October 6, 2017 at 1:58 pm #6104
Simon DuvivierParticipantŦallars: Ŧ -3.85
Much of what I have read here reinforces my own experiences.
I have my own blood urate level tester which seems to be reasonably accurate (+/- 20%) when compared with hospital analyses.
I had suffered little gout over a year and was careless about regularly taking allopurinol.
After a nasty flare-up, I found my urate level was around 7.5 mg/dl. My allopurinol dose was increased from 200 mg to 400 mg/day. In 3 months the urate level was down to 5 mg/dl and has fallen a little further since. However, I have recently had some severe and painful flare-ups.
My doctor was surprised but I have read on this site that attacks can continue for up to two years even with low/safe urate levels. Is that other people’s experience?
December 10, 2017 at 2:48 pm #6105
Bob BertlesParticipantŦallars: Ŧ 0.13
I too had serious attacks being on 400 mg of Allopurinol for almost 2 years. I had large tophi deposits surgically remove from my big toe joints during that time. My uric acid level was down to 4.5..the lowest it would go with 400mg of Alloputinol…with red meat, high fructose corn syrup, shell fish and alcohol removed from my diet. While we were in transition to Uloric waiting for a flare up to subside I read a couple stories of a couple people having to stop all fructose being sugar and fruit from their diet and their attacks stopped. When I did that my attacks stopped. Now I don’t know if it was a coincidence or what but when my flare ups stopped I switched to Uloric and since I have not had a flare up. It has been about 90 days. I recently ate an apple between a meal and the next day my foot swelled alittle and had very mild pain. So I’m not sure what that was. I had a couple bites of apple pie and no problem..so I’m testing the waters so to speak. All I know is that with that being said I see some light at the end of the tunnel. My Uric adic check two weeks ago was 3.7. My Rhum told me before I would have to learn what my triggers are and I think now I can learn from here. Hope you can figure it out. I wouldn’t wish it on anybody..its the worst pain I ever experienced!!
February 16, 2018 at 5:08 pm #6557
hi Bob, if I understand you correctly, you meant that you have little flare up after stopping taking fruit or any foods rich in fructose? I like kiwi fruits and eat two every morning before breakfast. My uric acid level is low (within the range) but I still have pain on my foot. Is the kiwi the culprit? thanks.
December 10, 2017 at 4:26 pm #6106
Jean ClyneParticipantŦallars: Ŧ 37.16
Fructose is definitely a trigger for me, within a matter of minutes could feel pain in toe and usually several finger joints as well a very small amount seems ok but any more , nope. The most frustrating thing is a mild reaction to dishes with a lot of beans, chickpeas, lentils and peas, the vegetable purine high foods that I try and eat as being a vegetarian. If I drink enough black cherry juice, ie. 300 mls. plus in a day, that seems to be really working. I have normal uric acid levels but very poor circulation in hands and feet, would always freeze in our cold winters. If I walk enough and am active, ie. 15,000 steps plus daily then it is also better. Allopurinol removed the pain and swelling in big toe, joints felt better but after taking it for 6 mos. the side effects for me were worse than the gout, headaches, migraines and awful acid reflux. Doc will prescribed uloric for me if it is needed so probably will have to go there in the future. Keeping a food diary and tracking symptoms also worked best for me.
February 16, 2018 at 5:11 pm #6558
hi Jean, you mentioned about the bean. I often cook porridge with many kinds of dry beans (green, red, black, etc.) and eat it once in two days (or once a day). My uric acid level is low (within the range) but I still have pain on my foot(already lasting for 20 days, not very sharp though). Is the ben the cause? thanks.
February 18, 2018 at 1:21 am #6562
Jean ClyneParticipantŦallars: Ŧ 37.16
Beans, peas, lentils are high in vegetable purines which aren’t supposed to be problematic but maybe in some cases they are with some people? I really wonder about that because when I first went vegetarian, I would get some mild symptoms when eating them, that largely seems to have disappeared, as long as I keep sugar intake minimal, that is the hard one for me.All you can do is track what you eat and any symptoms to see if there is any correlation between the 2.
February 18, 2018 at 1:35 pm #6569
Thank you, Jean. I will keep watching the symptoms and see if eating beans could be anything related to the ua level.
December 13, 2017 at 2:42 am #6131
Keith TaylorKeymasterŦallars: Ŧ 1190.26
I’m sad your doctor hasn’t prepared you for gout flares during the first few months of uric acid control. Because it is a common occurrence that most doctors provide help for. In the form of preventative or as required pain relief.
There are no fixed rules for how long this will take. The only relevant fact is that gout recovery takes less time if you get uric acid lower. But other members have said that a cautious approach suits them better.
I know you didn’t mention diet, Simon. So I won’t respond to the comments about food in this topic. Unless you ask me to.
October 6, 2017 at 1:58 pm #5786
Rebecca NahidParticipantŦallars: Ŧ 84.18
Serum urate level current
Serum urate level current share with you all the results of my recent blood test liver and kidney and everything all fine
A few months ago it was 0.27 mmol there has crept up slightly to 0.29 mmol but I know that still puts me safely in the normal zone should I be mindful of the slight increase or not worry too much about slight fluctuations? thank you in advance I have recently returned from Turkey where it is extremely hot 45 degrees most days
October 7, 2017 at 8:55 am #5787
The good news is that you have more data. It affects your average result which is what matters most.
I don’t think the difference between individual results is significant. If you had done more testss, you’d know how stable your results normally are. All I can tell you is that mine randomly vary by a good bit more than 0.02.
The difference might not be totally random though. Depending on the exact circumstances of these two tests, the extra heat might explain the slightly higher result.
In any event, there is definitely no cause for worrying as long as future tests do not come back with even higher numbers.
October 8, 2017 at 5:52 pm #5793
Rebecca NahidParticipantŦallars: Ŧ 84.18
Thank you have other results to go by as well last year which was my first gout attack for years I had my levels checked and it was 0.4 mmol so obviously a little high started allopurinol February of this year and by April it will come down to 0.3 so this tells me that it’s steadily keeping down now which is definitely good news especially as I’m on a low dose of 100mg
November 24, 2017 at 11:55 am #5986
Gout flares more often since getting healthier
I hope you can help me with this?
For the last 15 or so years (i’m 53 now) I would get maybe one attack a year, usually right ankle but occasionally left big toe/ball or left wrist. There appears to be some tophi in my right ear, which appeared about a year ago but does look like it’s getting smaller.
Anyway, because all my doctor would ever do was to give me Naproxin(?) which even though I point out is only a bandaid and not a cure I’ve decided to stop drinking booze, increase my water intake, generally eat better/more healthier and do some exercise. Although I was not massively over weight (beer gut!) I have lost weight and I do feel much better for it. This was around three or four months ago. But in the last six weeks I’ve had two attacks. One started as a dull ache in my left hand then moved straight to my left ankle the second, a week or so after, started in my right ankle and has now moved ball of my right foot!
The thing is, I can’t figure why… Is it possible that whilst I’m generally ridding the gout I have to ride the storm of more frequent attacks for a while?
Thanks for your help.
November 24, 2017 at 12:18 pm #5988
Andy, I know this might be a vanilla response but the first thing you need to do is get a blood test to check your uric acid results and post them here. Only then can you really ‘begin’ to find out the cause for these pains. How do you know these are even gout pains? You mention tophi, did you diagnose this yourself? Maybe your doctor is giving you naproxen because he doesn’t think you have gout at all? Naproxen is used in more then just gout problems.
After answering those questions can you begin to narrow your pains down to their causes.
Good luck mate.
November 24, 2017 at 8:59 pm #5993
Thanks for your reply. I know it’s gout because I had my blood tested a few years ago and it was positive for gout/high Uric acid.
The doc did offer other meds when I pushed them but she told me my gout would probably get worse before it would get better so as I’m a pro musician I didn’t want to risk that, well at the time… I’ve since learned a little more.
I’ll try and get a blood test sorted ASAP. I need this to end!
Thanks for you help!
November 24, 2017 at 9:02 pm #5994
Oh… I’ve seen pic on here of tophi on the ear and mine looks identical, same position same white lumps… But yes, self diagnosed.
November 25, 2017 at 6:43 pm #5997
No worries mate – your welcome.
Having a positive diagnosis for gout normally means taking action asap. I know you have taken positive measures to avoid certain foods and beverages however by not knowing how much you have actually reduced your uric acid levels (if any) by will only expose you to further short term and long term risks.
Definitely get a baseline blood test done before starting any medications and make sure it includes Kidney and Liver function. You’ll be in a far better position to decide which treatment options are open to you once you have these results. If you are sure tophi is present then it may be that a diet change alone will be out of reach and drugs may well be the only option.
Anyhow, get those results and we can go from there.
December 19, 2017 at 11:59 am #6192
Well, I eventually got a blood test and my uric acid levels are 479, which the Dr says is moderately high. My last test was in the low 500, and that was done around a year ago, which is when I was hitting the beer really quite hard .
Kidney function is fine but they didn’t test liver function, unfortunately.
Since I last posted I’ve had a really bad flare in my left big toe/ball joint, which is a location I’ve never had attacked before, and I also ended up with a skin infection in that area too. For that I had a course of Colchicine and Penicillin for the infection. I now have bunion type thing, but the Dr doesn’t think that’s related to the attack. Although it wasn’t there before!
Dr agreed it was tophi in my ear… In fact she had a student in the room at the time and I was kinda used as a ‘good’ example of Gout etc.!
I’ve now been prescribed one a day 300mg Allopurinol.
I hope this is enough info. I’m kind of happy to take the Allopurinol but I’d much rather control with diet, if that;’s doable that is.
December 19, 2017 at 12:25 pm #6193
In your situation, I don’t think a diet-only approach would be likely to succeed. And your gout would certainly be more painful for longer if you tried.
So taking the allopurinol you’ve been prescribed is the most reasonable course of action. Only, if you’ve never taken allopurinol before, starting with 300mg is not recommended. People would normally start with 50mg or 100mg per day and increase their dose every couple of weeks or so.
If you increase your dose progressively while getting regular blood tests (the tests are strongly recommended!), you’ll learn from the results how much allopurinol you actually need. 300mg is OK for lots of people which is why doctors sometimes default to that dose but it should ideally be tailored to each patient.
While you are taking allopurinol, you could also work on a gout diet. It will take some time for you to find a good diet you can live with for years on end.
Once your gout is cured, if you’ve made good progress on the diet front, you could try quitting allopurinol while monitoring your uric acid carefully. Blood tests will tell you if you need to get back on the drug.
Once you are fully cured, you’ll be able try various solutions over the years without risking your health and sanity because it’s a slow disease: curing it takes time but it also shouldn’t come back very quickly.
December 19, 2017 at 1:28 pm #6194
Thanks for this… I’ve been told to get another blood test in February to check how things are going.
As for finding a diet I can live with, what’s the best way of doing that? When I check out ‘ok’ and ‘bad’ foods my head usually starts spinning with all the conflicting information. It always appears that the healthy stuff, green leafy veg, etc. seem to be on the high/med purines list… But then I’m sure I read something about not all high purine foods with cause problems…?! I’ve limited my meat intake to once or twice a week but I don’t eat as much oily fish as I perhaps should due to it being on the high purine list.
Any help or general pointing in the right direction would be much appreciated!
December 19, 2017 at 2:28 pm #6195
I think you should devise your own diet-making process. Then ask the questions which would inform your own process or do your own research.
As you say, your head could easily start spinning with all the information available if you don’t start by deciding what kind of information would be useful or useless.
Lists of high/med purine foods is only one of the ways to go about it. Such lists do not encompass all that matters about it but if that’s the way you want to go right now, fine. You need to start somewhere.
But in order to make it a good start, you need to use accurate lists. And in order to have accurate lists, you need to decide on what basis foods are supposed to end up on one list or another… if you watch carefully the amounts you’re eating, you might want to have lists based on weight or volume. If one the other hand you like eating your fill, you would probably find lists based on the caloric content of foods more useful.
Do I sound like I’m splitting hairs? Let’s look at a “green leafy veg”, spinach: one spoonful of spinach is certainly not high in purines. Spinach has got quite a lot of purines compared to most vegs but it’s still a fairly small amount. There are way more purines in meat. The thing is, how much are you going to eat? If you wanted to live on spinach, you’d have to eat a whole lot of the stuff (you might be surprised how much some people eat) while you could live on a much smaller amount of meat. So if you’re looking at how many purines there are compared to the amount of proteins or energy in a food, yeah: spinach is pretty high in purines.
And in order to end up with accurate lists, you’d also need to put an actual number on “pretty high”.
If that sounds too complicated to you, maybe forget about lists and try something else?
Limiting your meat intake to once a week is simple and does reduce uric acid for instance. But what are you going to eat instead?
The low-purine answer is simple: eggs, milk and so forth. But maybe you don’t want to eat or shouldn’t be eating dairy?
The good stuff in oily fish, you could possibly get through complements. Or maybe ditch meat altogether and eat oily fish once a week instead?
If you’re not eating a whole lot of vegetables anyway, you can ignore their purine content.
But if you’re going to eat lots and lots of vegs on a regular basis (which would generally be recommended), maybe lookup the ones you’re planning to eat in large amounts several times a week? Any amount of cabbage is fine for instance. Lots of vegs are totally fine.
Pills are so much easier!
And in case you didn’t know, allopurinol effectively neurtalizes purines so you can eat your fill of broccoli as long as you’re on that pill.
December 19, 2017 at 3:09 pm #6196
ha ha… here’s me looking for the simple answer!
I’m good to eat plenty of veg and to get protein etc. from dairy so that might be the way forward for now. I’ve cut down the amount I eat over the last couple of months, anyway so I imagine that’s helping the cause, if only a little. As I’ve said before, I’d prefer to be not on medication but great if it helps. The only confusion I have now is, if the allopurinol neutralises the purines how will I know if my diet plan is working?
Just another question, is there any truth in the Cider Apple vinegar can help in lowering uric acid?
Thanks again for your help.
December 19, 2017 at 3:36 pm #6197
As far as purines are concerned, you won’t know how well your diet plan is working until you start seriously cutting back on the amount of allopurinol you take. Gout is a lifetime problem so you’ll have plenty of time for that down the road…
But in the meantime there’s more to diet than purines. Some people get improvements in their symptoms by cutting on sugars, fats or salt for instance (but it should be said that different people report all kinds of things as affecting their symptoms and that it’s easy to be deceived by coincidences). Sugars also affects uric acid proper, not just symptoms. Alcohol too should have an effect separate from purines, as should weight loss. And if you weren’t eating enough vegs, you might see a difference in test results as well after improving that.
You could spent quite some time reading about all the dietary experiments that have been found to affect uric acid…
I don’t know if cide apple vinegar helps. All I can tell you is that it’s not generally recommended.
There are non-drug things which are known to be helpful such as cherries. Your gout problem is bad enough that I would go straight to pharmaceuticals but it’s something to keep in mind if you intend to quit allopurinol down the road.
December 21, 2017 at 5:35 pm #6272
Believe me buddy, the best way to approach this is to keep it simple.
Increase healthy foods and decrease unhealthy foods is all you need to do.
Over complicating your food habits will only cause you to end up with all sorts of obsessive issues in the long run for e.g. when you have; Holidays, Stressful Days, Barbecue Days, Parties, Ice cream family days, etc.
In the 1950’s Gertrude Elion had pretty much cured gout with the invention of Allopurinol. If you couldn’t tolerate that, the Japanese came along in the late 1990’s and pretty much polished Gertrude’s work with the invention of Febuxostat.
In short, take the pill for now, eat everything in moderation and live your life knowing gout didn’t dictate it 🙂
December 19, 2017 at 6:46 am #6190
Eric BolvinParticipantŦallars: Ŧ 15.78
Low Uric acid with 300mg allopurinol. Is it Safe?
So I just had my blood test and now my UA level is 3.6 which according to Lab corp and whatever factors they use is LOW. <3.7.
I take 300mg of Allopurinol.
Not really worried because it’s so close but I think I was 8.0 before treatment.
December 19, 2017 at 10:44 am #6191
The lastest recommendations I’ve seen say it’s OK as long as you test above 3. And even if you test under 3 once, it’s no big deal. So far as I know, there only is cause for concern if your uric acid is super-low for years on end.
That said, allopurinol is not an innocuous drug and so I think it would be prudent to take as little as you actually need. Have you tried taking 200mg?
December 20, 2017 at 5:09 am #6203
Keith TaylorKeymasterŦallars: Ŧ 1190.26
Hi Eb, I’m glad you finally got your uric acid safe. But you really should have agreed on a timescale with your doctor for complete recovery from gout.
From a very quick scan of your earlier posts, I can see you’ve got at least 13 years of old uric acid crystals in your body. So, that suggests to me that you should keep current uric acid levels for now. Then review in 6 months. Once you’ve gone 6 months with uric acid below 5mg/dL AND no gout symptoms, you can gradually reduce your dose to ensure uric acid never rises above 5mg/dL.
Please talk this over with your doctor, and discuss your plan here as well if it helps.
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