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ME said:
no more clotted cream, bunties and jam, fish & chips or shepards pie
Shepherds (or cottage) pie is now a deliciously different affair. The lamb (or beef) mince is replaced by turkey mince (gobblers pie?), mixed with plenty of diced veg. Half the mashed potato topping is replaced by sweet potato and/or swede & carrot mix, with low fat creme fraiche.
with a pint or two of Guiness!
Beer replaced by red wine or cider – a nod to the ACV guys, but I drink it before it sours
and continued success with the T-Shirt biz.
THAT T-shirt was my Xmas gift from my loving family. Bastards! (doesn't apply to GoutMom, bottom right, very much in the dark)
According to an organisation called NHS, the UK launch of Adenuric (febuxostat brand outside USA) was March 10th (it has been approved for months, but supplies were almost non-existent). I wonder if your doctor has heard of this organisation??
[sarcasm explanation to non-UK residents: The NHS – National Health Service – pays for our drugs and pays our doctors (out of our exhorbitant taxes)]
Nate, I know it doesn't help to think that you might have a few more months of this, but I've finished (for now) my review of the length of time for uric acid crystals to dissolve.
Ignore references to Reiter's – you are exhibiting a fairly common gout clearance sequence. Just tough it out for a little while longer, and you'll soon be back on the piste.
ME said:
Last three attacks, blood revealed serum gout levels <5 or “quote” in a normal range. I have had one positive report 5 years ago but the levels were off the charts crazy high, like 165 or something? The three attacks were over a 2-3 year period. Well if this excruciting pain and swelling and redness and heat isn't gout then I would like someone to tell me what it isn't?
I answered the second part above, but forgot the first.
The 165 is a different scale. There is an explanation in the Reference section (link near top of every page. There is also a uric acid calculator to convert between the two most common scale. Your 165 converts to a more common 0.165 mmol/L which is safely under 3mg/dL. A level that has probably just invoked insane jealousy in most of the readers here.
Ooops, we posted at the same time.
Gout & Reiter's Syndrome are both forms of arthritis. Gout is caused by uric acid crystals. Reiter's is caused by unknown reactions to trauma, infections, and other unidentified or unknown things (sorry for being vague, but definitive answers are difficult to find).
The 'arthritic process' is common to both, i.e. inflammation of the joints. It may well feel like gout, and it might have some symptoms, and possible some (indirect) causes in common, but it is not gout.
In that respect, the gout medicines and alternative treatments designed to lower uric acid are of no use to you, but gout treatments that lower inflammation may be beneficial.
ME, Allopurinol or other uric acid lowering drugs will not help you because you do not have high uric acid and you do not have gout.
Colchicine is not gout specific – it works for many other inflammatory conditions. It might work for Reiter's Syndrome, but I really have no idea. A rheumatologist might be able to recommend other anti-inflammatories, but you need to find a rheumatologist who specializes in that condition, as it seems to be very difficult to treat, from what I've read.
The anti-inflammatory aspects of a good gout diet might help, but counting purines is pointless. Better to just try an anti-inflammatory diet.
zip2play said:
how on Earth did you manage to lose 4 pounds a week?
Necessity
Thank you all for the kind comments.
hansinnm said:
However, he never started me on any management plan because a UA level of 9mg/dl was THEN not considered serious. And he was a professor teaching at the university med school. The only thing he wanted me to do, go on an Atkins diet
I never thought I would read anything so scary. If you can't trust a med school prof, what hope is there?
Please raise usability issues in the Tech stuff forum. My aim is to provide the best gout information anywhere, but I cannot do this without some feedback about areas that need to improve. I'm especially interested in suggestions to improve the forum guidelines.
From your description, I cannot see that you have gout. All the symptoms you describe are compatible with Reiter's Syndrome (reactive arthritis). In fact the reaction to trauma seems the most likely indication that Reiter's is the culprit.
A confirmed gout diagnosis is possible with uric acid levels less than 5mg/dL, as urate moves from blood into joints and other tissues, but you must have higher levels prior to this. Have other blood tests shown higher levels? Have you had joint fluid analyzed?
zaleeu said:
Idiot Doctor put me on 300 . I read now on the web that its way to high . So I have now lowered the dosage to around 100 . Google is my friend :).
Google is not your friend if it finds sites with irresponsible advice.
100mg is a good starting dose to discount the very rare risk of severe allergic action. If that reaction does occur, the only option used to be a finely incremented dose increase to try to desensitize your reaction. Now there is the option of febuxostat. This does not apply in your case, zaleeu, as you have already shown that, like most people, you have no adverse reaction to allopurinol.
The correct way to dose allopurinol, febuxostat or any other uric acid lowering program is to set a target uric acid level for the “cleansing period”, then increase the dose until that target, or an acceptable compromise is reached. The cleansing period can take several months, but once you have gone 6 months without a gout flare, and there are no visible signs of uric acid deposits (tophi), then you can relax the dose to maintain a uric acid level around 6mg/dL. It must never rise above 6.5 mg/dL
Please arrange a schedule of blood tests, and get the right dose to keep your uric acid level in the 3 to 4 range for a few months. That is your best chance for reducing the risk of more gout flares.
It's also the best chance for us to see more of your exceptional art, Nick. For that, Google is definitely my friend
Some more options for finding gout trials:
List organised by country:
http://www.controlled-trials.com/links/
Included on that list, but specific search page:
http://clinicaltrials.ifpma.or…../index.htm
http://www.anzctr.org.au/trial…..earch.aspx
http://apps.who.int/trialsearc…..fault.aspx
I hope monaco (and any other readers who venture into trial territory) will report back on their experiences.
ppkul said:
Today's UA reading : 4.8
I suppose now crystals will start dissolving.
Will my UA reading increase when the crystals start dissolving? Or will Allopurinol keep it at same level (bellow 5)?
btw today the pain is much better
. Have not taken any pain killer for last 2 days.
Nothing is certain with gout, so it is important to get regular uric acid readings. Much depends on how much uric acid is already crystallized in your body. The only thing you can really affect is the rate at which it dissolves, and this is mostly determined by how low you get your uric acid. A few months on a higher dose of allopurinol should take your readings down further, and lower uric acid means faster reduction in crystals.
It's a percentage game really. The lower your uric acid, the faster you get rid of crystals, and the less risk of a gout flare.
With luck, you might just have had your last gout flare
, so maybe it's best to carry on as you are doing and only consider a change if you get more painful flares.If you use the list above, it is best to hold down the Ctrl key when you click to break out of the frame.
The link for the email notification service is http://www.centerwatch.com/cli…..rials/pns/
To all gout researchers (including FRCRresearch): If you want to promote your trials, please feel free to do so on this forum – the more information the better. Also consider raising your profile by posting messages about the results of your trials, or any other information of interest to gout sufferers.
To all gout sufferers considering taking part in trials, the following is a list of currently known research (it's supposed to be international, but has a very heavy bias to USA):
There is a free email update service.
Febuxostat is approved by the appropriate European bodies that now govern UK medicine restrictions, therefore it is entirely appropriate to get a private prescription and import the properly manufactured febuxostat.
Uloric and Adenuric are the official brands, so I see little problem with these.
Dodgy off-label products are an entirely different thing. It is not just a legal thing – taking medications from unregulated sources is very risky. There are enough side-effects reported with controlled versions without adding in risks from poorly controlled manufacturing sources.
China (the home of the removed link) is a wonderful place for so many things, but copied drugs and medical equipment are not one of them.
Hi zaleeu,
I see no reason why your feet should not return to normal, now you are on allopurinol.
Just be sure you get frequent blood tests to ensure your uric acid level is safe.
Sorry Jack,
I do not want this forum to get side-tracked into unapproved drug sources. I actually hate censorship, but I really do not want to be associated with the murky world of dodgy importers.
Please keep this thread for advice on legitimate purchase advice. (i.e insurance deals / buying assistance etc)
With 15 years of gout, you are riddled with uric acid crystals, and need to aim for 3 – 4 mg/dL to speed the cleansing period. After 6 months without a gout flare, and no visible signs of tophi, you can relax allopurinol dose to stay around 6. That will stop you getting flares after a few months.
To cope with the flares, the best choice is odo's suggestion of colchicine. Ibuprofen and naproxen are other common gout pain treatments, but much will depend on your gastric tolerance.
The exercise routine looks good, but do try to take some breaks during work hours to stretch the legs. Also remember to keep hydrated.
If you get to the point where you simply cannot stand the pain, a steroid shot is very effective, but these also reduce the natural cortisone production, so should be used sparingly as a last resort.
The action of allopurinol is quite clear. At the right dose, it stops virtually all uric acid from purines from food, and about half the uric acid from purines from our own body tissue (purine metabolism). It can do nothing about uric acid that is dissolving from uric acid crystals. This explains why doubling the allopurinol dose will not double the decrease in blood uric acid. It also explains why allopurinol takers should not worry about food. They should avoid dehydration, excessive vigorous exercise and needless muscle building.
Every gout sufferer taking allopurinol (or other uric acid lowering treatment) has a different amount of uric acid pooled in crystals, a different rate of crystal dissolution, a different rate of excreting dissolved uric acid, a different immune reaction to partially dissolved crystals, and a different pain tolerance. Some suffer with gout flares at the start of allopurinol treatment. Others don't.
Gout flares from allopurinol are a risk, not a necessity. There is a much higher risk of a gout flare if you do nothing to lower uric acid. There are serious health issues related to long term untreated gout, so doing nothing is a very unsafe option.
There are alternatives to allopurinol, including non-drug options, especially where the underlying cause of high uric acid is treatable. However allopurinol is most effective in almost all cases (though the new febuxostat is of similar effectiveness). It is safe in most cases, but the small risk of severe reaction should be eliminated by starting with a small dose. Any treatment is only valid if current uric acid level is known, then monitored frequently to adjust the uric acid lowering therapy so that levels are managed properly.
Though your dad's gout seems to be well under control with the allopurinol, it will do nothing for infections. I seem to remember that steroids can makeinfections worse, but I could be wrong on this.
You need to seek medical advise on an antibiotic program that is suitable for use at the same time as allopurinol. It is vital that your dad follows the antibiotic program exactly – i.e. the proper dose for the correct number of days.
Sorry metamorph.
I truly appreciate the kind thoughts behind your message, but I had to remove the last few words as it breaches the terms of one of the services I use.
If anyone is curious, I can only explain privately.
I'll also put more on this subject in the tech stuff forum soon.
Perhaps we'd better keep this thread for good and bad adverts that we see, as it is the gout cures forum.
sodiumred said:
I recently got really intense pains in both of my knees burning all the way down to my ankles. The pain would not stop. … My knees dont look swollen and are not red, and it doesnt hurt to touch it. … Does it sound like I have gout?
Any thoughts are appreciated.
It is certainly NOT gout, or any other joint disease like pseudo-gout.
As your pain is being controlled, best advice is to wait until you have a better diagnosis from a specialist.
vegetarianGuy said:
Will blood banks take my Gouty + Allop polluted blood?
I thought I would ask before getting the process rolling.
There is no obvious reson why your blood would not be accepted. Allopurinol is not included in any list of 'banned' medications that I have seen. Guidelines vary a little between countries, so it is wise to check locally.
Anyone donating blood should always notify any medications, and stop donating if they have any infections, or are part way through a course of antibiotics.
ouch said:
… So is it a case of Allopurinol requires you to drink more water or is it just medication in general that you should consume more water to counter balance the chemical you add to your body? Or will extra water alone counter act some of the claims those pharma fellows make about allopurinol.
Many medicines, including allopurinol, are excreted in urine via the kidneys. Some people drink very little water, and the resulting low urine flow rate can lead to stones forming.
It's not a case of the medicines requiring more water. It is the case that these medicines make adequate fluid intake more important.
Gouties should already be drinking adequate water …
[pause for a sip]
… so they should not need to change habits when taking allopurinol.
I've just realized I didn't address Nate's specific point about allopurinol.
Adequate hydration is vital for allopurinol takers because it's active metabolite, oxypurinol, is excreted via the kidneys. Urine that is insufficient, or too acidic, can cause oxypurinol stones to form. This should not be a problem if the guidelines I've mentioned, and Utubelie has clarified, are followed.
However the issue with excess fluid intake and allopurinol is unclear. I've seen reference to uricosuric drugs increasing the excretion rate of oxypurinol, but nothing about excess fluid. Perhaps there is a value in taking the 24 hour urine test when you are on allopurinol – not necessarily to measure uric acid excretion, but to measure oxypurinol excretion in an effort to assess it's net loss (if any).
Yes, cjeezy, “about 3 liters” per day is about right, but there are some other aspects.
GoutPal AsideThere is a new diet fad among celebrities called the baby food diet. How fitting that it's being tried by Reese Witherspoon.
First, we need to speak of fluid intake really. All drinks are primarily water. Some people think the water content of food is relevant, but I doubt it unless you are on a strange diet.
I can find little in the way of official guidelines on fluid intake recommendations, so good resources would be appreciated.
So far I've learned that producing more than 2.5 liters urine per day is considered excessive. As gouties need to be at the top end of the scale, and accounting for other factors in fluid balance, 3 liters per day intake seems about right.
Second, though “per day” is a common guideline scale, “per hour” is more useful as a management scale. Accounting for sleep, sensible fluid intake lies in the 150 – 200 ml/hour range. But even this is not the whole story, as we may need to increase it to replace fluid lost from hot weather, sauna, or exercise. This is very dependent on individual circumstances. The International Marathon Medical Directors Association recommend 400 to 800 ml per hour during elite marathon running.
Finally, we need to consider the effects of excess fluid intake. The benefits to gout sufferers are decreasing the risk of kidney stones and avoiding higher concentrations of uric acid in the blood/joints. The risks are kidney damage from having to process excess water (and, for vigorous exercisers/sweaters, death through low sodium). It is not clear to me how and why kidney damage can occur, so again, if anyone has any properly researched resources, I'd appreciate the link (or email if it's copyright).
metamorph said:
I have been moving around to other websites lately and have come to the realisation that “advertisements” are a very important source of income for websites. Most of them think of all kinds of ways to attract membership. I suppose the more members they have, or if more people logged-in the more they will receive from the advertisements.
I am not sure how it works – especially here at GoutPal. I am not being nosey, but just to understand better and see if we could contribute as a member of GP.
I will understand if this is something that cannot be discussed openly.
Sorry for the delay in replying – I'm getting a little swamped with the number of posts on this forum. A good thing, I hope, but it does concern me that I don't always get time to answer everything.
Membership and advertising are two very different things, though may be related. E.g. some sites advertize products to their members by email. On the other side of the coin, some sites charge for membership in order to avoid the need to generate income through advertising. I do neither of those, but I do include adverts..
Many of the adverts are geographically targeted, so I cannot see all that is shown, though I am happy that the controls by the advertising service keeps them legal, even if they are disagreeable to some. Censorship is not something I feel comfortable with. However, I can block unsavory websites if I have the details.
If anyone spots an advert for something that is misleading or in some other way inappropriate, then please send me a message. I need the page that the advert goes to when you click on it.
Sorry Nate, but you've ended up with a 24 carat medically-incompetent tosser (please feel free to tell him I said so).
The 24 hour pee test is a great diagnostic tool in early gout management. This is where the doctor assesses the patient's condition prior to planning the treatment options for the urate deposit removal phase and the maintenance phase. It allows the physician to assess your kidneys urate excretion rate. This determines if you are an underexcretor or overproducer of uric acid. Underexcretors can often be treated with uricosuric drugs such as probenecid, whereas allopurinol works for both. This test is probably just as useful for those who want to try to manage uric acid without drugs, as it gives you a clearer picture of the best way to tackle the problem.
If you are taking allopurinol, the test is totally, 100%, absolutely pointless. Allopurinol will reduce your uric acid excretion rate because there is simply less uric acid to excrete. The test reults will be totally, 100%, absolutely worthless.
The reason you still have gout attacks when taking allopurinol, or any other uric acid drug is well understood by those who understand gout, and falls into the realms of mystical magic for those who don't (or at least it confuses the dumb bastards). By the way, that smugness is directed to your idiot doctor – I can quite understand how laymen would not realize that uric acid lowering can temporarily cause a gout attack. I cannot understand, forgive, or tolerate a member of the medical profession who shows the same lack of awareness. The words Professional Negligence spring to mind.
Hang in there Nate. It can take several months on allopurinol to clear old uric acid crystal deposits. You are doing all the right things, but maybe a further increase in allopurinol (maximum is 900mg) will lower uric acid below your current 5.8, and speed the urate reducing phase. Probenecid MIGHT help, but this will be hit and miss as you can only assess your uric excretion rates if you stop taking the allopurinol for 2 or 3 weeks.
Please feel free to use any of this on your fasciNAT(E)ing blog
I think your doctor is treating you as a statistic! What you need is a good plan for managing your gout, not a doctor's ignorance.
It helps to know what is causing your gout, but sometimes it is just impossible as there are so many factors. If you are genetically programmed for gout, diet has little to do with it. In your case, there could be some scope as your BMI is 27.5 (92 kg is just short of 203 lbs). According to the studies on my gout diet page (much overdue for a makeover, but still relevant), you are about twice as likely to suffer gout as if you weighed between 155 and 169 pounds (approx 70 to 77 kg). Though medically recommended, this type of weight loss is not always socially acceptable. Also, this is just a statistical observation, so you will not know for sure if it reduces your uric acid low enough until you try it.
Of course, calorie control (combined with exercise) is only one aspect of diet. Nutritional balance is also vital. This is a massive subject, but the key points are:
- Good variety to ensure all recommended nutrients are included, but not excessively. Nutrient shortages or excesses can cause increased uric acid production.
- Restrict animal purines (more on this soon – purines are definitely not made equal, so even my excellent purine table needs rewriting)
- Restrict iron intake. Exposure to other toxins like lead can also raise uric acid, but iron is quite hard to avoid as it is added to so many foodstuffs.
- Liberal intake of milk proteins, vitamin C, and coffee, all of which have been shown to reduce uric acid.
Having said all that, I have serious doubts that dietary measures will get you from the very high (540 is not slightly higher than 350!) uric acid level to safety. Certainly you should consider immediate urate lowering therapy to reverse the crystal invasion. This will stop further joint damage, then you can see if dietary improvements will work for you without the continuing danger from uric acid deposits.
The length of time to dissolve uric acid deposits varies enormously, but the longer you leave it, the harder it gets as tissue envelops clumps of crystals, isolating them from the blood stream. It also depends on how low you get your blood uric acid with allopurinol or similar. The lower the better, so aim for 200 µmol/L.
After around 6 months with no gout flares, you can relax the dosage to maintain your level around 350, but you cannot just stop and start it becausa as soon as you get to 400, the deposits start again, and you are back where you started.
