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I’m a new member. I posted about a month ago, but did not have all of my stats. So here goes-
36 yo, 5’8″, 175#. My UA number was 4.0 three weeks ago and 6.2 a few weeks before that. No family history of gout.
I have had at least two big attacks per year since I was 23. The initial attack occurred and then I took 3x the maximum dosage of a diuretic because I was given the wrong prescription. I was told then that I would have gout and heart arythmia for life. The heart problems are no longer lingering, but gout still plagues me. There have been attacks in my big toes, middle joints in my feet, ankles, knees, and both elbows.
Fast forward. I made a lifestyle change and got in shape- running, riding bicycles, swimming, and I dropped my weight from 218 to 190. Life was good. I went 18 months without an attack and I went off my meds. Fast forward again. I was 185#, coming off of a half marathon, 3 triathlons, and a few mountain bike races over the course of a summer. Upon two weeks of rest, I get the worst attack I have had in years. It stayed for two weeks and actually moved while I was on probenecid and indomethacin. There was never an attack
Fast forward again. I am pain free and training for a marathon. There is zero alcohol consumption, very little meat( I eat mostly veggies, fruit, and whole grains), and lots of water. Around mile 17 my feet cease to work. It’s not painful. I just can’t bend my big toes. From there the imobility kicks in sooner and sooner. I take a week off and I get another strong attack in my right big toe. This was late February. Doc puts me back on indomethacin and I had been taking probenecid since August. After a week the pain goes away and I get back to workig out. While doing hill sprints, I pop three blood vessels in my eyes. Doc immediately pulls me off indocin and gives me a steroid pack. He also switches me to Uloric and Colchicine. 80mg of Uloric/day and 2x the colchicine pills per day.
Things go away. I walk normally again. The attack comes back. Repeat. I have now ceased all of my running and only swim and bike. There have been at least 5 attacks that I can remember since late March.
At this point my right big toe is much larger than my left big toe. All attacks have occured in the last joint of my big toe. Every single time since March.
My schedule included the prescribed pills and 1/2 to 1 cup of cherry juice per day. My back near my kidneys hurts most of the time, my foot is no better, and I don’t want to talk to you about my digestive system. Life is horrible. There is no end in sight.
Enter the specialist. He keeps me on the major meds, takes blood samples, tests me for some odd genetic marker, and xrays the feet. His ruling is that my uric acid levels were high based on the normal doc’s notes, but there is no evidence of gout in my feet based on the xray. Stay on the high powered drugs for 6 more weeks and don’t run at all. If I have another attack, then he will seek a second opinion.
Am I missing something? I’m in great shape, off of the forbidden foot list, and I’m on all of the high power drugs. After so long though, I’m wanting my life back. Scratch that. The ability to walk without a limp would be desirable at this point.
I tried Alupurinol years ago but had some kind of side effect from it. Unfortunately, I don’t remember. The Probenecid and indomethacin approach worked for a long time.
So I submit this to you, the experts on the web, is there anything I am missing? I tried the baking soda trick for about a week, but I suffered a mini attack during that time and quit. Surely you can all understand the fear that I have in trying something new. If it brings the beast, then I’m screwed. Days worth of pain is hard to risk in my opinion.
Tri season is coming fast and I have already commited and paid for three tris, several bike races, and a few running races. I would rather not lose all of that.
Last night I was so frustrated and angry that I almost drank a beer out of spite. Life was better when I could drink beer and eat cheeseburgers.
Hi Jeff- There's a lot to take in here. What you have been through with the diuretic echoes many experiences.
I would think your kideys have taken quite a knock. This has progressed to gout as it says on the label often enough.
With your SUA figures it looks like you're still in process of reducing it and suffering the usual trials.
Your fitness schedule is not helping your efforts here- with all that lactic acid competing for attention as well as urate reduction so I would trim back your program to the cycling & swimming only. The shock to joints of distance running to say nothing of wear and tear is huge and you really have to take stock of what you're asking your frame to do here. Walking is slower, but easier on joints tbh!
What about distance walking?
I reckon you could lose a few more lbs too, and have a better BMI- but 1lb a week is an ample loss target .You seem pretty fit, anyway!
On the twinge front- try Black Bean broth- it does work for me and others, but I don't take it every day myself- just when needed.
Herbal remedies are not lauded on here- but I'm currently trying a mix of them [without the pesky Magnesium Stearate component] , organic Tumeric, Milk Thistle and Artichoke. Garlic always on the menu.
Mainly, we all need time and loads of patience to deal with this curse of gout, but being kinder to your body is a big part here. Forget the money, your health is FAR more worth to you.
Look after the machine and it will look after you- at least the worst is hopefully behind you now!
It can take many months to break through the SUA build up [6 often mentioned here, as being likely] – Keep going..
Hi Jeff,
I can speak to the heavy training part of your misery. I am 39, 5'9″ and 195#. I have had active Gout attacks for about 9 years. I have lost 55 pounds in the last few years mainly through running and hiking/backpacking. I was always a runner, hiker and then I gained quite abit of weight in my late 20's while I was focusing on work and making my millions, I got the weight but not the millions 🙁 I treid to go med free for a long time and it never worked for me. I found I was having serious problems when I ran more then when I walked so I eliminated running and increased the walking. I would normally walk 1.5 hours a day cross hilly terrian all off road(~7 miles). This helped for a while but I found I was having serious attacks days after completing any type of long distance trip or steep intense trip. The last straw for me was an attack I had 3 days after completing a rather tough 14 mile ridge hike with a very steep ending, we completed this in about 6 hours and 3 rest days later an attack started that did not let up for a month. At the time I just took indomethicin but found that was messing with my stomach way too much. At this point I decided to get on the meds so my doc started me on Allopurinol 300mg. I was also given prednisone for when I got attacks and I knew I would. Since then I have had 3 attacks and have followed up with my doc for another blood test. He found my levels to be hovering around 6 and after some discussion he wanted me to increase my dosage of AP to 600mg day on days I did intense exercise. So I started the 600mg dose straight away due to the fact that I am either currently hiking or biking just about everyday, rest days get worked in a couple times a week max. Just a few days after upping my dose I got hit with another attack, somewhat unexpected because I had been a few months without and it had been a very long time since I was able to go 2-3 months without one. So at this point I am sticking it out through this next set of attacks and continuing on with my workouts when the attack subsides. I have added in biking because I have found that all hiking is boring after awhile but also I am finding the pain in my feet and else where to be much greater when I just hike day in and day out. Biking has offered a huge relief to the joints and now I do a pretty even mix. I will know more when I follow up again in 3 months to get another lab test done. I have resigned myself to the fact that running is over for me, we had some great years but it just compounds issues. Just as eating foods high in purines elevates your levels all that exercise does the same, stick with the meds, test your levels every 3-4 months and don't be shy about increasing your meds to account for your lifestyle, after all that is what makes the meds great it will allow us to still do things we otherwise would never be able to do again.
To summize 600mg Allopurinol daily, prednisone for when attacks occur and water intake, easily two gallons a day. This has been working for me. I found that during the years of expermintation with diet and attack suppression meds that combinations of things could make life miserable on all fronts. Find the combo that works for you. From what I have learned and understand you need the daily meds(Allopurinol, Uloric) to get your Uric Acid levels below 6 and while this is happening something to address the attacks that you will get, for me prednisone has worked great and as a bonus it really fires you up 😉 Indomethician really messed with me bad, I will not touch that stuff again. It gave me digestive issues from hell. On the diet front I have changed things but by no means am I a great eater. I love junk food now and again so I have been sure that I do not try to stick to a diet I know I will not be able to stick to long term so while the daily meds are addressing the overall Uric Acid levels it does so with a diet that I can easily stick with long term.
Just a couple additional thoughts Jeff.
The Uloric will eventually do it's work but you will need patience and a complete lifetime committal to it. If you are uncertain of the side effects of allopurinol perhaps you might give it another trial if the cost of the Uloric becomes onerous.
Yes, diuretics, especially thiazides, or worse clorthalidone, can readily cause…it caused mine and it is so sad because absent these drugs, GOUT need not have happened. But alas, once you have had an attack you can not become UNgouted by stopping the diuretics. You will always have some crystallization sites for more attacks. Doubly bad because back in the1960's and 1970's almost EVERYBODY who walked into a doctors office was found with hypertension and given “water pills.” Why did they prescribe diuretics for you?
Since uric acid is caused by crystallization of uric acid triggering the immune system inflammation and uric acid is liberated when lean tissue is destroyed or catabolized, the flooding of the body with uric acid is probably IMMENSE about 17 miles into a marathon. THe concomitant dehydration further concentrates this overload and it comes out into your foot joints.
X-rays to reveal gout are very unreliable. They can be trusted only when you can already see rather large tophi and even these only appear as fuzziness. X-rays DO show extreme joint damage in CHRONIC gout but this is later in the game.
Indocin (indomethacin) is a good analgesic. But it causes far too many side effects, the worst being bleeds (gastrointestinal, and apparently EYES) that it should not be used on a day to day basis.
Have an ultrasound done on your kidneys and ureters. A side effect of the potent uricosuric, probenecid, is kidney stones. If positive, you will need an alkalizing agent to melt them away.
Tri season is coming fast and I have already committed and paid for three tris, several bike races, and a few running races. I would rather not lose all of that.
Last night I was so frustrated and angry that I almost drank a beer out of spite. Life was better when I could drink beer and eat cheeseburgers.
I think you might consider the payment for these races a sunk cost and walk away from it. Hammering away at gouty joints is not a good idea because they can hammer back with all the fury of Hell unleashed.
With Uloric (or allopurinol) you will be able to enjoy a cheeseburger and a couple beers…but maybe not another marathon anytime soon.
So glad I found this forum!
I understand that I might have to cut back on the abuse. Truth is I was running 20 miles a week during the 18 months that I was gout free. I was up to around 35 miles a week when the major problems kicked in.
Could this be the process of de-gouting myself? With one exception, every single attack that has occurred in the last few months has been isolated to the last joint in my right big toe. My UA numbers have been lower than the 6.5 threshold, I’m free from virtually all trigger foods and drink, and yet I’m worse off than ever.
Part of me wants to drink a few beers and eat some chicken wings. I was emotionally more stable at that point than now- when I am at my overall healthiest. The problem is some of the people I would exercise with. A few of them were raging alcoholics. 😎
So the overall opinion is to cut back on the intensity, keep on the mega drugs, and wait this out?
BTW, I was prescribed indocin so very long ago. The pharmacist screwed up and gave me indapamide at 3X the max dosage. That was the first attack. I don’t take any other meds besides the ones for gout and I drink a LOT of water a day. Well over three liters.
Trev- I’m at 14% body fat. How low do you want me to go? 😆 I wanted to be at 10% when race season starts, but that isn’t going to happen by diet alone.
Actually, I think my memory is off. I believe I was off the probenecid unless I was feeling any tightness in my joints. I went full on at the first attack in Feb. Could I be bringing this on myself because I’ve been on probenecid/uloric full time since mid February?
Before I was only on probenecid when I felt an attack coming on. Never full time for any extended period.
Hands down this is the best resource I have found in the decade that I have been struggling with this affliction. Thank you all for your contributions.
I find myself checking this site whenever I have a free moment.
Jeff- No offense meant, I know you're fit 🙂 If you stop activity all that muscle will turn to you know what in no time.. so plenty of ' low level' activity and diet mods are needed while you sort this out!
I'm simliar weight and height to you and told to lose a stone- but nothing like your current fitness to hold me off on the body fat ratio.
Presumably you were on diuretics for BP needs, or was it- slimming? wicked grin <g>
Anyhow, I know what you mean about needing back-up from fellow sufferers- even when it's more widely understood one day, gout will still be a lone track when it kicks in hard. Nothing beats it for agony.
As a follow on- Beer= Baaad, you know that, and though you don't spund like a potential wine buff- it does have a health 'plus' at the glass or two level per day, and is not thought to worsen gout [by recent studies].
I did meet a fellow traveller last week who insisted the reverse was true, and he'd switched to beer instead of red wine. Everyone has both common traits -and personal vagaries, that break rules.
I find wine OK, and beer dead dodgy. So stop thinking about it- it's a giveaway as we all like what's bad for us.
You won't have to take up reading poetry, either 🙂
Jeff, with long-time gout sufferers, the cure can often seem to be worse than the disease. At least that is how it's been for me over the last seven months. During this time, I've drastically changed my lifestyle, and, well, it's really sucked. It almost did seem that I was better off a year ago when I was 'only' getting horific attacks every couple of months, but was still able to get out and do what I loved. I eventually did hit rock bottom, though, and was unable to do much of anything at all. This is not a point you want to reach! It was then that I got on 600mg of Allopurinol per day, went veggie and completely stopped drinking alcohol. I also wasn't able to ski once during argueably one of the better ski seasons in the Alps in the last twenty years. Sucks to be me!
So, here I am, seven months later, and I really can't say my life is much better. I'm still going through horrific attakcs, I'm unable to do much of anything physical, I always feel like crap, I'm tired, my stomach always hurts, and on and on and on. But, what other choice do I have?
If you read the advice on here, you'll come to understand this is just how it's got to be before you start to see improvment. I'm still waiting to see the light at the end of the tunnel, but I'm assured it will come eventually. Until then, I'll just keep on keepin' on, doing what I can to eventually get this gout under control. It's the way of the gout.
Hope I don't sound like too much of a downer – it's been a rough month. There have been many times I've wanted to say 'screw it' go grab a sixer of some good microbrew and chow down on a couple of rare steaks, but I haven't. I know exactly what would happen if I did that and I'm not willing to go down that road again!
Good luck to you!
trev said:
Presumably you were on diuretics for BP needs, or was it- slimming? wicked grin <g>
No sir. The pharmacist just gave me the wrong meds. I don’t know how Indapamide can be confused with Indocin, but it happened. Back then I was fat and lazy, so water pills would have done nothing for me.:cool:
Jeff,
If I read you right you did yourself an EXTREME disservice by going on and off probenecid. Once started the committtment to these drugs must be for LIFE. Going on and off is the absolutely best way to guarantee painful attacks. That pertains to probenecid, allopurinol, or Uloric.
Just keep on with both drugs until your attacks stop and then judge whether you can go off of ONE of them. You will NEVER be able to get off both (unless you replace Uloric with allopurinol.)
GOUT does NOT go away.
zip2play said:
Jeff,
If I read you right you did yourself an EXTREME disservice by going on and off probenecid. Once started the committtment to these drugs must be for LIFE. Going on and off is the absolutely best way to guarantee painful attacks. That pertains to probenecid, allopurinol, or Uloric.
Just keep on with both drugs until your attacks stop and then judge whether you can go off of ONE of them. You will NEVER be able to get off both (unless you replace Uloric with allopurinol.)
GOUT does NOT go away.
I have learned the error of my ways and I’m on it for good, or until I get through this healing process. Then I might try a swith to Alu instead of Uloric. Even with insurance that stuff is expensive!
I’m going in to see the doc today so I can set up blood tests every two weeks. I’ve been on 80mg uloric and cholchicine 2x day since March. I want to make sure the insides are still working properly while my joints heal. Three months of digestive stress has me concerned.
Again. This is the best source of information that I have found. You should all be commended.
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.
davidk said:
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.
I think my body has adjusted to the colchicine. After more than three months, it had to. Doc changed me to 300mg of AP instead of 80mg of Uloric to see if I can’t shake these micro attacks that last 2-3 days. So far so good (3 days in) and my UA level was 3.3
Of course that was before the state mountain bike race. 😎 I’ve abandoned all hopes of competing this summer and I’ll just enjoy the races I have planned. It’s kind of hard to compete in Olympic distance tris if you haven’t trained. The possibility of injury is just too high.
trev said:
Hi Jeff- There's a lot to take in here. What you have been through with the diuretic echoes many experiences.
I would think your kideys have taken quite a knock. This has progressed to gout as it says on the label often enough.
With your SUA figures it looks like you're still in process of reducing it and suffering the usual trials.
Your fitness schedule is not helping your efforts here- with all that lactic acid competing for attention as well as urate reduction so I would trim back your program to the cycling &? swimming only. The shock to joints of distance running to say nothing of wear and tear is huge and you really have to take stock of what you're asking your frame to do here. Walking is slower, but easier?on joints tbh!
What about distance walking?
I reckon you could lose?a few more?lbs too, and have a better BMI- but 1lb a week is an ample loss target .You seem pretty fit, anyway!
On the twinge front- try Black Bean broth- it does work for me and others, but I don't take it every day myself- just when needed.
Herbal remedies are not lauded on here- but I'm currently trying a mix of them [without the?pesky Magnesium Stearate component] , organic Tumeric, Milk Thistle and Artichoke. Garlic always on the menu.
Mainly, we all need time and loads of patience to deal with this curse of gout, but being kinder to your body is a big part here.?? Forget the money, your health is FAR more worth to you.
Look after the machine and it will look after you- at least the worst is hopefully behind you now!
It can take many months to break through the SUA build up [6 often mentioned here, as being?likely] -?Keep going..
1Good morning Athlete, I just wanted to tell my story.. It started Jan 1. I woke up with a terrible pain behind my lleft ankle. Within 2 hrs I was in bed and that's where I stayed for about a week, screaming in the worst pain I have ever?experienced. Now I have known pain but this was something out of a horror story. I never knew pain existed on this level. No exaggeration. By the time my husband got me to a hospital my foot was swollen beyond recognition. It looked liked a rubber glove that had been blown up! You could not tell where my toes were or if I even had toes. The doctor and the infectious disease dr. diagnosed me with cellulitis and kept me there for 3 weeks on triple iv antibiotics. My dr. didn't believe in pain med. and told me it would be better for me not to take anything so that when I left the hospital I could better deal with the pain! That was the first month. I was then sent home on more antibiotics and told to see my gp in two weeks. After the 2 weeks I went to see my?gp who said I didn't have cellulitis but that I had an acute attack of gout! Now I am 5'1, weigh 105 and am in great shape.I am a swimmer and a cyclist. I do have arthritis pretty bad but nothing that would make you think gout! By this time I had developed tophi all up my calf and was still in horrrible pain and unable to walk. So he told me to take indomethicin for 2 weeks and all would be fine. On my next app. I went in and he took one look at my leg and told me to get to the hospital asap! 4 more weeks in the hospital and a radical operation later for the tophi and I am back at home. Learning to walk again but it is very slow. Considering they were talking about me losing my leg and possibly never walking normally again I must say I'll take it.? The foot is looking much better, my diet is very strict and all seemed to be going well until about 4 days ago. I went to the store and bought a box of honey nut cheerios. The big box! After not having sugar for so long I went on a cheerios fest. I ate the box in 2 days and woke up with my foot swollen again. Stopped the sugar and it went right down! Well, it's been 3mos. and I don't think I will ever be the same. It's been terrible and now I realize that it's a life long fight. I really feel for you, if you have any advise, or anyone does please chat back with me!?? It would be greatly appreciated! Good luck to everyone out there with this bizzare disease.
kimwarren21 said:
?
By this time I had developed tophi all up my calf and was still in horrrible pain and unable to walk. So he told me to take indomethicin for 2 weeks and all would be fine. On my next app. I went in and he took one look at my leg and told me to get to the hospital asap! 4 more weeks in the hospital and a radical operation later for the tophi and I am back at home. Learning to walk again but it is very slow. Considering they were talking about me losing my leg and possibly never walking normally again I must say I'll take it.? ?
Good luck to everyone out there with this bizzare disease.
Kim (if that is your name), I doubt very much that you had “tophi all up my calf “. Tophi, generally, develop ONLY on/in joints on the bones, and you got mp-teens of those in your body. And there are no joints on your calves, until you get to your knees.
?I think you got a good case for strangling your doctor or sue the living daylight out of him/her for putting you in the hospital and through that radical operation. I don't believe for one minute that those a-holes removed tophi from your calf.
And gout is NOT a bizarre decease. There is nothing bizarre about it. It's one of the oldest deceases and well documented and one of the least successful treated one, except by the gouties who have taken their lives in their own hands rather than leaving it in the hands of pharma controlled and paid pill pushers of the medical industry. (You and your insurance company just paid for a down payment on a nice sailboat for one of those pill pushers.)
I hope, “God Gout” has something to add to this.
Kim,
Not to naysay your doctors but what is sounds like is that you had a horrific?staph infection from an insect bite that caused cellulitis.
I had the same thing?from horsefly?fly bites on my ankle with the need to cut my shoe off at the hospital.
?
The day before your attack, were you outside with bare ankles?
?
Did you have any blue or purple streaks up the calf?
(My infection was stopped with a massive dose of antibiotics.)
?
Gout is terrible but cellulitis is far worse.
Can the OP of this thread contact me regarding gout? My husband has found a method to keep gout attacks at bay and would like to talk to you about it. No marketing a product just a change on your diet based on your post.
This looks very suspicious Cynthia, but I’ve approved it just in case you do have some relevant information to share.
This type of post is wrong. If you want private conversations, go to Facebook, or something similar. My gout support services are run in public, so that everyone might have benefit of free gout information.
On this specific thread, it is rather pointless to try and resurrect old topics unless you have some new and relevant information.
I hope you do have some interesting information for athletes who have gout. Hundreds of athletes visit these forums, and it’s great if we can help them avoid gout attacks.
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