Forum Replies Created
-
Posts
-
The problem is that it has to be probenecid.
Also any from the list here:
http://en.wikipedia.org/wiki/Uricosuric
(Primary uricosurics)
would do just fine – but none of these is available in my country.And if one would like to experiment with furosemide then – suprise suprise – the effect will be just the opposite from the intended.
Look here:
http://www.ncbi.nlm.nih.gov/pubmed/11229436
“These results indicate that furosemide may decrease the urinary excretion of uric acid and oxypurinol by acting on their common renal transport pathway(s).”
And that’s the problem…I am an underexcreter of uric acid. This was confirmed by 24 hour urine collection many years ago (even with 4 liters of urine I was still only on the low end of the range of uric acid excretion). Besides this, the same thing applies to calcium – am also an underexcreter of calcium with slightly high levels in blood. This means I may have weak kidneys…
But also 23 and me test says that I have mutations in uric acid transporters – but these may also mean nothing and ordinary doctor will tell you that every person has them. That’s the problem with this 23 and me test – the exact impact of these mutations (and sets of mutations) is unknown.
In any case it would be good to have uricosuric added. I asked a few doctors. They do not have any idea about that – the usual answer is: allopurinol is enough, if the production of uric acid is stopped then why would you need an uricosuric?
Could you believe that… they tend to twist the things around, just to get rid of the patient. With gout it is supposed to be no brainer – it’s so common, but because of this it’s undertreated.The problem with uricosurics here is that only probenecid is doing the good job OR has any clinical confirmation. So if probenecid is unavailable, then simply there is no option – nobody will prescribe anything if they are not certain that this will help. There are many drugs that are supposed to help but the final clinical outcome is that they do not help in comparison to the control group. This is what doctors try to avoid, and I am also concerned about it. If the drug is only slightly effective (and if it is any uricosuric it will be) then it’s no use…
The problem is also with confirming that I have gout. As I described, I am not entirely convinced, the doctors even more so.
A few days ago I came up with yet another idea. I started drinking 5 liters of water a day and turned on the heater in my room. It’s summer here but it’s very very very chilly. And voila, 1,5 days after that the inflammation is gone… or I should rather say the level of inflammation was 30% (so it was a chronic inflammation, not an acute attack) and now it’s like 5%. And hopefully it will get better. I have to keep drinking water…Keith, what’s the story behind taking 900 mgs of allopurinol?
I’m still thinking about the correct dosage for myself.
The fellow sufferer above wrote:
“In most of those cases it is for people will moderate to severe tophi.”
Did you have tophi? Or this dose was achieved during normal adjustment process?
The problem with me is that I am rather large (120 kgs and 2,3 m tall) and already this translates into the necessity of higher dose. But that’s not all – I also have problems with muscle breakdown (so called myopathy). So this is what hasn’t been taken into account. Even if normally with 500 mgs of allopurinol my uric acid level is 4 mg/dl then after an attack of myopathy it will get higher. So to counteract this, my dose has to be higher. I am also supposed to get drugs for the myopathy (finally) which maybe resolve these problems all together.At least for my doctors tendinitis without joint symptoms is atypical.
For them: no red toe? It’s not gout. As simple as that.
Most unfortunately, because thanks to that assumption I’ve been suffering pain and loosing opporutinities for so many years…
And there still a little confusion but I believe that it is gout. I wish someone could tell for sure, just test me and tell for sure.Anyways, a few more words on treatment options.
1. It is good to use diclofenac cream and put it in the areas of tendonitis.
2. For many years I used to take vitamins and supplements of all kinds – I also have other problems beside gout. Recently these vitamins finally worked (the correct supplementation was only possible after 23 and me genetic test – I was one of those people who really benefited from this test). But there is one downside of this supplementation over the years: I metabolize glucose and fructose very very quickly. I get hot after even small meal.
That’s crazy. Many supplements have insulin sensitizing effect and I am one prominent example of such an effect. You probably know how fructose causes hyperuricemia – it’s all because metabolic pathways are overwhelmed by fructose and ATP is depleted and ATP is degraded to uric acid. There is also another mechanism – because of energy aboundance purines are produced which then are degraded to uric acid.
In my case both of these pathways are very fast and efficient. That’s why I get a little attack after every meal. I know – small meals frequently would be better but it’s not that easy.
That’s why Allopurinol does not work completely – with 500 mgs of Allopurinol I get 4 mg/dl of uric acid in the morning but not during the day, after meals (I will have to test for it). This dose was self-adjusted to achieve this level. 600 mgs (in divided 2 doses) seems to cause side effects/nausea.
So… this increased metabolism due to vitamins is not a good thing. Like always, too much of good thing is bad.We should definetely talk about this more, because…
Tendinitis, exactly my problem. This is what is called an atypical presentation.
This’s also why the final diagnosis of my gout has not been confirmed.Even worse than this!
I spent a week in a Rheumatology department (rather not to confirm gout, rather to confirm something like ankylosing spondylitis), and nothing was really confirmed but I was assured that it can’t be gout. I even wanted to take colchicine, just to try… they did not concur – “in no way it can be gout” etc.
And I kind of believed them because I had never had any joint pain/inflammation (back then).
A few years passes and… I kind of have joint inflammation. It always gets worse after large meal etc. etc. – it looks and feels like gout. So that is kind of a proof.
So now I’m on 500 mgs of Allopurinol (started just 6 months on a regular basis – before I used to take some but then I always stopped).It is entirely possible that some kind of additional factor causes gout with this atypical presentation of tendonitis. Simply imagine that there are damages to the tissue that cause chronic state of inflammation in the area. There are multiple consequences of this. Leukocytes are already activated and in large amounts. They are ready to attack and a few small urate cristals may be just enough. Inflammation may cause swelling, thus problems with circulation. This always ends with even more cristal deposits. Why? Imagine a pipe and a narrowing in it. Every larger particle in the sewage gets stuck in this narrowing and then it gets even worse and worse (a kind of bad bad positive feedback). Same thing must be with blood and urate cristals. In this case “the narrowing” is combination of the following factors: initial cristals -> inflammation -> swelling -> decreased blood circulation -> due to decreased blood circulation cold causes even more cristal deposits and then the vicious circle continues…
Maybe we both are genetically inclined to gout associated tendonitis because of inherited decreased blood circulation?
The problem is that after these 6 months of allopurinol my joints (and tendons) are still inflamed…
So, what I am going to do now… I am going to have so-called pulsed ultrasound therapy in the areas of my tendons. Don’t know if this name is completely correct but it’s purpose is to increase circulation, so it may be any other therapy of this kind. Right now I also use ice. But it has very bad side effect – it may simply cause more urate to cristalize. Bummer.
I don’t know if this therapy will be possible, because now I live in a very remote location, that’s why I would like to hear from anyone who had such a therapy performed.
I don’t what else can be done to confirm that this is gout… and to treat it…
Probenecid here (in Europe) is not available (and I’m underexcreter), so what I only can do is to take celery seed extract. It’s a weak diuretic and antiinflammatory.I’m seriously considering febuxostat…
> 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.
> 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…
