August 29, 2020 at 7:06 pm #10069
I have made a few short posts before, but to recap I am 60, very physically active for my age, originally from the UK, but have lived in Massachusetts for the last three years.
I had my first gout attack in Jan 2019, which lasted about a week, and after which I followed a low purine diet for a whole year with no drugs hoping it would fix things. I did not stop alcohol completely but it was in moderation.
In March 2020 I then had a smaller flare affecting my big toe after a hilly 2-3 mile walk. I took a UA test which had come down from 6.8 to 6.7 after 12 months of consistent discipline!
I decided to go on allopurinol and was prescribed initially at 100 mg and now I am on 200 mg. I requested the increase, as I had been informed by my GP that if you got the UA level below 5.0 it would start to dissolve crystals in the joints. Recent test was 4.8.
This week I had a telephone consultation with the rheumatologist, who said to me that it takes FOREVER to dissolve crystals from the joints. She also informed me that if you had the perfect diet it would still not negate the possibility of gout, although it can be a contributing factor, as it is primarily the production of uric acid by the body, especially as you age that causes the problem. You have to keep taking the allopurinol for life. Also, a UA test only indicates the uric acid in the blood and has little to do with crystals present in your joints. The two are separate.
This advice seems to go against what I had read and hoped, that I could get the UA down, dissolve all crystals and then come off allopurinol and maintain a low UA with low purine diet and no alcohol. It seems I was wrong, but I may still try it!
When you are on a Gout Patient Plan, it’s OK to review targets and progress. You might want to switch to a Gout Dieter Plan. But do you have everything in place to switch safely? If in doubt, start a new Gout Student Plan to run alongside your Patient Plan. Just keep that Patient Plan on track until you are certain you’ll benefit from switching plans.
August 29, 2020 at 9:09 pm #10070
The one thing that really matters is that your last uric acid test was good. Stick to the drug for a while and you ought to be cured. You can try to quit afterwards but it’s obviously too soon to think about it.
You’re not testing your uric acid often enough to have a good picture of what’s going on, especially if you’re not carefully controlling hydration, physical activity, the last meal you ate and so forth.
Chances are, you don’t know how to do a low purine diet in the first place since the information out there is terrible. And purines isn’t the only thing that affects uric acid: protein intake, minerals, fructose and so forth also matter (to different degrees depending on the individual).
Speaking of which… did your odd tingling go away? And did you only get unexplained dizzyness that one time?
August 30, 2020 at 6:25 pm #10071dj2424Participant
I think it’s also quite interesting that your doctor told you that if you got your UA level below 5 is when it would start to dissolve crystals in the joints. Did your rheumatologist agree with that assessment too? I have been researching if 5 is the threshold that everyone needs to try to get to or if 6 and under can work in regards to debulking for others too.
Did you have any symptoms associated with the old crystals dissolving at all during the time when your UA number went down from 6.7 to 4.8? Either way I think you did a great job catching and jumping on top of this early which is why you’re doing well and looking towards the end of the road now and feeling a bit disappointed with what you heard. You shouldn’t be. If you can consistently stay at 5 and under for a good 6 months to a year and manage to confirm with DECT imaging (easier said than done) that those crystals have mostly dissolved, then there’s no reason you can’t try to stop the allopurinol with your doctor’s careful supervision coupled with frequent UA testing to make sure it’s staying within the threshold. Now whether this manages to work for you or not is something that you’ll have to see as the results have been anecdotal at best from what I’ve seen during my research to get any firm conclusion.
I think it’s worth trying. Worst that could happen is if it doesn’t work and your UA number starts going back up you’ll just have to quickly get back on the allopurinol to get back within range with the knowledge that you tried everything to make it work.
August 30, 2020 at 6:57 pm #10072
Thank you for the response and in answer to your questions first, the feet tingling did go and the fever and dizziness was a severe but single event. Currently, knees are stiff and burning and the consultant wants to run a blood test to rule out rheumatoid arthritis. I have had stiff knees for many years, probably work related, but my feelings are it is worse due to the “allopurinol effect.”
My diet change was fairly drastic. I used to eat meat almost every day, including offal, seafood, etc. I changed to a mostly vegetarian diet with a small portion of chicken and salmon twice a week. I drink water, coffee and teas, no sugary drinks, but some biscuits and cake. Where is all this too much fructose supposed to come from?
This does seem to me, to give credence to the idea that diet is only a small part of the high uric acid condition and that the vast bulk is from the body itself. Still confused on the issue of crystals dissolving because of what the consultant said about “forever.”
How do you know when you are “cured” and what is a while? I will be sticking with the drug for now, but there does seem to be contradictory viewpoints on the mechanism of these crystals, joints, etc.
Lastly are the self test UA gadgets worth buying?
August 30, 2020 at 8:41 pm #10073
I didn’t want to address the specifics of what the doctors said because they’re technically wrong (or at least GC’s recollection is) but basically right. And unpacking that would have involved a lot of repetition and seemed too much bother.
Some guidelines tell you to use 5 as a target if there are tophi, and one might confuse tophi with garden-variety intra-articular deposits which is where the confusion might be coming from. But you actually want a good bit less than 5 (if possible) to dissolve tophi, and likewise it’s often a good idea to aim for 5 to get rid of regular deposits.
Last time I checked, 6 was still the official target. And so far as I know, there is no actual evidence that 6 is ever too high but there hasn’t been that much research and it would make sense if 6 was too high in some cases. The problem is that curing gout is slow and people are understandably impatient so it’s very hard to tell what’s going on without performing unethical and costly human experiments for which no funding is forthcoming. A lower level of uric acid should cure people from gout faster but we don’t even know if the difference is material in the average case.
My rheuma didn’t care much about targets and was happy with values much lower than 5. Generally, my experience with doctors is that they use the target which is most convenient for them in particular context. The next time you speak to them, don’t be surprised if they say something different. That isn’t much of a dereliction of duty considering targets have never been the point! The main reason you’re seeing a doctor is that these drugs can have serious side effects involving much more complex things than uric acid, and that should be the main consideration in determining the dose you ought to take. If it wasn’t for these side effects, based on the evidence I’ve seen, I’d say the target for the first year of therapy should be around 3.5.
I’ll write more later about “forever” and other stuff.
August 30, 2020 at 10:48 pm #10074
Any joint troubles you get early in the treatment are probably gout but it’s still prudent to rule out other diseases (if you can afford it). My experience is that doctors underestimate how strange symptoms can be at that stage since what you experience might not be inflammation directly if the “hot zone” is small enough but for instance its effect on a nerve or even a general immune reaction (fever and so forth).
There are also rare side effects of allopurinol so one should not neglect things like tingling if they persist. Gouty inflammation on the other hand shouldn’t last long outside of a large joint with uric acid under 5.
It might feel like forever both to gout sufferers and to doctors who are used to a different timetable but I’ve not seen any evidence for gout proper persisting more than 3 years of effective treatment. But given the huge uncertainty in how long treatment might take, I guess it’s best not to over-promise and “forever” does tick that box.
Rather than “contradictory views”, I think there’s a great deal of uncertainty about the role of the immune system in crystal formation, where crystals end up outside of joints proper, what it takes to get rid of them and the consequences of the damage they do. Obviously some statements are going to be contradictory but who claims to have it all figured out? The important thing is that we know is that allopurinol as well as other ways of lowering the amount of uric acid in one’s blood work.
If you’re interested in anecdotes, the last time I recall using crutches was after 14.5 months of effective pharmaceutical treatment and the last time I recall experiencing something distinctly attack-like which made it difficult for me to walk was 21 months after starting that drug for the last time. I’d naturally say I wasn’t cured then but even now, I’m not sure I’m totally cured because minor symptoms have many potential explanations. So I’d say I’m at leas mostly cured. Certainly it looks like the treatment ended up making a big difference in my life.
Even if you can get DECT scans, ultimately you’ll be the judge of whether you are cured or not. There is hope it might not take so long in your case because it sounds like you got an effective treatment early.
Of course uric acid comes from the body. The point is that diet affects the amount. I’ve managed my uric acid without drugs for about 10 years and based on that experience, you are over-interpreting a single uric acid result (“I took a UA test which had come down from 6.8 to 6.7 after 12 months of consistent discipline!”). Sure, I’ve had tests returning 6.7 or thereabouts after an attack but most tests returned much lower values (as low as 5.2) without drugs. In some cases, fixing gout with diet would be hopeless. In other cases, a willingness to change one’s diet would be sufficient to get rid of gout. In between there are a great many cases in which it’s not clear if diet alone could do the trick but obvious drugs would do a much better job. In most cases, a combination is probably ideal.
The thing is, getting diet right is much harder than drugs. Maybe you got it figured out but you say “I used to eat meat almost every day, including offal, seafood, etc. I changed to a mostly vegetarian diet with a small portion of chicken and salmon twice a week.” as if it was simply a matter of eating fewer corpses (or worse: a matter of abstaining from red meat, a recommendation worse than useless for people who have low to moderate iron levels). Aside from the related issues of excessive gross protein intake and essential amino acid deficiencies, there are purines in plants and especially in meat substitutes and other supposedly healthy foods people use to replace animal products. I recall one study in particular in which vegans had on average significantly higher uric acid than meat eaters even though they tend to have healthy habits.
If you have a need for numbers and can not get proper lab tests regularly enough, it obviously makes sense to try some gadgets. Just don’t trust them until you have mastered the technique and compared the results to lab reports.
August 31, 2020 at 11:15 am #10075
Thank you for this long, time consuming, detailed and feely given reply on a complicated condition, that is difficult for the layman to unravel. It is all food for thought and no pun intended! It is a very useful site for people dealing with this challenging problem. Regards G
August 31, 2020 at 7:26 pm #10077
I gave you numbers from memory which I hadn’t even converted properly (I’m not used to this uric acid scale).
I had an opportunity to double-check and while I remembered the bottom of the range (the lowest results were 5.3 and 5.4), my highest lab results were actually 7.1 and 8 when I was controlling UA with diet alone. These two results are years apart and the third-highest on diet alone was 6.5. So when you’re not on drugs (or on an ineffective dose), be mindful of potential outliers. My values on drugs are much more stable.
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