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Been reading this forum for a while now and have found it invaluable.? I thought some of you may be able to give some advice on my next steps.
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Having constant pain in feet and knees that is not debilitating, but very worrisome.
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A little background:
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I am 35, 6', 165 pounds, so I am not your typical gout patient.? The couple things that I do that may have put me in this situation is that I have always really enjoyed my beer and I have never had the best diet.? All of my other health is in good order.
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My first gout attack (my big toe) was in February of 2010 and at the time I really did not know it was gout.? I did not see a doctor, but after about 2 weeks the attack subsided.? I did do some research and after the fact did realize that it was most likely an attack of gout, but did not think about it too much since I felt fine.? Not too long after that I even started the p90X workout and had no issues at all with the toe or any other joints for that matter.? Later in 2010, I would occasionally have a little pain in?the toe (a twinge as they say), but nothing that really bothered me.
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Fast forward to March of this year and I start having a pretty good pain in my right foot, but not in the toe.? I let that pain go for a week and it went away, but decided to see the GP any way.? Since everything looked fine, he just listened to my story about the earlier attack and the pain in the foot and said it definitely could be gout.? He prescribed some indomethacin and ordered blood tests.? Wouldn't you know it, that night the attack starts in my toe and by the next day is a full blown attack.? So I go back to the GP and he visually diagnoses as gout flare?and off I go for the blood tests.
Everything comes back fine and my UA is only 5.2, but was taken during the attack.? Take the Indo and within a few days all is normal again.
Over the next month or two however I began having pain in my foot that was fairly constant, but mild.? Really a crunchy feeling which did not stop me from doing my daily activities.? As I moved into the summer I started having pain and tighness in my right knee, which has progressively gotten worse.? I decided to see a Rheumatologist to see if all of this was related to the gout.? Doc basically took a look at my knee and said there may be some fluid, but did not think it was gout-related, but could be.? I explained all of the pain I was having ( which was now constant, but not debilitating) and hes sent me for the battery of tests.? This was in September and all tests for RA, etc. came back normal and my UA was now 6.0.
Over the next few months the pain continued to be there and began affecting my other big toe (twinges) and I also started having soreness and pain in my elbows and wrists.? As I said earlier, none of the pain has been so bad as to stop my daily life (though I am afraid to do any real exercise), but it has been in constant waves.? I decided after a few more months to go back to the Rhuemy and get more tests which I did.? He called me a few days later and said test was normal and I made him give me the number which was 6.6.? Doc unfortunately seemed to blow me off and said if it is really gout it will come back and hit me hard.
A few weeks later decided I needed a second opinion and have now scheduled an appointment with a Rhuem that is really well rated, but have to wait a few more weeks.? In the meantime, on Christmas Eve I had an attack in the same big toe, but was able to get it in time with the Indo and it subsided within two days.
Sorry for the long-winded post, but wanted to give background.? What really scares me is that I am reading that the constant crunchy pain may be due to the 6-7 range I am in and I am starting to think I may need to do something before there is permanent damage.
Would love to hear everyone's thoughts on if they think all of this pain is gout-related.
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Thanks in advance.
Warning: one paragraph may be nothing more than a poor attempt at humor. I'll leave you to spot which one. Blame the idiots who told me laughter is the best medicine.
There are some similarities with the recent Gout, weight and diet ? Questions – a patient, rightly worried about early gout, and wanting to avoid it getting? worse. With the doctor emphatically withholding treatment until it does get worse.
But, I believe every gout? sufferer is an individual who deserves individual treatment. It seems clear from your explanation, that you have a uric acid problem. It is in the early stages, but even your doctor agrees that it is likely to get worse. The classic view of treating the symptoms, not the cause.
I suggest you ask for a 24-hour urine analysis. This will determine if? you are an under-excreter of uric acid, or an over-producer. With that information, you know if you need uricosurics or xanthine oxidase inhibitors. If your doctor still refuses to prescribe treatment, you have choices:
1. Seek appropriate natural cures. These generally will not provide massive reductions in uric acid, but your numbers indicate that a 1 to 2 mg/dL drop should be enough.
2. Get your lawyer to write a letter, asking why treatment is being withheld. I can supply the appropriate references for the progressive, destructive nature of gout, and the professional guidelines for maximum uric acid levels after an acute gout flare. This may provoke action, or it may provoke return references that present an opposite view. Legally, you are at the point where there are different medical views, so you are unlikely to win a case for compensation. But strategically, it may be enough to get the prescription you need.
3. Lie. Tell him you are getting attacks every month that are so severe, you cannot get to visit him.
Whichever choice, or combination you go for, you need to keep a close eye on your levels with frequent blood tests.
You do realize this is all your fault, with your “nothing that really bothered me” and “none of the pain has been so bad as to stop my daily life.” Doctors expect true men with gout to sit with tears in their eyes recalling tales of suspected broken toes, agonizing crawls to the bathroom, nights spent sobbing in their sleep as their partners suffer fits of concern. Half an hour of that, and they'll give you anything you want.
Keith,
Thanks for the prompt response.
To be clear, I am changing Rheumatologists because I beleived the first had laizze faire attitude about it, but he did say that if I wanted he would put me on something.? To be honest that is not the response that I wanted.? Would rather have a frank discussion about where I am, what I can do outside of medicine, and then a plan if that did not work.
My appointment with the new Rheumatologist is on the 24th of this month, so I should have a new baseline for my UA levels shortly thereafter.? If it goes higher and moves into the 7-8 range I think it may be time to try the drugs at some point fairly soon after.? If they are lower than the last reading, then maybe it makes sense to try some of the other diet changes, etc. that may help get me in a safer range.
As far as natural cures for lowering UA levels by a point or so, what do you reccommend?? I have tried many of the wives tales such as ACV, without much success and I don't think that would lower levels anyway.? Currently, have cut out beer and will do so until the appointment to see if that changes the numbers any.? May have a glass of wine or two, but no beer.
Once again, thanks for the response and if you have any ideas on the natural cures that would be great.? Also, would it make sense for me to wait on the cures, lifestyle changes until after the next reading?
Thanks,
DL
Personally, the only natural cure I have tried is weight loss. I had limited success with this. Slow weight loss did reduce my uric acid numbers, but I did not have the willpower to lose enough weight.
Generally speaking, skim milk has been shown to lower uric acid levels. Various other reports have been made for various other compounds. My view is that it is too hard to contemplate this when it is so easy to get allopurinol.
I am lazy in that regard, but I respect anyone who tries the natural approach, as? long as they do it right.
Random changes in lifestyle prompted by Internet chatter is not the way to go.
I've outlined the plan with regard to testing, and I feel that anyone serious about this approach has to start with the 24 hour urine test. You will also need to get the support of your doctor for blood tests at least every 4 weeks, or buy a uric acid tester. It requires a very logical approach of test-change-test repeated ad infinitum until you are certain that uric acid levels are at 5mg/dL (0.30mmol/L).
Again, personally, I just do not have the patience, or the will, when there is an easy way out, but I offer my free and full support to anyone who wants to start a serious attempt at control using non-pharmaceutical methods. For anyone who wants to do this, I do not have a formal process yet, but start by posting blood uric acid levels, uric acid excretion rates, an agreement for regular testing or a home uric acid test kit, and a promise to commit to a methodical approach to diet changes (including exercise).
Until things firm up diagnosis-wise the only dietary recommendations I would make would be to eliminate beer (spirits or wine are better) and increase dairy.
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Probably your diagnosis will come from yourself when you join the throngs of us who have suffered a horrific, unmistakable,?crippling podagra event that you KNOW you will never allow to happen again as long as you live.
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I sympathize with anyone in the “is it?-is it NOT?” phase, with urates running around 6.0. A big red crippled foot with a urate of 8 is so much more straightforward.
So….
Going to the new rheumatologist tomorrow morning, hoping that some answers will come.
Wanted to see if anybody had suggestions of the questions that I should make sure that I ask to get the most out the visit.
There are obvious questions, but is there anything i should ask for or about to make sure I am not missing anything.
I will post after the appointment with new numbers, etc.
Thanks,
DL
Get him to agree on medication to achieve a target level of 5.00mg/dL (~0.3 mmol/L).
Maximum 2 weeks initial low dose (100mg) Allopurinol to check for allergic reaction then straight on to 300+ (you can try, but he will probably demand?1 month, but that's better than the 2 or 3 he might say if you don't start the bargaining process)
Good luck
So I had my appointment yesterday with the new doc.
Overall, a very good experience so far, as this doc really seems to have a good handle on gout and was impressed with the research and knowledge that I had done.
First step was to do some more blood tests, specifically:? UA levels and some tests for some rare tick borne illnesses (due to some different symptoms) just to rule them out.? Based on previous tests he has basically ruled out RA and based on my history he is convinced that I have had 3 gout attacks in my right big toe.? He is still not sure that some of my other joint pain is related to the gout, but did not rule it out either.
Also he is having me do a 24-hour urine test and had new x-rays done on my big toe.? Dropped off x-rays and he called me back within 2 hours.? Said that I defintely have osteoarthritis in both big toes ( said this in office also, based on movement), but no gouty erosion signs.
Thought my case was quite interesting based on the fact that I do not fit profile and with where my UA levels are.? Next steps are to see where my levels are and the results of the 24 hour test.?
He agrees that levels like mine, while not going to cause imminent damage, may need to be treated with urate lowering therapy particularly if I have another attack.? He also did state that many people who need therapy need to get under 4 to get relief, which jives with everything I read here.
This guy really seems to know his stuff and did not treat me like I was some crazy person like others.
So I got my results?of the blood test back on Friday.? The tests other than for Uric Acid were normal, so I think we have?now ruled?out most anything but gout for what has been causing my issues.? UA levels were 7.0, which is? now my 4th test and each time the number has been slightly higher.? Below is breakdown of tests:
- 03/11:? 5.2 (during attack)
- 09/11:? 6.1
- 12/11:? 6.6
- 01/12:? 7.0
Spoke to the doctor and it now seems clear that I have a uric acid problem.? He?wants me to schedule a follow-up after my 24 hour Urine test, which I am doing today, to talk about next steps including a discussion about drugs.
Seems like this guy is the real deal and?we are on the right track.? Don't really want to go on a drug, but at this point I am not sure I have a choice.? Seems like only other choice is to drastically change the diet and?I don't think I?could follow-through long term with that.
I will give a further update after next results.
DL?
Don't really want to go on a drug, but at this point I am not sure I have a choice.
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I think that pretty much expresses what each of us has felt when first confronting the disease.
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Nice to see your confirmation of a lowered serum uric acid DURING an acute attack.
So got the results back from my 24-hour urine test and my excretion was in the normal range.? After a talk with the doc about habits (alcohol, etc.) he decided to put me on 40mg Uloric.? He stated that Uloric was a better option for some who drinks alcohol fairly regularly and he only decided this after asking me the questions.? Before the questions he had actually talked about Allopurinol.
I have been taking it now for two days, so really too early to tell how it is working.? I can say that I have had no flares and my feet actually feel a little better today.? Knees have kind of a dull ache which is different than the more burning pain I was having prior to starting the drug.
I have a follow-up appointment in a few weeks to talk with the doc and get full bloodwork done.
Wish me luck!? Hoping this is the beginning of getting life back to normal.
I will keep everyone updated on the progress
Just one more thing since someone may ask:? Cost to me for a month's worth is ~$15.? I also believe that I can get the card and possibly pay nothing, but not totally sure.
So I just got my blood test results back after 5+weeks on 40mg Uloric:
UA level is now 3.3, with no kidney or liver abnormalities. I have made no real diet changes, other than trying to limit beer (though still having some). Just as a reminder these were my numbers prior:
03/11: 5.2 (during attack)
09/11: 6.1
12/11: 6.6
01/12: 7.0
03/12: 3.3 (on Uloric)As far as pain goes it has been hit or miss, but I have had no real flares. I actually had a couple days where I almost felt like I did prior to all of my symptoms. I got really excited, only to experience more pain in the last week or so. Most of the pain has been in my right knee, right great toe, right foot, and right achilles and it is more of a burning pain than anything else. Spoke to the doctor who said off and on pain is to be expected and could last for months, but that at my levels I should eventually feel much better.
He has me going for blood tests every 3 months for at least a year and wnats me to come into the office a month after each test to discuss.
So I can happily say that I think I am on my way to recovery and hopefully by summer I will be pain-free.
I will keep everyone updated and thanks for the respones. To Keith, I can honestly say that without this site, I would be in a much worse place today than I am, so thanks and keep up the good work.
DL
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