Forum Replies Created
-
Posts
-
I understand why you worry about the gout medicines for lowering uric acid, but you have the choice of serious diet control.
There is a lot of rubbish talked about diet, often by people with a vested interest in selling you something. I have no interest other than to help your gout, and there are many things you can do to improve gout diet. As I said, purines are only the third most important thing.
Post a complete list of everything you eat and drink each day in the gout diet forum here, and I will do my best to analyze your diet properly and advize you how to improve it. Please do not leave anything out. If it goes in your stomach, you have to list it, including food weights, and liquid volumes, and all medications and supplements.
The stuff you are doing might give you a little temporary pain relief, but it will not stop uric acid deposits eating into your joints. Gout will keep coming back until you get uric acid to 5mg/dL, or below. It will get worse, and spread to more joints unless you control uric acid.
Please do not do what I did, and leave it too long. You need to learn your uric acid number as soon as you can, then do something to lower it. You should get some good advice on the best way to do this here, once you post your test result number, and your feelings about easy uric acid lowering meds vs hard and strict diet control.
kineret said:
My current Uric Acid level is 6.1.
That's the problem!
Must be at 5 or below.
Better to go a few months much below that to speed up dissolving old crystals, which is why I am about 3mg/dL on max 900mg allopurinol per day.
It shortens the bad journey to make way for a better one – hopefully a very long, gout-free journey.
What a fantastic first post. Welcome, piyo.
It sounds like your doctor is a waste of space, so you are going to have to train him, or change. Training doctors seems like a poor choice, but trust me – it's good for the soul.
The allopurinol treatment is good, but you will need to take care of testing and results. Get tested every 4 weeks until things stabilize, then you can test less frequently, but never less than once per year. Results must never be above 5mg/dL. I opt for a few months well below this to speed up the process of dissolving old crystals. I'm happily at 3mg/dL with 900mg allopurinol per day. I would never have contemplated this without the love and support from contributors to this forum, so your appreciation of my friends makes me very happy. Someone might be peeved to be not mentioned, which is why I resist naming names, but everyone who contributes here is making a difference to the way gout is perceived and treated.
With uric acid extermination at this level, pain thankfully becomes less of an issue every day, but it does need dealing with. I'm lucky to have a bottle of colchicine pills, but I rarely need them. I trust them to stop the pain getting worse, but I'm much happier with ibuprofen, which has always helped me through the gout pain. You need to find something that works for you, safe in the knowledge that, with uric acid under control, the need for pain relief diminishes day by day. Anti-inflammatories seem the obvious choice, but anything that works is good. I have come to realize that, once you know you have the uric acid under control, pain management becomes much simpler – just ask the doc or pharmacist for something that works. Personally, I'd leave steroids until I worked through everything else, but if they work for you, then that is good.
Enjoy beating this, and thanks for your inspiration. Voltaren gel in the head probably means the pain is affecting your aim, but things will get better.
Keith (Gout Admin) said:
The hard part, for me, is explaining what I think is happening in provable ways.
I just read a quote that clarifies where I am with this:
??If you can't explain it to a six year old, you don't understand it yourself.? ~ Albert Einstein
hansinnm said:
Just ONE question: How come that one cannot find anything, anywhere how MSU is changed into UA or how and what will scrape the tophi off your bones, except a scalpel?
In our earlier discussion on uric acid organic chemistry, I wrote about factors affecting that change, and later mentioned that I believed I'd found a missing factor.
In simple terms it is concentration.
The hard part, for me, is explaining what I think is happening in provable ways. The relevant aspects of organic chemistry include dynamic equilibrium, Le Chatelier's Principle, and disassociation. Most simple examples and explanations I have found relate to gasses. The stuff I've found on uric acid (primarily by searching on the chemical formula for the acid and it's salts) appears to support my view that, at the lower concentration of uric acid, the sodium ion disassociates itself, and uric acid becomes free again to be gently pissed away (that's a technical term for excreted by the kidneys). I do not yet have enough theoretical knowledge to explain this properly.
I have to own that even writing that short explanation leaves me quivering in a corner with fears of boredom. The thought of researching and summarizing a complete explanation makes me run for the hills. I'm focusing on proving or disproving the practical results of uric acid lowering treatment. It has taken me nearly 2 years to begin testing my discovery that lower uric acid directly affects faster tophi dissolving. If it works, it may well take me another two years to explain why.
In my defense, Hans, what would you rather do: sail round the lake; or spend hours writing an explanation of how sail shapes and tacking angles mean you can reach any point on the lake irrespective of wind direction?
Interesting list, and I cannot add much to it.
However, though gout manifests itself, amongst other things, in bone-eroding uric acid deposits, it is really a metabolic disorder.
The metabolic reasons for producing too much uric acid are unclear, but they are becoming more understood with each passing year. Genetics is a very complex subject – way beyond me – but several different genes have been associated with uric acid processing in the kidneys.
The fact that this can be exacerbated by poor diet is often overplayed, but something we should all be aware of, though not fixated by.
Perhaps the genetic disorders that influence excess uric acid are linked to other conditions. It is usually very difficult to separate nature from nurture, so assessing whether we were born to have gout, or brought it on ourselves is often difficult.
In my view, the only positive thing we can do is insist on good uric acid control and respect ourselves through better diet if this is an issue. We cannot, at least yet, change our genetic makeup.
Sorry this is not much help in answering your question. Perhaps others with several health conditions can chip in.
No, you are right, odo, the maximum is 2 months (effectively 8 weeks). I just asked today when I got my latest results.
Now I'm a happy bunny. Urates down to 0.18mmol/L (3mg/dL) and prescription for 50.4g allopurinol.
If that don't shrink the tophi, nothing will.
Jeff B said:
Dare I ask if anyone has tried this Krystexxa? I've been away from this forum for a long time, but the gout? She never stays away for too long, so I'm back again.
[1] Done tried AP, colcrys, uloric, probenecid, indocin, etc. Might as well try a new one too if it doesn't kill me.
[2] And no, triathloning, mountain bike racing, a great diet, and no alcohol wasn't enough to keep the beast at bay.
I'm with limpy on the confusion about why you are considering this new treatment, when allopurinol is so effective.
Have you read the facts about Krystexxa? This is no easy option.
[1] I'm concerned that you give a string of gout medicines that are a mixture of uric acid lowering treatments and pain relievers. Has your doctor ever discussed a proper gout treatment plan, or explained why the medications that you have tried are not effective? I only ask this, because if your doctor cannot help your gout with the meds that have been around a while, he/she is unlikely to be much help with something as difficult to manage as the often unreliable Krystexxa.
[2] Exercise and diet can help a good plan, but are pointless in themselves. By which I mean, if your goals are confused between uric acid lowering and pain treatment, then you can never determine if lifestyle changes are helping or hindering the plan.
?
1. Get a proper diagnosis
2. Plan what you want to achieve (short term pain relief, long term gout fixing, or both)
3. Take the appropriate treatment and supporting lifestyle changes, making sure you monitor the effects and adjust the plan if necessary
4. Repeat 3 for the rest of what should be a pleasant life free from gout pain
The gout fix plan is relevant.
My first look at PatientAssistance.com looks interesting, but I need the views of US residents to truly assess it's worth.
Their page on the Takeda Patient Assistance Program (Takeda manufacture Uloric) looks comprehensive to me, and they have other pages for other medications, but I could not see anything about Colcrys. Perhaps this organization has the same views as I do on the morality of applying a patent to colchicine.
Excellent news, Bhart.
It's a shame about the nausea with febuxostat. It's also listed as a side-effect of allopurinol, which I take. My prescription instructions included the advice to take with a full glass of water and with food. I have experienced very slight nausea at times, but never when I have obeyed those instructions.
Uloric, according to the manufacturers, can be taken with or without food. You might like to do a little self-experimenting to see if this makes any difference to you.
Monthly testing for uric acid is fine. It is wise to have liver function tested at the same time. I'm not certain about kidney function tests, but your doctor will advise.
zip2play said:
It is absolutely appalling and those outside the United States can never grasp how unreasonable, capricious, and cruel the system can be unless you are a multimillionaire or lucky enough to have made it to Medicare.
The last thing I would like to do is appal you, but it is due, at least in my case, to a total lack of experience and information.
i have written elsewhere about the horrendous tax burden that we face in the UK. The rich can avoid poor quality National Health “Service” by taking out private health insurance, or just pay for private treatment, but anyone on average pay cannot afford it after all the tax we pay. We have to endure bug-ridden, cold hospitals, long waiting lists, and a host of other problems. But, they did save my life, and I'm now getting my gout treated for about $10 per month, so I shouldn't moan too much.
?
Does the cruelty lie in a situation where you can only get affordable health insurance if you are too healthy to need it? If that is the case, then I am truly appalled.
On the other hand, I was surprised recently to read that someone was refusing to apply for free or discounted Colcrys because they required copy payslips. In a country that demands profitable companies, did she really expect discounts without proof of income?
?
For gout sufferers, there may be something we can do to research cost-saving options. E.g. we could approach suppliers of relevant products and services to arrange discounts for referrals from here. I would be more than happy to donate all advertising revenue and commissions from GoutPal Interactive if I was certain that the money goes to those who need it.
Does anyone have any ideas about how we might get something going, or have links with a relevant charity that I could approach?
odo said:
?
Now we can turn our attention to trying to convince Drs that only a couple of weeks (1 month at the most ) is necessary before an effective dose can be prescribed. 3 months, which seems to be the default here in the UK, is waaay too long and, as Zip says, likely to cause unneccessary suffering.
3 months!
?I get my checks at 4 week intervals. Someone must be doing some thinking, cos the allopurinol is packed in 28 tablet boxes.
2 weeks is the minimum, as that is how long it takes for the dose to be fully effective (or at least I read that somewhere on the Internet, so it must be true). It takes one week to get test results at my doctors, so I figured an extra week was not worth worrying about.
I do not know how widespread the procedure is, but at my doctors, you make your own appointments with the receptionist or online. No way would I wait 3 months.
[edit]
I just remembered. One joker tried to increment from 100mg to 200mg. The 100mg made very little difference, and I suggested 300. He stuck to his guns, and gave me a prescription for 8 weeks. After 4 weeks on 400mg I returned claiming mis-hearing. He got the message.
[/edit]
hansinnm said:
Keith (Gout Admin) said:
?
Look no further than? my recent 300mg allopurinol myth article. ??
Now, THAT IS the most sensible thing you wrote about Allopurinol all year.
?
I am glad to see you are calling the 300mg Allo dose a MYTH.
No Gout God and no doctor SHOULD tell anyone what the right dose for you, a gouty, is. Only YOUR BODY and YOUR BRAIN, provided it hasn't been “washed”, SHOULD tell you what is right and what is wrong. All a doctor should do is helping you and your body to find the RIGHT dose.
It's too goddamn bad that most people have been submissive to the notion that they must be told, or must do as they are told, how to live their lives!!!
Nicely put, Hans.
zip2play said:
As we know antibiotics are FAR more likely to have an?adverse, even dealdy,?allergic reaction than allopurinol. Have you ever heard of a doctor prescribing a sustandard dose of antibiotics for weeks or months to avoid the possibility of an untoward reaction? Of COURSE not, the EFFECTIVE dose is the one prescribed.
?
Have we not both witnessed time and time again the agony suffered unnecessarily by poster after poster started on a 100 mg. dose of allopurinol. It is NEVER enough. One might call a gout attack slight while one is not having it…but often for the siufferer a single unnecessary attack can be Hell on Earth.
What happened to the Hippocratic prime dictum: FIRST, DO NO HARM! A substandard dose of allopuinol DOES harm.
?
Doctors prescribing the go slow are just being stupid, and?thoughtlessly repeating the same stupidity, ?especially? in light of the real possibility that NOBODY ever died from a dose of 300 mg. allopurinol. Any evidence to the contrary?
You cannot say that for aspirin, penicillin, antidepressants, tranquillizers, and probably even diuretics. Rare is the drug that is as safe as allopurinol.
Comparing allopurinol with antibiotics makes little sense. We know that antibiotics are there to kill germs, so underdosing is like arming soldiers with a sausage – pointless and dangerous. Allopurinol is more akin to an intelligence agent tackling insurgents that have established themselves for years. A cautious approach ensures we defeat the baddies without harming the goodies.
?
A far better comparison is something like carbamazepine. This, like allopurinol, has a rare but potentially deadly side effect where, for no apparent reason, white blood cells called eosinophils go out of control and kill you. Guess what the recommended dosing strategy is for carbamazepine?
No, it is not 300mg to start, it is 100mg followed by increases of 100mg. The maximum is different – 1200mg compared to 900mg with allopurinol. The principle is the same.
?
On a personal note, 400mg for me was little better than 100mg – probably because I'm a fat bastard. I never tested a 300mg dose, because I took my own decision to jump from 100 to 400 instead of the recommended 200. The exact numbers are not significant, but the principle is. As someone wrote recently – first do no harm.
?
Where is the evidence?
Look no further than the report I mention towards the end of my recent 300mg allopurinol myth article.
An 80 year old man started treatment with 300 mg allopurinol a day for
asymptomatic hyperuricaemia. Uric acid concentration was measured as
part of a routine biochemical profile, and was 517 ?mol/l. Six weeks
later he developed asthenia, anorexia, fever, diarrhoea, jaundice,
abdominal pain, and pruritic skin lesionsHe died.
?
Now, I have to point out that this is very rare. It is not isolated, and there are similar cases reported in PubMed. This just happened to be the first I looked at, but death at 300mg was enough to convince me that the slow but sure approach is effective and safe.
I acknowledge everyone's right to do it their own way. Start with 900mg if you want, or blow your life savings on a feast of febuxostat. Just get your uric acid down. Preferably sooner than I did. zip2play is not wrong, he just has a different view than me (and probably easier to understand).
?
[If limpy is reading this – that, my friend, is a lecture]
bestest,
I'm delighted your uric acid is finally under control. Your experience with the pain is nasty, but I'm convinced that things can only get better from now on.
I went back to the beginning of the thread to get a feel for what is happening.
You have come a long way in a few months. My heart and soul are willing that the next few months are even better.
Wow, I've seen stuff before about fructose and gout, but some of the research was very questionable, so I put it aside. I'll take more notice in future.
Your fructose resource states:
fructose may be described? as ?alcohol without the ?buzz??.
Now that is serious!
Oh, is that what you were trying to do?
I thought you were asking “Why, all of a sudden, has gout increased by ~50% in the last 20 years?”
I believe it is due to the rise in obesity and iron consumption. It is the job of pharmas to exploit that. It is the job of the FDA to protect pharmas. It is our job to tell the truth and help gout sufferers. If we can add in a little humor, it makes the day brighter, but with “tophaceous Rumplestiltskin” I think I'm getting a laughter overload. I hope I'm laughing WITH you. I'd never laugh AT you.
This is like having a cat.
Spends hours playing where it shouldn't, then brings home a mutilated corpse, or revolting, half-dead animal.
Decorating it blue and red don't make it interesting, or wanted.
Use your miraculous charting skills to plot gout against obesity and iron intake. Or just read my gout diet pages.
zip2play said:
Remeember too Rsholl, that liver damage shows LARGE swings in liver enzymes. Slight elevations of ALT or AST do not automatically signal the need for a panic reaction. Even doubling of the upper values is not usually indicative of anything serious.
?
Did your liver enzymes rapidly go back to normal after discontinualnce of the allopurinol (if you can remember back that far.)
?
Perhaps you should revisit the issue before you start suffering severe joint (and probably cardiac and renal) damage. Untreated gout just keeps getting worse and worse.
Zip2play, do you have any easy-to-understand pointers for acceptable and unacceptable liver function test results?
I have come to realize that liver and kidney function tests are an important part of uric acid lowering treatment, but I do not have a clue about interpreting the results. I leave this to my doctor, but given that I usually see a different doctor every time I visit, and so far I have known more about interpreting uric acid test results than most of them, I would like a little more control.
If it is too complicated for easy-to-understand, give me something hard-to-understand, and I will start work on it.
rscholl said:
?I am cutting back on all things purine the best I can do is get down to 6.1.
Don't forget that food is normally less than half the source of purines. Most comes from your normal cell turnover. If you are overweight, or have a fasting/feasting lifestyle, this will put a massive load on uric acid. So will some meds, and excess iron in your diet.
Zip2play, I am not merely trying to cover my own back.
Though hundreds of people contribute here, many thousands take the advice without joining the debate. Also, I want Penny to know that I care, and I am not just another gout website owner who dishes out a few set pieces just to sound good.
I know that the risk of allopurinol hypersensitivity is very low. However, if 1 in the thousands of people who read this gets hurt by going on higher doses of allopurinol before they are ready, then I have failed.
The slow and steady pathway advised by the specialists works every time. For impatient patients (and I am one of them), there is a shortcut that I have described earlier – just double your dose, and halve your time to the next dosage review appointment.
In the grand scheme of things, following the slow and precise path might add a few weeks to the path to gout freedom. Colchicine plus anti-inflammatories plus analgesics will ensure that those weeks are pain free. A few weeks of discomfort after several years of gout attacks seems insignificant to me, but I am always interested in refining the finer points of a treatment plan if it does not quite suit the individual.
As for Hans, his? kvetching is not pointless. It has the noble benefit of keeping me interested and entertained.
Surgery is a last resort to clear up infected tophi, or ones that are impairing mobility. It is only a temporary solution, so if allopurinol is definitely out, then you must consider uloric or probenecid, or a combination of both.
You do not say what your uric acid level is, but you need to get it to 5mg/dL or below. Similarly, you do not say how bad your lifestyle is currently, but even stringent lifestyle changes rarely improve uric acid level beyond 2 or 3 mg/dL.
I wrote 1) deliberately to wind Hans up and it worked.
I wrote 2) because it is true. Documentation and references are widespread, but this one is pretty clear from the British Society of Rheumatology (uric acid scale adjusted to the more common mg/dL):
Recommendation
Initial long-term treatment of recurrent uncomplicated gout normally should be with allopurinol, starting in a dose of 50?100mg and increasing by 50?100mg increments every few weeks, adjusted if necessary for renal function (see further), until the therapeutic target (SUA<5mg/dL) is reached (maximum dose 900mg).I wrote 3) because I believe it is my primary duty to encourage the dialog between doctor and patient, so that gout patients know what questions to ask, and can understand the responses. Where doctors do not listen, or are unwilling to research current best practice, then I encourage gout patients to insist on proper treatment according to the latest guidelines. I support everyone who wants to take a more active role by monitoring their own uric acid, but I believe they have a right to get this service from their doctor.
Penny,
I do not want to disagree with zip2play, who knows more about gout, and most other things, than the rest of us put together, but I have an issue with 300mg allopurinol.
It is certainly better than 100mg, but the determining factor must be your uric acid level.
Set a target – 5mg/dL is best, but I prefer to go lower for a few months to speed up getting rid of the old crystals. This also cuts the time you need to depend on pain relief.
Take enough allopurinol to reach your target, up to a maximum of 900mg.
Get tested at least once per year, but every 4 weeks when you change dose until you reach stability.
In a few months you can contact me to see if I can change your username to usedtohaveouchiefeet.
The generally accepted minimum for uric acid is 6mg/dL. The more conservative recommendation, and the one I regard as most acceptable is 5mg/dL.
5 gives a greater margin for safety, and I believe this is important, as levels can fluctuate, and the risk of going over 6 is uric acid deposits that will destroy bone, cartilage and tendons.
Where would you rather be on your walk to gout freedom? In the middle of the highway or safely on the sidewalk?
It is not your doctors choice. Insist on treatment.
zip2play said:
and 15 Indomethasin.
When I?had my first attacks many years ago, I was prescribed indomethacin (Indocin) and it?helped but I found it unpleasant BUT I was prescribed 3 x 25 mg./day. It sounds like you should have been taking more.
?
Yes, that is a point I often forget when I am talking about pain relief. Gout deserves something a bit better than normal over the counter doses. Whatever pain relief you take, always ask the doctor or pharmacist what the safe maximum dose is, and if the med can be combined with a different type of drug between doses.
Ah, the dreaded elbow tophi. How is one expected to act like a gentleman with lums on the elbow?
I am treating mine to a 900mg per day blast of allopurinol. Too early to report progress yet, but I'll let you know.
