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Hi folks. I've been on Uloric for 3 months and have my UA running below 5.0. Toes were in almost perfect shape for a few weeks, then I had a major flare up. The only thing I can think of is I ate about 10 bites of a crab based appetizer dip and a half serving of orange roughy. It was about 36 hours later when I started havign the flare up.shell fish seem to be a trigger, so I've avoided them for a year, but thought a few bites of an appetizer would be ok. I also am very confused about which fish are ok and which ones are not. I've read about seafood on this site and which ones are acidic and that you need to balance with alkaline foods, but I'm not sure I understand all that. I've avoided red meat, shell fish, alcohol for a year. I don't each much fish either mostly because I don't know which ones are okay. I'm confused.
I’ve been taking Uloric @80mg daily dose for almost 7 months now. The Uloric was doing a nice job of keeping my SUA under 5.0 until I started going back to my old ways in March, eating barbeque pork, grilled steak, prime rib and less leafy green veggies. My SUA steadily rose back up to 6.2 at last testing. I have stopped the folly and went back to the low meats more leafy green veggie diet and drink a minimum of 6 liters of water a day. Hopefully my next testing will not show an even higher SUA reading. I have not eaten any sea food at all but as you can see just the red meats do enough damage for my SUA.
David- This just goes to show there ARE triggers, how ever much people deny it!
I doubt if the orange had any effect. Shellfish is too much a risk for many gouties. I have got away with it , but – like you knew i was taking a risk. [Atlantic prawns]
Many variables effect gout hitting in -and it's a difficult job pinning them down Even meds can't save you sometimes! 🙁
I eat skinless fish, small portion one a week-[Cod- but th info varies on whether this is the best] Note: Skinned- as that is where the purines are reputed to be.
We don't need loads of protein -and in the old days folks just didn't have the option ,but marched 100 miles on foot to do battle often enough!
If you're mostly veggie that's a big plus, anyway and this is just the fine tuning now, I hope.
Bear in mind it's taken decades for this process to set up- so it will take time to find the right diiet and meds approach.
Richard also shows how leaning on meds to do the work is a mistake and is how this genetic immune problem catches us in the first place -by being hidden so long before hitting in, but the body gets fussier with age- and can certainly let us know in the 'gout arena'!
David, I'm relatively new to gout, with 2 bouts under my belt, and the first 2/18/10. After I told my doctor how much shellfish I was eating, he said I must now treat that as a food I'm “allergic” to, in ANY form. Very sad, as I just love crabs and shrimp. Last night we had complimentary meals at a local seafood buffet, a very good one! I had a great big green salad and a baked potato, while husband indulged in the shellfish and seafood array. Just looking at all of that shellfish made my toes twinge, Really! I'm resolved to the fact that shellfish is a part of my life I will never enjoy again. The pain is too fresh in my memory.
It seemed when I first read through the list of foods to avoid that all my favourites were there. I love game, seafood, sardines, anchovies; though wasn't eating them on a daily basis.
At first I cut all that stuff out. I just didn't think it was worth the risk. Indeed I cut out pretty much all meat, chicken etc. while things got a bit more stable and I didn't feel quite the need to worry every time I ate anything. For about 3 months I was almost a complete vegetarian. I then started medication.
I currently take 200mg of allopurinol and things are OKish. As time has passed I have tried some of those forbidden foods – wonderful prawns in South East Asia and other things too. I've not had an issue with them at all. Now, clearly, we have to be careful, to take things a step at a time. I still wouldn't want to have a full meal of, say, sardines to start, followed by liver. But I think once things stabilise it MAY be possible to have some of those foods we love. Just don't go overboard on them; and don't have them every day. Take it slow and see how you feel afterwards.
davidk said:
Hi folks. I've been on Uloric for 3 months and have my UA running below 5.0. Toes were in almost perfect shape for a few weeks, then I had a major flare up. The only thing I can think of is I ate about 10 bites of a crab based appetizer dip and a half serving of orange roughy. It was about 36 hours later when I started havign the flare up.shell fish seem to be a trigger, so I've avoided them for a year, but thought a few bites of an appetizer would be ok. I also am very confused about which fish are ok and which ones are not. I've read about seafood on this site and which ones are acidic and that you need to balance with alkaline foods, but I'm not sure I understand all that. I've avoided red meat, shell fish, alcohol for a year. I don't each much fish either mostly because I don't know which ones are okay. I'm confused.
David, you got lots of company in your boat, however, that does not help or change YOUR situation. Read, study, and examine what you see here. The one “person” you MUST listen to, is YOUR body. What works for one, does not necessarily work for the other (and mostly it doesn't). Learn from the experiences of the other gouties, but listen to YOUR body and use YOUR grey matter to decide what is best for you.
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.
nokka said:
Now, clearly, we have to be careful, to take things a step at a time. I still wouldn't want to have a full meal of, say, sardines to start, followed by liver. But I think once things stabilise it MAY be possible to have some of those foods we love. Just don't go overboard on them; and don't have them every day. Take it slow and see how you feel afterwards.
I think nokka said it best when he said “take it slow.” Everyone's body is different and reacts differently to certain foods. The beauty of a UA lowering drug is that if used correctly and in the right dose, you should be able to enjoy many (if not all of the forbidden) things in moderation.
I guess I should consider myself lucky because as long as I faithfully take my allopurinol I can eat ANYTHING. This month I have even pigged out almost every day with beer…dark and strong. (Yuengling's Black and Tan and Yuengling's Bock..8 bottles a day…going on the wagon in May.)
I eat lots of shrimp and fish at least once a week, usually tilapia, trout or salmon. Meat with almost every meal, even organ meats.
I love gravy on everything.
Knock wood!
Zip, what is your SUA level? It may be that I could eat anything and drink beer on Uloric just as you do on Allo. When I see my SUA rising to over 6.0 I just get a little worried about a possible attack and at this point don’t want to be as cavalier about the prospect as you seem to be. Frankly, your bias against Uloric is legend on this forum, hence my question about your SUA.
zip2play said:
I guess I should consider myself lucky because as long as I faithfully take my allopurinol I can eat ANYTHING. This month I have even pigged out almost every day with beer?dark and strong. (Yuengling’s Black and Tan and Yuengling’s Bock..8 bottles a day?going on the wagon in May.)
I eat lots of shrimp and fish at least once a week, usually tilapia, trout or salmon. Meat with almost every meal, even organ meats.
I love gravy on everything.
Knock wood!
Usually my reading is in the 5's…once in a blue moon I'll see upper 4's.
Last was an experiment for several months at 200 mg. allopurinol (instead of the long term 300/day) to ascertain the effect of furosemide-losartan BP regimen. Reading was 6.7, I had hoped for better and I got scared and went back to 300 mg. allopurinol I will test (at doctor) in a week or two but I expect to see something in the 5's again.
I think at 400 mg. allopurinol I could do the 4's but I see no need (especially since the 300 m.g single pills are so cheap and convenient. With decades of 300 mg. under my belt I am pretty much assured I'll get nothing more than the occasional twinge (even after something horrific like 20 x 8 = 160 bottles of beer in a month. Don't judge me harshly becasue there are only three months of the year like this…and April is ALWAYS one.)
Very ballpark off the top of my head:
I think the math seems pretty simple. Purines convert to urate almost on a one to one basis. Allopurinol blocks urate formation on a proportional basis. Kidneys max out at about 750 mg./day urate. So the ANSWER to gout control is to get enough allopurinol to make sure that there is no more production of urate than the kidneys can excrete.
Sounds tougher than it is. Take 300 mg allopurinol. After a year you likely will have no more attacks. If you DO, then up it to 400 mg. If you DON'T your choices are two: go to 200 or stay at 300.
To me it seems superfluosly difficult to TAKE the drug and then add the burden, probably unnecessarily, of adding torturous dietary restraints. Do one or the other. I find the drug route easy cheap and effective and I cannot speak to the efficacies of diet plans devised before the age of allopurinol becasue I haven't had the slightest urge to try them…visions of Henry VIII and malformed joints on the internet keep popping into my head and the memory of when I actually met SATAN while he was ripping off my right foot.
Richard, I have no special bias against the EFFICACY of Uloric, only the dual facts that it is extraordinarily expensive because of artificially imposed patent protection and it does not have a track record. I would feel the same about a new STATIN introduced last year, or an anti-hypertensive introduced last year, especially if they cost 50 times as much as the drugs they were meant to replace.
I think it is likely that with the proper dosage of Uloric, you will be pain free regardless of WHAT you eat, just as I am…within reason (watch that sweetbread overdose at La Cote Basque…but enough to cause an attack might cost $72,000.)
And for those seeking to control their gout without drugs, I am sure it is POSSIBLE, just as sure as I am that for me that it is not.
But for those who go the drug route there is but one word: ENJOY!
Zip, you seem to be saying something I’ve been wondering. Putting it simply I wonder if after maintaining a low SUA for an extended period we desolve enough crystals to make it possible to avoid an attack when we do raise our SUA now and then. Since it seems to take time to deposit enough SUA crystals for our immune system to find and attack perhaps maintaining low SUA for a good while brings us back to the beginning so to speak.
That's my thinking Richard, but listening to the first of those conference lectures (which thread for some reason I cannot reply to) has scared me.
Although I knew viscerally that ALL crystals would never dissolve, the thought of all those deposits remaining, moving reforming even after YEARS of no attacks is tempting me to go up to 400 mg. and make sure my SUA stays in the 4's. The implication from Schumacher's lecture is that even with no acute attacks the low grade inflamation of those “microtophi” is continuing to damage joints…and some of my joints, knees, lumbar back, and shoulder, give me ENOUGH trouble already. My old view that a tophi once formed and covered was out of harm's way was a bit oversimplistic.
Although my old theory that once you have gout you will never NOT have gout is reinforced a bit.
So I am tempted to draw the conclusion that safety MIGHT dictate that we take our uric acid lower than previously thought and PRAY it's low enough to stop the progressive inflammation.
One must muse whether once you have frank gout in your big toe is it likely you have subclinical gouty inflammation in 20 other joints? An ugly thought is it not?
I guess you're the proof Zip since you've had low SUA for ac ouple decades. Have your joints gotten worse over the years? stayed the same or improved. I was under the assumption (wishful thinking I guess) that as long as you're below 6, you're safe. In terms of the minor inflammation point, I can say that personally I never had any joint pain, but after starting AP after that first crippling attack, I have probably 5 or 6 areas on my body that are always acting up…micro tophi maybe?? It could just be that some people are not as succeptible to the other joints “at first.”
I was a little confused though, when do we know there is no inflammation and at what SUA level? They kept mentioning below 6, but as you said 5-6 range may still not be low enough. I guess it depends on the build up of crystals in your joints…which would then also lead me to believe the sooner you get UA LOW thebetter shot you have at preventing damage. Makes me a bit leary about jogging now though!
Zip, quoting from the first lecture, “bone erosion”, can’t be a good thing. Seems to me that the only way to know if you have this type of “low grade” deposit is from X-Ray/MRI and a doctor that is experienced and/or cares enough to read them accurately. Maybe shooting for an SUA in the 3s might be worth considering. Maybe I should move to a 120mg dose of Uloric and see where it takes me.
One thing we have discussed in this forum in the past is the concept that once the crystals get “walled off” it doesn’t matter how low your SUA gets and surgery is the only therapy left in that case.
cjeezy, maybe we want to get as low as we can when we are going the drug route for managing SUA. Which leaves me thinking more than ever that diet alone is only applying a bandaid to the problem.
Well one thing is clear to me that diet can provide secondary help ONLY and not primary when it comes to controlling SUA . Although food can act as a trigger for a flare up.
My SUA seems to be settling around 4Mg/dl and I intend to keep it around there. As I expect to be more active in the coming months I might even go lower with the SUA.
You know for last 2 years or so my left shoulder has been playing up. I always thought it was due to gym and doing too many pull ups but even when I had been away from gym 3-4 months it would not completely go away. It was never major problem just minor irritation and did stop me from doing pull ups sometimes. I also don't feel 100% in my hip joints.
I am starting to think it could all be interconnected with Gout rather than minor niggle that I was thinking previously.
@VGuy above: Well one thing is clear to me that diet can provide secondary help ONLY
I can understand this opinion well enough as diet has only been advised over the years and never monitored afaik as to results. Meds are mostly a certain result barring reactions so is bound to be used as a guage.
I recently stopped 2 meds that are known to be involved in SUA levels and now am back to basics with diet as the main way to keep SUA in reasonable check. I doubt whether this could produce more than a stabilising effect on SUA, averaging below 6 would be good enough for me.
As discussed elsewhere, the secondary effects of tophi round the system may not necessarily trigger gout ,more likely adding to aches and pains often written down to age.
Without gout in such cases it would never be monitored in any way- neither the rise in SUA due to ageing- *without gout.
What is the background info on this- anyone seem data?
The question in my mind is, “are these minor aches and pains causing bone erosion?” I sure hope not because I have them in almost every joint randomly throughout the day…however have not had a major attack in 6-7 months now (knocking on wood). On a good note, I know people who have had gout for over 20 years and have only recently treated it with meds, and they are walking and moving just fine…so far 🙂
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