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Dare I ask if anyone has tried this Krystexxa? I’ve been away from this forum for a long time, but the gout? She never stays away for too long, so I’m back again.
Done tried AP, colcrys, uloric, probenecid, indocin, etc. Might as well try a new one too if it doesn’t kill me.
And no, triathloning, mountain bike racing, a great diet, and no alcohol wasn’t enough to keep the beast at bay.
vegetarianGuy said:
You taking all of them together daily? Is that really wise or healthy?
You sound like a human version of a lab test tube 
I should have been clearer. Through the last six months I have been on at least one of those drugs. They never crossed over. The 300mg of AP and .6mg colchicine 2/day seems to be the sweet spot. Probenecid didn’t do much for me and I think the Uloric might have started the cleansing. Ap is my goto drug right now since it has continued the cleansing and is MUCH cheaper than Uloric.
SUA level was a 4.2 last week and a 3.0 last month. All is right with the world.
I have to say though. Popping multiple blood vessels in my eyes while on Indocin was quite scary. I guess I shouldn’t have been attacking hills with my road bike while I was on that though. You can’t fix stoopit!
Here’s a good news update for you. After almost five months of constant pain, I appear to have turned the corner. No alcohol for 11 months, and a combination of uloric, probenecid, AP, colchicine, indomethacin, and ibuprofin for 6 months made the difference.
I really saw improvements when I went on 300mg AP and .6mg 2/day colchicine. Keep the faith that there is an end to difficult times and STAY ON THE MEDS! That second item was my biggest problem for 13 years.
I just finished a race peak that included 4 mountain bike races and two triathlons. There was never more than a twinge in any of my joints and the tophi blob on the end of my big toe is not 1/4 the size it was 6 months ago. None of this would have been possible if I had accepted my gout future as written in stone or if I had not religiously taken my drugs.
Keep on keeping on and know that this pain is temporary. Do the right things to make yourself better.
zip2play said:
Jeff,
I don’t know, Jeff.
But it seems that he is down to what looks like 5% bodyfat now. I saw him clothed and my first thought was anorexia, bulemia, or cancer but then I saw him nude and I realized that he is down to steel fibered muscles and sinews.
He had gained an exorbitant amount of weight last year?maybe 30 pounds and might just be overcompensating ala Scarlett O’Hara: ?I’ll never be poor again? = ?I’ll never be overweight again.?
From peak weight last Fall to today, I’ll bet he is down 40 pounds?I’ve never seen anything like it short of THE BIGGEST LOSER, but this guy, at his WORST had a terrific body.
But then I guess it’s easier to grind a bike up a steep hill at 40 pounds less.
(Who knows, maybe one day I’ll go to the gym and see him hobbling around with gout.
I’ll trade him allopurinol for steroids!)
That makes sense. He could have been on a bulking phase too if it’s a body builder. I was confused and thought the 20# difference was a regular thing.
Zip- why is your friend at the gym gaining and dropping 20lbs? That’s crazy! I’ll usually drop 5 pounds in order to get down to my race weight, but 20 is nuts!
zip2play said:
If you want a SLOWLY absorbed sugar, choose lactose, not glucose, sucrose, or maltodextrin. In fact even fructose is probably absorbed much more slowly than maltodextrin. Better yet, use a complex starch. (There was logic behind spaghetti loading the night before a marathon.)
Totally agree and I apologize if I have been steering things towards edurance sports. 😎
I usually eat good complex carbs, lean protein,and top off the body with as much water as I can hold during the days before a major event. Breakfast the day of consists of at least one bannana and a whole wheat tortilla stuffed with peanut butter. I will then eat hammer gel and perpetuem for the first 2/3rds of the bike. It allows me to fuel for the run without becoming bloated and full. The electrolytes and glycogen levels in my body should be good to carry me through the run. If not, then I’ll adjust with a little gel. I hardly ever drink during the run leg of a sprint tri. Olympic? Maybe if it’s hot. I should be able to run 6.2 without aid unless it’s brutally hot. Besides, drinking takes time!
If I need a little somethig to wet my mouth, then I’ll throw water into my face. Never engery drinks. That’s just gross and messy. I dumped an entire cup of orange gatorade down the front of me at mile 3 of a half marathon. Luckily, it was raining that day and most of the junk washed off. The volunteers put the wrong drink in the wrong cup.
Ktimmermann said:
Hi, I’m a very keen triathlete. I drink minimal amounts of alchohol and am quite lean (10% body fat). My diet is good and I train between twenty to thirty hours a week. I have suffered from Gout in the past. My Father used to get it and I drank heavily at university.
I had a year without an attack until about a month ago when I had a huge attack that lasted ten days and was excruciating!!! I eventually went to see the doctor and I was prescribed colchicine and the gout went. Since then I have had 3 small attacks lasting about two days.
Nothing has changed in how I train or eat?the only thing I can see in my food diary is I have swapped energy drink from High 5 to Power Bar powder drink. I saw on the site (awesome by the way!) a article showing powdered drinks and cordials showing these to be gout triggers. Can anyone add to this? Has anyone else had this, especially cyclists, runners, walkers etc?? I’ll cut out the coirdials no worries, but energy drinks are quite vital to my training / racing.
Are there any studies about this or experiences by people on here?
Thanks?.
Good job! Keep up the triathlons! This thing can’t beat you. I have no idea what chemical compounds cause xyz. There are much smarter people on this board that can, and have, analyzed the chemisty.
However, I want to offer a suggestion if you are will allow. My liquid consumption comes in the form of just a few things- water, coffee, cherry juice, and Hammer Nutrition products. In that order.
I use Hammer products because they don’t contain simple sugars. All of their goodies are maltodextren based and it provides a longer and flater energy curve than tradition sugar-based drinks and supplements. I have also noticed no coorelation between this and my gout attacks. Perpetuem has fueled me through 5 tris, numerous bike races, and too many 5k through half marathons to count. There is no spike and crash. Want something to give you a higher curve? Add some hammer gel to the mix and it will give you an extra kick. Again, it won’t leave you with a crash later either. It’s also isotpic, so you stomach does not need to steal extra liquid from your body to dilute and then digest it. It goes straight in to the blood stream. Just do not mix it with a sugar based solution. Your stomach can not digest both at the same time. You will end up getting sick.
True, this year my marathon training was derailed by a gout cycle that still continues. The furthest I went in trainiing was 17.5 miles. However, I don’t see that the distance or the drink really played a factor in my attacks. My inability to keep on the meds was probably my major flaw. For what it’s worth, my off season training consisted of running 25-30 miles, 30 miles on the bike, and around 1k swim per week. Now I’m down to almost nothing. :yell:
Find what works for you and stick with it. The Hammer suggestion may or may not work for you, but it should be able to consistently fuel your adventures. I’m starting to turn the corner on this endless gout cycle and I think I might actually be able to compete at a serious level by the end of the summer.
Full disclosure- I am in no way affiliated with Hammer Nutrition. I am only a customer that has seen good results from their products.
nokka said:
Recently we have seen quite a lot of people asking questions on the forum who exercise quite a lot.
The traditional image of the gouty is of an indolent middle aged guy overeating and hitting the port bottle. Yet, just recently its been fit people asking the questions. My own third and final (before allopurinol) came about after I upped my exercise regime to get super-fit before travelling overseas. I always try to stay fit, but I increased the time I spent doing cardio and the frequency I went to the gym. Plus started to do spinning, which is tough work. I have always rather given it all when exercising; can’t see the point otherwise, but was starting to leave the gym feeling pretty knackered. (For those not in UK that means extremely tired
). After a few weeks of that, bang, had the attack.I’ve sometimes wondered whether it was that change in exercise regime to a more intense form which caused the attack. I’m not overweight, have a good diet, no family history. I have also read that food only causes 10% of the purines we create each day; the other 90% is our bodies breaking down its own tissue to make purine. Seems to make some sense that if we then exercise in an intense manner we could easily create sufficient uric acid to topple us over the edge.
I have no intention of giving up on exercising. I feel the advantages far outweigh the disadvantages. But it does make you wonder. Maybe, in time, we’ll see the popular image of the gouty change. On hearing we have gout, perhaps, rather than saying ‘Been hitting the port a bit much, old chap ha ha ha’ they’ll say ‘Been hitting the treadmill a bit much; best take it easy, I’d get on the sofa with a beer if I were you ‘
Any thoughts ?
The popular myth about gout suffers plagues me on a daily basis. The look of shock and horror when I say that I have gout has been hard to swallow. The person usually follows with some snide comment about how I shouldn’t drink as much. I’m as sober as a judge.
True, exercise can exacerbate the situation, but that should be just as manageable as a more sedentary life style.
I’ll continue to race in all manners that give me pleasure, and I will also get the word out that this is not necessarily what people think it is. I am not ashamed.
This is in no ways intended to be a brag. It’s a vent about people?s assumptions and stereotypes. I am a triathlete, I race bikes, and I run a lot. Only a massive attack will stop that.
It could be worse. We could have cancer. At least gout won’t kill us.
These attacks come at random times. They have not been tracking the characteristic attacks. That’s what makes this so weird. I had what can be considered 1/2 attack yesterday and to day everything feels ok again. Same joint. Always.
Zip- my last SUA test was 9 days ago and it was 3.0
I’ve gone to wearing wool socks in summer and I can not up my cochicine. A person has limits. :frown:
How about these micro gout attacks?
I recently switched from Uloric to Allopurinol. Regardless I have been on one of those, with colchicine, for almost four months now. The attacks have been coming nonstop and always in the little joint of my right big toe.
Here’s the strange part. They sometimes last for less than a day. What’s up with that? This is something I have not experienced in my 13 years of gout attacks.
Yesterday, I woke up at 2am with some raging pain. I took my normal morning mix of colchicine and AP. This time I added a single Indocin to the mix for pain. By 10:30am the pain was GONE. The movement in my joint was back. Here’s the catch. My foot is still reddish/purple and very inflamed. I feel like I could run less than 24 hours after the attack. Of course I won’t because that would be stupid. I’m saving it all for a mountain bike race on Sunday. 😎 These micro attacks come from nowhere and leave just as quickly.
Is this a good sign that my body is getting through the UA crystal removal process? Is there light at the end of the tunnel? This has been the worst four months of my life. There has been the odd 1 week long attack, but recently a lot of them have been in and out strikes.
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.
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.
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:
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.
Tophi Removal?
What are the circumstances that would require tophi removal, and is it advantageous to get the little buggers removed? If these things are little mines of urate crystals, then why not have them surgically removed from the situation?
I have developed what can only be described as a ball of tophi at the end of my right big toe. It looks like a half marble sized ball that is hard and painful to the touch. This is also remarkably close to the joint that has given me 99% of my attacks over the last few months. Remove the gout mine, and remove part of the problem?
It seems logical in my mind. Understand that I am an athlete, so going under the knife is not my first preference.
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.
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.
