August 20, 2013 at 1:30 pm #15146
My first post here.
My medical history is so long that I won’t even begin to try to describe it (to be honest: I’ve tried but I’ve given up), so it is possible that other factors may come into play but let’s attack this problem from the gout’s point of view.
I am 33 years old male, 6 feet 8 inches tall, weighing 240 pounds (BMI = 26,7 -> slightly overweight).
I’ve been struggling for the last 10 years with different pains and general fatigue.
It all started when I broke my ankle and the fragments of bones there were loosely floating around the joint causing enormous pain and inflammation. But after a half year the edema disappeared (the pain was still there). It took 3 years for the doctors to finally perform exploratory arthroscopy. Otherwise, nothing could be seen on MRIs and other scans. Since then I don’t have edema and very rarely high fever.
Then other symptoms appeared, that I now attribute to gout. There was inflammation and pain around the joints, in tendons, and especially in places where tendons are exposed to cold: outward side above the knee, outward side above the elbow. But there was no inflammation inside the joints, like in the big toe. Nevertheless, the doctor prescribed me with Allopurinol, based on the laboratory test of SUA at 7,5 (for some labs this result was still within the normal range for men). Unfortunately, the dose of 100 mg of Allopurinol for a few months did not work at all, and it was hell on earth – attack after attack. The highest test result a few years ago was 8,3 mg, so it’s high.
The SUA levels on Allopurinol were somewhere around 6,5 so too high for a gout sufferer as I read here. Even without knowing this I tried to persuade the doctor that we should increase the dosage, of course to no avail. So I took this Allopurinol on and off for a few years and it always kind of proved that this is not it. This is not gout. This was also confirmed by a rheumatologist, so I was completely confused.
NSAIDs did not help either.
A few weeks ago I was diagnosed with hyperinsulinism (can be considered as pre-diabetes). Up until now, all the fasting glucose levels were OK, and nobody bothered to perform a glucose tolerance test (insulin curve). Suddenly all of it became clear. Increased insulin after meals means increased “bad” metabolism of glucose and other nutrients, causing uric acid production.
Simply: it’s metabolic syndrome, baby!
BTW: I like mg units, not mmols. With mmols you simply can’t imagine a particular quantity, with mgs you know that it’s a particular quantity within a (deci,micro)liter of blood.
Because of this hyperinsulinism diagnosis, I went on a diet. So this will help with hyperuricemia too.
So, I set out to stop the inflammation completely. I now take:
– Allopurinol 100 mg (planning to increase to any dose necessary, but it will be hard with my doctor to get even to 200 mg)
– Meloxam (it’s a NSAID, you may not know it, but it doesn’t hurt your stomach like other NSAIDs do, so it’s worth considering (novel idea #1))
– cherries (novel idea #2: like a few people said: cherry extract may not work, it may be overly sweetened, prepared from the wrong stuff, especially if it is not medicinal grade, etc. For me, only frozen black cherries work, and they work miracles. At least you can see what you really eat).
– vitamin C
– celery seed extract
And it was celery seed extract that made all the difference, just stopped the inflammation in the tendons: now I start to feel inflammation within joints (probably after allopurinol), so it’s a good sign: most probably IT IS gout.
My question is: is it possible that the inflammation caused by gout took place almost entirely in tendons, and not joints? Do I really have gout? Doctors confuse me…
I guess I will know anyway after some time with allopurinol at the right dose, but your insight may be valuable for me.
This inflammation caused me muscle pains and cramps (answer to another thread on the forum, I should probably crosslink to it). The massive inflammation (massive in the sense that almost every tendon is affected even for example in neck) in tendons caused also muscle inflammation, and this in turn made them very susceptible to different stimuli. As of now I am almost diagnosed with hypokalemic periodic paralysis (I won’t get into details what it is, use Wikipedia: but it causes muscle pains when your blood potassium level is low and that complicates diagnosis even further, because one day your tendons hurt (and maybe even some joints, but not especially), the other your muscles hurt, etc. etc.).
With inflammation out of the way, I am much less susceptible to the attacks of muscle pains, so it looks like hypokalemic periodic paralysis is out of the way too (not entirely, but still)!
The overall inflammation also caused fatigue.
Novel idea #3:
Well, there is a way to confirm if you really have gout (question from another thread). You need to take D-ribose, it’s side-effect is hyperuricemia. This in turn causes gout flare-up. Worked for me like a charm (caused familiar inflammation in tendons and even in joints, but I was still not convinced that it is gout: seriously, I must be blind not to see the obvious). Unfortunately I would not recommend this way. You may provoke gout attack, even when you don’t have gout yet. Under some special circumstances this way may give you a clue, however.
Novel idea #4:
Why does Allopurinol cause gout attacks? (question in another thread, don’t know if it is answered in another thread on the forum, anyways here goes nothing). The answer to this question was to be found in one of more recent research papers (don’t remember the title, too tired to look for it now). It looks like uric acid is some kind of mediator of inflammatory response in body. When for example bacteria are destroyed by immune cells, they are more or less digested, which leads to production of large quantities of uric acid. This causes migration of even more immune cells to the site of inflammation. But there is a problem with uric acid crystals. When they are attacked by immune cells they also release uric acid thus once inflammation starts (gout flare-up) it is hard to stop. With Allopurinol on-board the crystals are dissolved and this once again causes local uric acid concentration increase. This in turn once again leads to a chain reaction (more and more immune cells) and a gout flare-up.
That’s it for now. Looking forward to your answers and comments.August 20, 2013 at 4:43 pm #15148CujoParticipant
From what I know, the most effective way to diagnose gout is to take a sample of fluid from the joint. Then you’ll be 100% sure that you have the disease or not.August 21, 2013 at 12:21 am #15150
Good point @cujo. However, it is not a perfect test. Presence of uric acid crystals confirms gout, but absence doe not deny it. I’m assuming that MickMick’s rheumatologist did actually take a joint fluid sample and analyse it immediately. Anything less than that disbars him/her from calling themselves a rheumy.
I’ll get round to answering the other points when I get time, but where has common sense gone in the medical profession?
The American College of Rheumatology make it quite clear that, unless kidney problems or other health problems indicate a higher level of up to 6mg/dL maximum, the maximum level for safe uric acid is 5mg/dL. For people exposed to prolonged cold (e.g. fishermen) it should be a lower maximum.
As allopurinol is so safe and cheap (as long as latest dosing guidelines are followed), it seems sensible to me, to take sufficient allopurinol to maintain uric acid below 5 for several months. If symptoms persist after several months, then look for something other than gout. A simple common sense solution that gives diagnosis and treatment in one go. In exceptional circumstances it might not be enough, but in most cases of elevated uric acid, it will work.
MickMick’s homework is to read http://www.goutpal.com/972/allopurinol-medication-why-it-hurts-to-get-rid-of-gout/ – easily found if you type Why does Allopurinol cause gout attacks? into the search box near the top and bottom of every page. That article was fairly novel in gout circles, when I wrote it many years ago. It seems many in the medical profession have not caught up yet.August 21, 2013 at 1:17 am #15151
> From what I know, the most effective way to diagnose gout is to take a sample of fluid from the joint.
My rheumatologist wanted to sample the fluid (at least one of them along the way, others said that it was not gout because it was such an atypical presentation – only tendons plus muscle cramps, now it seems that muscles and tendons pains are two different, unrelated problems). However she did not perform this herself, only one of her colleagues. But he did not find any fluid on the ultrasound, so he did not draw any. And he did not want to take a look at another joint, only the one that was in the referral. And I paid for the visit (a considerable amount) from my own pocket. Why the doctors are like that? I know stories beyond imagination… That doctor was in a hurry, so it was logical and simple just to get rid of me, save some time, but take the money. This resulted in my diagnosis delayed for several years…August 21, 2013 at 8:31 pm #15152
That’s a sad and sorry tale. Unfortunately not unique. I still haven’t found time to go through all the points, but I want to assure you I’m here to help as much as I can.
You raise many interesting topics that I’ll discuss in more detail later. For now, the most important thing we can do, in my opinion, is to get a plan together to fix your gout. I’m guessing the first thing is to persuade your doctor to update your dose. In my experience, the best way to do this is to find out why they are reluctant to do this, then shoot each argument until you get your way.
That’s a general rule – specifics will vary from doctor to doctor. How do you feel about this? I’ll definitely find time to support you on specifics – just can’t find time for general chats at the moment. (Not an excuse – I’m trying to recover from websites hacked).August 22, 2013 at 1:52 am #15153CujoParticipant
It is sad that we are often stuck with incompetent ignorants, especially when it comes to our health and even our lives. In my country it is not so easy to jump from doctor to doctor but if you have this opportunity, do not hesitate to find one that has a brain.August 23, 2013 at 12:37 pm #15155
> I?m guessing the first thing is to persuade your doctor to update your dose. In my experience, the best way to do this is to find out why they are reluctant to do this, then shoot each argument until you get your way.
Yup. I used to explain to doctors the caveats of my diseases long long time ago (now I’ve stopped), but it usually ended with them saying one of the following: ?You rely too much on the Internet?, ?I can’t prescribe this or that because we have such and such rules (not true of course)?, ?I can refer you to a specialist?. And when I saw specialist it was all the same all over again.
Find out why they are reluctant?
That’s how it goes here. They’d say anything just to get rid of you quickly (one explanation). To be quite accurate, there are exceptions to this, but very rare.
This is also because I’ve had many different symptoms (because of, among others, extreme vit. D deficiency and vit. B12 deficiency), so I was treated as a nut case by some of doctors, despite clear indications that something was wrong, tests results out of range… (another doctors’ saying: ?everyone has a test result out of range once in a while?).
Now I know I have many symptoms from many related and unrelated disorders. It was quite hard to figure it out (another explanation, objective difficulties). The diagnosis, that I arrived at, was probably out of reach for a regular general practitioner, because they specialize at everything and nothing particular at the same time (yet another explanation).
One guy used to say that doctors are a selected subpopulation that very quickly learns a lot of material (but usually forgets it quickly too). The subpopulation is not selected for logical reasoning (well, it’s simple – if you have memory capacity, you don’t have reasoning capacity), so if they come across a case that was not described EARLIER by medical sources, all of their diagnostic routine pretty much breaks down. That’s yet another explanation, and though I find it sad, it is kind of most convincing for me.
This is the only explanation that accounts for strange things that happened, for example strange doctor’s mood swings, when doctor is asked a question that requires to answer a little more than recalling facts. Nowadays facts can be found on the Internet, what we require of doctors is putting them together… that is not easy as it’s not, add to that doctors’ attitude, and you are doomed.
How do you deal with such attitudes and such difficulties, when they are so elusive, hard to define and describe? To solve a problem, first you have to define it. How do you fight a system that promotes only routine procedures and does not allow any experiment (no matter how innocent it is)?
I’ve developed a few ways, a few tricks of my own, but that is rather beyond the scope of this post (when the most interesting part starts, they always say that this is beyond the scope, right?), but now that I’m pretty sure that I will feel better I should start a blog or something and share my experience… Up until now my life was totally on hold because of all this.
Anyways, right now I take Allopurinol from my old supplies. 150 mgs for now and we’ll see the results, it’s been only a week, and in about a week I am going to see the doctor. As far as I remember, on a 200 mg dose I went from 7,5 to around 6,0 mg/dl, but with ongoing attacks of gout.
But now I’m trying to employ the diet (however failing half of the time), taking celery seed extract, cherries and potassium citrate (alkalizes urine) and drinking a lot of water, so 150 mgs may be just enough, we’ll see.
Celery seed extract, cherries and potassium citrate – they all work, I tried them separately over the years, but never got to try them all at once. Now I take all of the working things together (plus NSAIDs), and that is great.August 24, 2013 at 4:47 am #15157
NSAIDs are fine for a while, but all have long term risks associated with prolonged use. Uric acid control is the only option, and I particularly like your approach of combining allopurinol with diet.
Certain food items have been shown in studies to lower uric acid. Skim milk and vitamin C are particularly effective.
Personally, I think it is wrong to alkalize urine using chemicals. Probably better than doing nothing, but I believe the healthiest option is to alkalize by making the right food choices.
I’m always very wary of quoting Internet sources to doctors. Some are receptive, but most have ego problems that make them believe your trying to usurp them. I find it far better to quote medical sources. The American College of Rheumatology have excellent guidelines backed by scientific research. In this country I refer my doctors to the British Rheumatology guidelines. Some don’t like it, but they cannot refute it.
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