-3 month mark. I took longer, but I have reduced kidney function.  If you had gout longer and more severe, you have more crystals to clear out and it takes longer. the lower you can safely get your UA, the quicker you will flush out old crystal- drink plenty of water.   Prednisone and other prophalactics such as colchicine help prevent flare ups.  At the first sign of a flare up, get on whatever pain and inflammation drugs you use right away.

    Hang in there- it does eventually get better- but the time frame depends on the person.

    in reply to: Anyone else here take vitamins? #10286
    davidk
    Participant

    I don't recall the link, but I read a study that showed that daily vit c reduced UA levels by up to .5.  Not a lot of movement, but seems to have some effect.  I take vit c for that reason and just general health.

    in reply to: UA below 6 for over 6 months and still having flare ups #9603
    davidk
    Participant

    Little update.  My toes are feeling a lot better today after only 3-4 days since the flare up. I think hitting it right way with colchicine and prednisone seems to make a big difference. I hope maybe the flare ups are becoming less severe as time goes on. I read quite a few of Nate's posts and found someone elses that took longer than 6 months to get better. So, I have some renewed hope that maybe in a few more months I will have less frequent flare ups.  I didn't need my cane today, so that's a good sign.

    As a side note, my last name is Kane and my wife's maiden name is Walker, so I guess it was inevitable.  I should have named my first child Wheelchair.  Laugh  

    in reply to: 24 Hour urine test for UA levels #9597
    davidk
    Participant

    Hi Zip. I'll check next visit (in about a month). I don't recall the number, but it was a little less than 50% of normal.

    in reply to: 24 Hour urine test for UA levels #9590
    davidk
    Participant

    Hi Nate- this is an old post of yours, but I wanted to share a couple comments.

    First thanks for all your posts and your blogs. I have been on Uloric for over 6 months, UA has been below 5, still having flare ups.  Your posts have given me renewed hope that perhaps a few more months and things will get better.  Thanks for sharing and I hope you can ski this winter.  That's one of my hopes/ goals too.  I've been inactive now for about 9 months and it's annoying.

    I saw you only have one kidney and have been told it does the work of two.  I see you also questioned the purpose of a 24 hour urine test.  I had a kidney transplant 16 years ago, so only have one functioning kidney. I'm a bit concerned for you that perhaps you have not been properly informed about your kidney function.  But then, I think I saw that you have various lab work done regularly, so maybe the doctors are on top of your kidney function?

    A 24 hour urine test (I've had several) measures kidney function among other things.  Although my one kidney supposedly does the work of two, I actually only have about 40% to 50% kidney function– keep in mind, my one kidney is functioning just fine and as well as it ever has.  you can go down to 10% kidney function before needing dialysis or transplant, but that does not mean 11% is just fine.  So, I can only take .3 mg of colchicine per day and various other limitations.  The reduced kidney function limits my ability to excrete UA and is the sole reason I have gout.

    I suspect you could have reduced kidney function (perhaps not as low as mine because you have your own kidney from birth which should function better than a transplant).  If you are not seeing a good nephrologist, I think maybe you ought to consider at least one round of testing- creatine levels, bun levels, maybe 24 hour creatinine clearance, etc.  I wonder if your one kidney may well have more to do with your gout than you realize.

    in reply to: UA below 6 for over 6 months and still having flare ups #9589
    davidk
    Participant

    love the picture of the shoes. I needed a good laugh. I 'll try to figure out how to find Nate's posts.

    After posting, I read an article that GP posted. It said to use prophalactic colchicine for 3-6 months while clearing out deposits and if you have reduced kidney function or years of deposits possibly longer than the 3-6 months. That's the first I read about it maybe taking longer than 6 months, so that gives me a bit of renewed hope.  I am also going to start taking prophalactice colchicine for a couple months and see if I can avoid a flare up.

    As a side note, I have found NewBalance brand walking/cross train shoes in the wide width to be pretty comfortable; has more toe area than most.  For work/church shoes, I have a pair of Nunn Bush comfort gel black shoes that are also wide, soft in the toe, and comfortable.  During mild flare ups, I can still get the New Balance on if I loosen them. Medium flare ups I can still get into the Nunn Bush. Severe flare ups, forget about it; that's a stay home day.

    in reply to: Allo vs. Uloric #9583
    davidk
    Participant

    I agree w/ Zip.  Allo is cheaper and been around a lot longer.  the efficacy of each seems to be about the same.  sounds like Allo is getting your UA down, so no need to try Uloric (more expensive and could have side effects yet unknown).

    I was a rare one who had side effects to Allo (dizziness, light headed, inability to think clearly), so I had to use Uloric.  Fortunately, it works well for me (UA below 5 for 6 months now) and I have pretty good insurance, so my portion is about $500 per year; expensive, but no choice.

    For you and most others, I think allo is the better way to go.  Only use Uloric if you cant take allo.  (I've also never heard of the symptoms you describe as being related to either allo or uloric).

    in reply to: Allopuinal or Urolic? #8969
    davidk
    Participant

    I agree with Zip's first comment. Take Allop unless for some reason you cant.  I tried Allopurinol, was in the 1% that could not tolerate it.  Started on Uloric.  UA went from 9 down to below 5 within weeks and has remained there for 5 months.  I am tolerating the Uloric perfectly with no side effects that I know of.  (but who knows, it's a very new drug, so I could sprout a 3rd arm at some point) (oh and the side effect of the painful $120 copay every 3 months).

    Interestingly, this week my rheumatologist suggested taking my Uloric back down from 80 to 40 because I am running at about 4.3 (I was below 5 on 40 mg too).  I've still had 3 flare ups in the last 2 months, so he thinks maybe we're running so low that it might be causing fluctuations in UA which can cause flare ups.  Not sure any of that seems logical to me, but I'm going to do what he says anyway because a) I think I'll stay below 5 even on 40 mg, b) I had a kidney transplant 15 years ago and have less than 50% kidney function, so any time I can reduce a med in my system, that's a good thing, c) my rheumatologist seems to know what he is talking about regarding gout, so I'll give him the benefit of the doubt.  For me I've found 2 of my 3 flare ups seem to have correlated with a very small amount of shell fish intake, so I'm staying completely off that. Plus, he suggested next flare up, immediately take 30 mg of prednisone for a few days and try to stop it before it gets too bad, so hopefully we're going to find a way to control it while we keep flushing out the UA deposits.

    in reply to: Don’t Know What Else To Do……HELP! #8968
    davidk
    Participant

    gout gal-  the specialist you want to see is a rheumatologist.

    in reply to: Athlete with 3 months of constant attacks #8967
    davidk
    Participant

    Hi Jeff.  I take 80 mg Uloric because I had side effects from Allopurinol.  For me, it was extreme dizziness and lightheadedness. I couldn't work.  That said, Allopurionol side effects are extremely rare and it is much less expensive than Uloric and it has been around for a couple decades.  Uloric is so new, no one can really say yet what side effects it might end up having. So, if you can try Allopurinol, it might be worth it. But if money's not a big issue, maybe you stick with Uloric till you get through the worst of it, then talk to your rheumatologist about it.

    I also take colchicine daily, but I cannot tolerate more than 1/2 pill once per day.  (.3 mg).  Anything more than that and I have to just stay home by the toilet and my stomach hurts so bad I can't hardly function, and really bad heartburn. I have learned to take it with food.  Any chance the “kidney” pain is actually heart burn or other digestive side effect from colchicine?  When I get real bad heartburn, it also causes significant low back pain.

    my attacks are solely in both my big toes. When times are good, I can walk pretty normally, but that last part of the step is what really hurts. During attacks, I walk on my heel with a cane.

    I'm 5 months on Uloric now.  My UA levels went from about 9 to below 5.  Number of attacks is less, but not gone yet.  It takes at least months to clear out all the old UA deposits in the joints.  I was told 6 which is one more month for me, but who knows.  I've had 3 attacks in the last 2 months, each lasts about 10 days, so 50% of the time I can walk– not great, but prior to Uloric, I went about 4 months walking with a cane.  Actually, I should say, prior to finding gout-pal.com last December, I had been 4 months walking with a cane.   Great group of guys on this site; glad you found it.  As always, I'm super grateful to GP for hosting it and for everyone that posts.

    in reply to: was it the crab or orange roughy that did me in? #8453
    davidk
    Participant

    thanks all. As always, I appreciate all the advice and shared experience.  I know I've had two occasions in the past where a half dozen shrimp did me in, so it seems that I'm extremely sensitive to the shellfish.  I'll stay completely away from shellfish for a long time, but maybe try skinless fish once in a while.  It's been a week tomorrow since the flare up and I am doing a lot better.  No cane.  Maybe back in good shape in another day or two.  A week of pain and limping for about 10 bites of crab appetizer…..   won't be trying that one again.Wink

    in reply to: why do I have pain in toe at the end of my step? #8237
    davidk
    Participant

    Thanks all.  I appreciate the help and am finding gradual improvement.  I went to a massage therapist for low back pain related to the limping from gout and she said that 4 months on a cane can cause the muscles and tendons to atrophy some. She worked out some of the muscles in my foot and I found that helped too.  So, perhaps some of the pain is still in the joint and some is surrounding muscles and tendons.  Either way, it seems to be gradually getting better.

    in reply to: foot pain #8108
    davidk
    Participant

    Hi John.  Not sure how long you had gout before getting on Allopurinol and getting your levels below 6 a few months ago, but it can take many months to clear everything out.  I've been below 6 for 2.5 months now, but a few weeks ago, my rheumatologist upped my dose of Uloric (I take Uloric because I can't take Allopurinol, but the concepts are the same).  My levels had actually been below 5 and I thought fine, but he said he wanted me even lower because I was still having flare ups (and I have a kidney transplant so my body has a really hard time excreting UA).  He also has me taking 5 mg prednisone and .3 mg colchicine once or twice a day.  I go back this week (or next?) to see what my UA levels are now, but I have not had any more flare ups since increasing the dosage and am doing better than in months.

    So, not sure if too much of htis is similar to you, but a) you can still get flare ups while clearing out old crystals; b) it can take months depending on how long you were building up UA and how low you get your UA, etc; c) ask your rheumatologist if you should be increasing your allopurinol or supplementing with any nsaids or colchicine or anything.

    One other note; I find drinking plenty of water is critical.   We all know that, but I really find a difference if I slack off a little bit. I assume its because it is so critical to be able to clear out the crystals being broken down. 

    in reply to: Taking Allopurinol but Uric Acid levels going up again! #8099
    davidk
    Participant

    are you drinking lots of water?  as I understand it alcohol is a diuretic, so you may be getting dehydrated which will cause UA to go up.

    in reply to: My first major gout attack #8026
    davidk
    Participant

    DinoSS100 said:

    I'm wondering if I should make an appointment with a rheumatologist at this point?


    Yes, Yes, and Yes.   I feel your pain. I was misdiagnosed for years and then have been unable to walk without a cane for 4 months. The inability to exercise and live my life is horrible. Finally got proper diagnosis and treatment (thanks to gout-pal) and shed the cane a few weeks ago and am doing much better.

    Yes, call a rheumatologist right away and get proper diagnosis and treatment.  You need to get your UA measured and go from there.  Keep posting, the gurus on this web site know more about gout than most doctors.

    There is hope and you can beat this.  You need gout-pal advise and a good rheumatologist.

    in reply to: I made it to 82 days without a major attack #8022
    davidk
    Participant

    NateA said:

      I'm scratching my head over what has caused this.  I am back on 600mg of Allo per day after a discussion with my doctor late last week. 


    Did the increased dosage cause a sudden drop in UA which we know can cause flare ups?

    in reply to: Side Effect of Allopurinol? #8001
    davidk
    Participant

    I tried 300 mg Allopurinol and was so dizzy and foggy headed that I could not concentrate or do my job. I had to give up on it after 2 weeks.  Months later I switched to Uloric and have been doing great.  I'm on several other meds though and everyone is different, so its hard to say.  Sounds like some people have had good luck with the dizziness going away after a while.  If it's just when he gets up or such, probably worth giving it a little longer to see what happens.  Uloric works for me, but it's a newer (less tried and proven) and much more expensive drug, so if you can make Allopurinol work that's probably the best bet.

    in reply to: Any alternatives to allopurinol? #7962
    davidk
    Participant

    originallyyours said:

    is there any alternitive to allopurinol

    my doctor is a idiot


    I take “uloric” because I cannot take allopurinol. You can read about it at uloric.com.   However, it is a new drug (came out a year or two ago) which means it comes with at least 2 disadvantages:  1) it's still brand name only, so very expensive and 2) having only been out for <2 years, all potential side effects are unknown.  Allopurinol has been around a lot longer and generally has minimal side effects.  I wouldn't avoid Allopurinol because of concerns over a rare side effect, but if you have other reasons, Uloric might be an option for you.

    i think there are a couple other options that others on the site might suggest.  Some people can also manage their uric acid levels with diet, etc.  Just be sure you know what your UA levels are.

    As for the doctor, be sure you are seeing a rheumatologist.

    in reply to: Forum Ranks #7929
    davidk
    Participant

    Hi GP.  I like the rankings.  I was noticing I am getting fairly close to the next ranking and it meets me with mixed emotions. It reminds me of Christmas 2008.  My mechanic sent me a Christmas card and gift certificate because I was his best customer in 2008… hmmmm… I liked the card and gift certificate, but not sure it was worth the thousands of dollars I had to spend on my breaking down car to earn it.   So, while I will feel a bit of pride when I have enough posts to go up a ranking, I'd rather have my *&$(*#*  toes stop hurting.  Laugh

    in reply to: new to gout, #7928
    davidk
    Participant

    Hi dj.  There are many others more qualified to reply than me; I was clueless 3 months ago, but I'll share with you what GP and others on this site have taught me.  I also have a transplant kidney, have had gout for 2 years, and am on Neoral.

    – yes, Neoral reduces ability to excrete UA. So does reduced kidney function.

    – you must reduce your UA. The only way to do it is with medicine.  You need to get on Allopurinol right away.  UA needs to get below 6.0 (the level above which UA crystallizes).  Your doctor will likely start you on 150 mg to ensure you are allergic, but they need to bump you up to 300 mg as soon as they know you can tolerate it.  Most people can. (I am a rare one that couldn't and am on Uloric instead- a more expensive- not necessarily better drug, but an option you should know about in case you have problems with Allopurinol– the only other option for those of us with kidney transplants, by the way).

    – you need to see a rheumatologist. they are the gout experts. Your nephrologist is your kidney expert, but not gout.  If he was, he would have been treating your UA levels perhaps as long as 2 years ago.

    – I've also been given high does prednisone for gout flare ups and it helped temporarily.  Ask about colchicine- a highly effective gout medicine, safe at lower doses, for kidney recipients. 

    -prednisone, colchicine, and nsaids (ibuprofen, etc) (which kidney transplant patients cannot take), are all good for short term pain relief, but a common problem with gout is doctors treat the symptom, but not the cause– high UA levels.

    – you should also drink a lot of water all day, every day, to help excrete uric acid.  you could also read about gout diets on this web site and reduce things like alcohol, red meat, shell fish.  But don't be lured into thinking you can manage this with diet or herbal remedies, with levels of 11 and your kidney situation, you must get on Allopurinol.  Diet alone can only reduce UA levels by up to about 1.0.  You need to get from 11.0 down to at least below 6.

    Hope that helps. Keep us posted. 

    in reply to: Should I buy a home Uric Acid tester? #7927
    davidk
    Participant

    Great advice everyone, as usual.  thank you so much.

    in reply to: Quiz – what caused my latest attack? #7918
    davidk
    Participant

    Hey Nate.  Last week, I almost posted the same questions.  My UA has been below 5 (4.5 and 4.9) for 2 months now, but I've had 2 major attacks the last 5-6 weeks and I could not for the life of me figure out why.  The only thing I could figure is the generic answer of — still cleaning out old deposits.  My last rheumatologist said that could happen for up to 6 months. (I had gout for at least 2 years with UA running 9-10 for at least a year before getting on UA lowering meds– thanks to GP, no thanks to doctors who never did realize what treatment was needed).

    yesterday, I went to a new rheumatologist.  To my surprise, he told me to double my uloric dose (I take uloric because I can't take allopurinol) and my new target ua is 3.0.  His reasoning is that with UA below 5, I should not still be having flare ups.  Also, in my unique case, I am on a medicine that causes problems excreting uric acid (cyclosporine for kidney transplant).  He said for most people the target of 5 is right, but for my situation he wants to get it down to 3.0.

    So, not knowing how long you have been on Allopurinol and how much old crystal you have to get rid of, perhaps you needed to stay on the 600 mg for a while longer?

    in reply to: Febuxostat #7524
    davidk
    Participant

    Mine in U.S. is $120 for 90 day supply 40 or 80.  $480 / year is pricey, but my UA levels went from 9.1 to 4.4 in 2 weeks, so if I can walk again soon, well worth it.

    in reply to: My worst Gout attack is happening to me now! #7387
    davidk
    Participant

    I'm interested in your experience with Goutcure

    Hi Trev-  not sure I have much good info, but I'll share my opinion.  I took the goutcure pills for and followed their 5 day cleansing diet exactly.  I only took one pill per day per their recommendation because of my kidney transplant.  By day 4 or 5, my gout flared up worse than ever. I emailed the goutcure folks and they told me to stop taking the pills.  then they had their nutritionist email me with various changes to the diet.  By now I had found gout-pal and learned about how critical UA levels were and then discovered mine was at 9.1.  I exchanged emails with the goutcure folks (always a nutritionist) and they confirmed their belief as on their web site that UA levels don't really matter much because it does not measure crystals in the joint.  I pressed them to answer if their remedy lowers UA levels and if they had and evidence/ studies of this. They finally answered that long term, it does lower UA levels, but that I was too focused on that.  By now I told them I was going on Uloric and they shared that they felt I was going down the wrong road taking a prescription drug that has potential side effects, etc. 

    I offered up in my email to them that if their herbal pill was causing the flare up, so does Allopurinol initially and I was ok with that if in fact that was their experience and it was just the first step to breaking down crystals, but in that case, a) I needed them to confirm that was what was happening, guesstimate how long it might last, confirm it really was going to lower UA levels, and recommend something for the interim pain.   They could not do any of those things.  they thought the reason I was having problems was because I was on an antibiotic at the time and took an occasional tylenol because their diet gave me such headaches I could not function.

    So, here's my take on goutcure…  but I may well be incorrect.

    * they may very well have a medicine that breaks down crystals and perhaps even lowers UA levels– I still have quite a few pills and I'm not convince that I might try them again after I get everything dissolved and see if my UA stays low… but if it doesn't I'm right back on Uloric.. and I won't be even thinking about this for months.

    * But even if their remedy works, they don't seem to understand very well what it is doing and don't seem to have any empirical data to share.. which makes it harder for me to believe in what they are doing

    * They are way overboard on diet.  It is so incredibly strict that it made me weak and sick.  Granted it is only for 5 days and I did it, but they think everything can be cured by diet.  They are opposed to any prescription or OTC pills for almost anything.  Their advice to me during the flare up was to avoid baths only take short luke warm showers because the chlorine in water can seep into your body..  there may or may not be truth to that.. I have no clue, but when that was the best advice they could give me for gout… they lost credibility with me.

    * They have no advice at all for short term inflammation and pain (except that “lemon juice is a good topical anesthetic.. and alternate ice and heat…).  If their pill really does lower UA, but causes short term flare up.. like Allopurinol or Uloric can.. then they need to also address the interim pain.

    * If you  read the reviews on Yahoo, they seem to have a lot of folks that it has worked for and I think it probably does do something– especially for those on the borderline. But it was never going to be enough for someone like me with levels in the 9, 10 range and with reduced kidney function therefore lower ability to excrete UA.

    So, bottom line, I think their product probably does break down crystals and does some good, but they don't seem to really be able to articulate exactly what their product does, so its hard for me to know how to use it.  They seem a little too focused on diet and don't seem to understand several important aspects of gout… like UA levels or short term pain and inflammation.  For those on the borderline it may be worth a try.Confused

    in reply to: My worst Gout attack is happening to me now! #7370
    davidk
    Participant

    Update:  1.5 years of gout, 9 weeks of walking with a cane, 3 weeks after finding gout-pal.com.  Gout-pal.com wins.   Per your recommendations I researched Uloric and got started on it 16 days ago–40 mg.  Got back my UA levels from 2 days ago and they are already down to 4.4. Smile(from 9.1 on Dec 1 and 10.0 1.5 years ago).  Before I got the results today I noticed my toes both felt a little better today than they have in weeks. I even walked out to the mailbox with no cane, albeit slowly, with minimal pain.  I hope and suspect I'll see some decent improvement over the coming weeks.  Finally getting in with a rheumatologist next Thursday, so we'll see if he has anything new to say.

    THANK YOU GOUT PAL!  THANKS TO GP ESPECIALLY AND TO ALL OF YOU WHO KINDLY POST AND SHARE YOUR EXPERTISE AND EXPERIENCES!  SOME OF YOU GAVE ME SOLUTIONS; SOME OF YOU GAVE ME HOPE; I DESPERATELY NEEDED BOTH!SmileSmileSmile

    I had gone to my doctors multiple times and told them I had gout and needed help. I tried ACV, Cherries, Baking soda, I haven't eaten red meat, alcohol, or seafood in a year.  I've tried several herbal gout pills.  I spent over 50 hours over the holidays researching gout on line and then found gout-pal.com.  I've sense posted on a couple other sites– I share with them what I've learned about gout and give them this advice:  go to gout-pal.com.

    I know this is a site of all middle age guys, but I gotta tell you anyway, I have tears of gratitude in my eyes.  CryThank you guys!  I am 45 yrs old with a wonderful wife and 4 kids. I can't walk without a cane, can't take my kids skiing, can't get the mail, shovel the snow, mow the lawn, ride my road bike.  Took my family to disney land in July and by the second day had to have them push me around in a wheel chair.  For 2 months, I have left my house about three times other than for work and church.  My lifestyle was shot until you guys steered me in the right direction.  I fully suspect I'll have full function back over the coming weeks thanks to you.

    Dave

    in reply to: My worst Gout attack is happening to me now! #7195
    davidk
    Participant

    Wanted to give an update but first, let me again express my sincere thanks to you GP and zip2play.  You take a lot of your time to keep this site going and to reply so thoroughly, logically, and thoughtfully to so many posts.

    I finally got into my Nephrologist today.  I started on Uloric 40 mg and he is getting me into a rheumatologist.  (I tried, but they were all booked out 2 months for new patients, but he'll get me in).  My Nephrologist was not familiar with Uloric… probably part of my problem.  Also did not seem too aware of the problem with having high UA even though I've been complaining of gout to him on and off for a year and he has 3 labs with high UA levels. Oh well, thank goodness for the knowledgeable folks at gout-pal.  (by the way GP, if you don't mind sharing I'm curious your educational/ work background- you are obviously highly intelligent and logical).

    My levels have been:

    5/3/2008   10.0

    4/28/2009 7.7

    12/1/2009 9.1

    I am 45 years old, 5'10 and weigh 145 lbs and have followed a pretty rigid gout diet for a year, so there's nothing more I can do with diet or weight (I've always been skinny and active– until now- still skinny, but I can't get any exercise since I can't walk).

    I appreciate the advice on the herbals. I've come the same thinking; I think I was able to manage my gout more or less for a while with things like cherries, diet, apple cider vinegar–and I do think some of the herbals can help some with breaking down crystals, but I'm way beyond that now. 

    I know my gout will get worse before it gets better now that I'm on the Uloric, not looking forward to the next few weeks, but optimistic that there is a future for me that does not involve a walking cane.  (I'm also taking colchicine and prednisone to get through the flare ups that will be coming).

    Thanks again and I hope to be able to report good news over the coming weeks.

    Dave

    in reply to: My worst Gout attack is happening to me now! #7077
    davidk
    Participant

    You two are awesome. Thanks for the advice.  I called my nephrologist Monday to get my UA levels, but he and his partners are out all week, but I just called back and talked to the nurse and it was at 9.1 on Dec 1 prior to the latest flare up.  Holy crap!  I had no idea.  I can't believe my Nephrologist never discussed my high UA levels or the need to bring them down.  Unbelievable.  No wonder my gout is so out of control. 

    I just read everything on the Uloric.com web site. Lots of good info.  It contraindicates with Azathioprine which is one of the immunosuppressants I am on for my kidney transplant.  Fortunately, when I tried Allopurinol, I had the same problem and I was able to swap out Allopurinol for Myfortic- another immunosuppressant.  When I had the allergic reaction to Allopurinol (dizziness, foggy head- could not function), he took me off both meds and put me back on the azithioprine. The correct solution would have been to try Uloric which I'll see if he'll try with me next week.  (We weren't sure which new medicine I was reacting to, the Allopurinol or the Myfortic, but the more I read, the more it sounds like it was the Allopurinol). 

    When you find an immunosuppressant regimen that has worked for 15 years, you really hesitate to change it.  I'll try changing from Azithioprine to Myfortic so I can try the Urlic, but know that it is with a bit of hesitancy. (regimen is cyclosporine- which I've read causes gout-, azathioprine, and low does prednisone).

    I'll also follow your advice on looking for a good rheumatologist. My nephrologist is a good guy, but young and seemingly a bit inexperienced in certain areas.

    I hear you on the ineffectiveness of herbals and generally agree, but I'd like your advice on this:  This goutcure herbal remedy contains: Artichoke, Saponins from Yucca root, Aged-odorless Garlic (allium sativum), Tumeric, and Certified 80% Silymarin from Milk Thistle.  They claim it breaks down the crystals and does in fact reduce UA levels. The fact that I had a more severe acute attack after taking it for a few days is similar to Allopurinol or Uloric, so I'm curious if it is doing a similar thing as those drugs but with herbs.  I'm not enamored with this goutcure herbal remedy, but given the problems I had with Allopurinol and the need to change my immunosuppressant regimen to try Uloric, I'd be interested if this herbal remedy might lower my UA.  I stopped taking it a few days ago when the attack became more severe.

    Other update: I started on high dose prednisone a few days ago and the swelling and pain is significantly reduced. I can hobble around the house with minimal pain.  Both toes are still inflammed and I can't bend them upward, so the last part of walking is not possible– this is the state I've been in for a month, but it's now both toes where it was usually just one.  I also started on colchicine two days ago. Just two .6 pills per day- maximum allowed for kidney transplant patients.  The diarrhea started this morning. I took a half pill this morning and will try to keep taking .5 to 1 pill per day if I can.

    Thanks again for the great advice. It's clear to me I have to get my UA levels down.  Now I just need to find a medicine I can take.

    in reply to: My worst Gout attack is happening to me now! #3135
    davidk
    Participant

    Hi all.  I don't know what else to try. Looking for advice.  I've been reading posts here for a couple hours and there seem to be some bright, helpful people.  Here's my situation:

    – Kidney transplant 15 years ago.

    – used to get gout for a year before the transplant, could cure easily with colchizine. Went away until a year ago. Been more frequent and painful ever since.  Current episode has been for a month straight.  Have to walk with a cane. Today is the worst ever; I can barely get out of bed to go to the bathroom.  Both big toes, one trophi on one.

    – can't take allopurinol – tried it and had the textbook allergic reaction to it.

    – can't take colchizine anymore- one pill gives me violent diarrhea and makes me so sick I can't get out of bed- other than to the toilet. Plus, I have to take other immunosuppressant medication; so I have to be able to keep something in my system.

    – tried ACV and cherries with some success for a time, but no longer working.

    – stopped eating red meat and sea food a year ago. Don't drink alcohol, caffeinated drinks, carbonated drinks.  Eat a fairly health diet.

    – started on goutcure.com's herbal remedy 4 days ago which is really three things: 1) pill that supposedly breaks down uric acid and moves it into the blood stream. 2) drink 75 oz of water to clear the UA. 3) extremely strict diet (fruits, vegetables, brown rice, etc) for 5-7 days to not add more UA during the cleansing time.  Normally the pill is 3 per day, but for reduced kidney function they suggest 1 pill because your body cannot cleanse the UA being broken down and put into the blood stream- they don't want you to have more dissolved UA in your blood than the body can clear in 24 hours.

    – the goutcure.com stuff makes some sense to me and they have a lot of people that swear by it, but so far, it has made me significantly worse. I suspect that is because I have more dissolved UA in my blood than I can clear- even though I only take 1 pill a day, drink plenty of water, and follow the strict low purine cleansing diet.  I contacted them and they said to stop taking the pill for now and a nutritionist will contact me tomorrow.  I'm also on an antibiotic for a sinus infection right now which they say causes havoc on gout; it may be the first one in a year, so that could be the cause; I don't know. 

    -the goutcure folks say that you have to have a high enough alkaline level to clear the UA in the blood. Is there a way to measure your PH level?  I don't know if that is the problem or not. Just in case, I'm trying the baking soda drink today.

    – After more internet research, today I am trying the baking soda drink. I've done that once before, but I think I only drank one glass; no results.  We'll see.

    – I'm also going to try the black bean broth listed on this site today. I'm also loading up on cherries again.

    – This site mentions measuring your UA level quite a bit. I'll ask my nephrologist tomorrow if he measured that at my last blood test a couple weeks ago.  Not sure what to do about it if its high, but I'll ask.

    That's what's going on.  Thanks in advance for any suggestions. I need to get better so I can work and spend time with my family again. I'm too young to be a disabled cripple which is about where I'm at.

     

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