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zip2playParticipant
nealjking said:
zip2play,
Your consideration, “Is it arthritis or is it a gout tophus?”, confuses me: I thought gout was considered a form of arthritis. So, if it was arthritis but NOT a gout tophus, what else would that white lump/stuff be?
I guess I should have more precisely ?said “IS it an?OSTEOarthritis node ot a gout tophus?”
Or the pain might be from “RHEUMATOID arthritis or gout,” another differential doctors have trouble making.
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So basically, “gout or the OTHER arthritises.”
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In fact, I am not 100%?certain whether my finger nodules are the toplhi of gout or the Heberden's nodes of OE…or a combination of the two.
zip2playParticipantWow what a claim. Imagine a pill you can stop without fatal results.
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What's next? Febuxostat is a round pill that will not lodge in your pyloris causing a slow death like? those other deadly SQUARE pills?
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When you make silly claims it's a dead giveaway you don't have anything substantial to claim.
zip2playParticipanta blood test and 200 colchine tabs.
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Oh you lucky dog, In the States 200 colchicine would set you back $1100 thanks to the criminal patent system.
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I bet you, 99 out of a hundred doctors don't have the foggiest idea.
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Yep,
A mole of Lithium is 7 grams and a mole of Uranium is a half pound. That's nuts.
Ask?an average?chemist for a mole of molybdenum and I guarantee he cannot weigh it out without consulting a chart. Ask for a mole of HAFNIUM and? NONE of them could get it for you.
AND, for us gouties, a mole of xanthine oxidase weighs in at over a quarter ton.
Making weight of a substance depend on what it is is straight out of Alice in Wonderland.
zip2playParticipantGod, I HATE that conversion. So .22/59.5 x 1000 =?3.7 right?
If so, then:
1. No, that's a terrific level. Yes, you can eat ANYTHING you want except maybe daily sweetbreads washed down with porter.
2. That would be down to 3.0 mg/dL and would be fine but unnecessary unless you have a lot of tophi to try to dissolve.
3. You could try 200 mg allopurinol and see if you can remain pain free with urates of under 5.0 mg./dL (your molar .30?value) but since you are so recent with pain, probably holding these very low values for at least 6 months before fiddling your dosing is a good idea.
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I hope I did those conversions right. (I hated molar units in high school, I hated them in college and I hate them today.)
zip2playParticipantHans,
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I think it has to do with the lowered solubility in our extremities. I guess there's no way to find out the REAL temperature in the distal joints of my fingers, but it is certainly below 98.6 degrees, perhaps FAR below?
So? maybe??there's no solace in solubility of urate of 6.7 at an artificial generalized “body temperature.”
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On the other hand perhaps the SWINGS in uric acid are dramatic over a day. I am going to do an experiment when I see my doctor again in January (when my new insurance kicks in.) Since I always have my cholesterol checked, I am ALWAYS fasted when my blood is drawn. Next time I will pig out at lunch and have a blood draw in the afternoon. That will be my first full stomach urate reading ever. Perhaps it will be dramatically higher than usual?
But I DO need my cholesterol checked…a dilemma.
I'll work something out.
zip2playParticipantThanks guys, I appreciate your input.
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I re-looked at my?lab results?and this week's number was actually 5.3 rather than 5.7. So if I round it it comes to 5 rather than 6 (insert belly laugh here! )
I guess I should be content.
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Hans,
While no acute attacks, I DO tend to be forming small tophi on my fingers, my feet ache after a long walk, and I have a SOMETHING (probably a Morton's neuroma but possible a tophis) in the middle of the right ball of my foot which feel llike a BB when i walk in harder shoes. And of course, I have a back from Hell. So I have some MAYBE issues. (And of course I DO get twingy when I overdo my Black and Tan?next month!)
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Perhaps if I can add another 100 mg. allopurinol without getting charged DOUBLE I might do it. I don't know how pharmacies bill for 400 mg. as opposed to 300??? I'll go talk to my pharmacist.
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(Current drug problem problem: insurance issues switched me from branded Lipitor (atorvastatin)?after 10 years to generic?simvastatin. For the first time in 10 years I have gotten ROTTEN blood results but Lipitor costs over $100 a month.?I'll work something out.)+
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I guess my ultimate concern should be preventing a heart attack more than preventoing sore feet, eh what?
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In a nutshell, we need a good safety margin to be sure that new crystals do not form. 5mg/dL (0.30mmol/L) gives us that safety level. My gold standard is 5, and I strongly recommend that all gout sufferers adopt this.
I agree 100%?I'd LOVE the safety margin afforded by <5.0, especially if urate is atherogenic.
zip2playParticipantnealjking said:
zip2play,
Why didn't you get it punctured before it migrated below the nail?
Because of the old uncertainty: Is it arthritis or is it a gout tophus?
When it started moving downwards, I became convinced it was the latter. Microscopc examination confirmed it was a mass of urate?a gazillion dendritic crystals.zip2playParticipantI have had the tophi pop up overnight on my hands, just amazing, not there Tuesday and?voila, there Wednesday. ?They? seem to be outside the joint and almost painless.
The largest?one on my thumb sat for a year before moving OUT…ever so slowly down and under the nail, raising the nail by about a quarter inch. I popped it with a red hot paper clip through the nai (yep, they melt) and out oozed the toothpastey stuff for a week…CURED!
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I would imagine that with time, layer after layer would accrete onto the original giving it that? 'bunch of grapes” appearance of chronic untreated gout. May we never find out.
zip2playParticipantBhart,
What is your tariff for 30 of the 80 mg.?
zip2playParticipantI was prescribed lipinsol and started eating less meat
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Do you mean lisinopril, the ACE inhibitor? Ah, yes, I see your final paragraph.
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I celebrated with a ribeye and 3 black and tans.
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Gosh, if I had to pick?my single worst foor pain trigger it would be YUENGLING'S BLACK AND TAN (or is black and tan a generic.) Were you referring to the YUENGLING's. If so, try their annual BOCK BEER for a really crippling treat :D:D and their PORTER even worse.
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Can I presume you are taking 300 mg. allopurinol. Once I started 15 years ago, I never had another acute attack. Yes, you need to take it every day of your life unless they invent something as good and cheaper.
Nah, don't sue the lisinopril people it's a good antihypertensive if you are a renin type hypertensive, but NEVER take a thiazide diuretic?they are deadly for gouties. The ACE inhibitors don;t work well for me…alll they do is cause an endless itchy cough, MONTH after MONTH.
If your allopurinol is effective you can kiss any dietary restriction goodbye (except maybe for the dark beers.) That's the beauty of allopurinol therapy.
As an aside, I never get any twinges from a regualr beer, PBR my current cheapy favorite, but often I drink a 6-pack/day? MHL, Coors regular, Heinekin, Labatt, etc. I hate light beers?like off tasting cold?water.
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So yes: ALLOPURINOL FOREVER.
zip2playParticipantI never had a problem with allopurinol?started with a 400 mg. dose.
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If I were in your shoes, I would take a 300 mg. dose for a day or two, or three?which is most likely where you would wind up, and see what it does. If the uncomfortable feelings and the brain fog come back with the drug, I would consider a different anti-gout drug.
I doubt that you will “desensitize” if it truly is a drug reaction.
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Watch out for hives, swollen lips or eyelids, thickening tongue?signs of a DANGEROUS reaction. Get to a doctor immediately.
Don't be hypervigilant though?you don't want to discontinue the cheaperst, most effective anti-gout med on a whim.?Usually if we ask ourselves “Do I feel strange” the answer is a YES. You must admit, it is a very vague symtom.
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?Your other realistic choices are probenecid (cheap) and Uloric (preposterously expensive.)
zip2playParticipantRemember two parts of a syllogism:
HFCS is made from corn and is a competitor with cane sugar for $$$$
The? cane sugar industry is VERY rich.
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Thus the cane sugar money will excoriate the HFCS money and?so “YES, it can be definitively shown that fructose causes all diseases, all wars, pestilence and evil”?except in Oregon and Washington?where apples CURE all diseases and also in Florida and California where CITRUS cures all disease.
It is best not to get involved in these food fads driven solely by BIG AGRIGULTURE, which can buy and sell “researchers” and cherry pick information with complete abandon.
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Fructose, High fructose corn syrup, glucose, sucrose…let them gas on but know well these?foods??are of very little consequence in gout.
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P.S. I remember a diet fad 30 years ago where FRUCTOSE was guaranteed to be the ONLY way to lose weight…the ONLY sugar it was safe to consume. It really is all so silly.
zip2playParticipantMy “partially baked idea”:
Psoriasis and Exzema are both autoimmune. Perhaps gout, being a VICIOUS?stimulation?of the immune system to attack urate precipitation might result in overactivity of the immune system in general, resulting in a proclivity to all kinds of auto-immune diseases (like most of the arthritises.)
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My immune system overreacts HORRIBLY to fungus attacks, insect bites, what have you. I have never before thought of this possible connection to my gout. Hmmm.
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I am concerned that people say that diet will not effect the gout.
Let me amplify: I have no doubt that diet can CAUSE gout but once a person has had a single gout attack he can no longer tolerate any instance of a serum uric acid that is supersaturated like normal people can. Once crystals have formed there will ALWAYS remain a focal point for more crystallization.
Thus, while?diet can CAUSE an initial attack of gout becasue the serum urate got prepoesterously high, there isn't much capability to control the established gout with diet. Once you have had a confirmed certain gout attack, it is time to? start medication. It will not go away and diets won't prevent another attack…and another.
zip2playParticipantctrlkeys said:
quick update guys, 5 day on 300mg allopurinol and yes last night at 5am i was awoken with the usual pain of gout, left foot 2nd joint, it wasnt extreme with meds managed to fall back asleep, still today its tingling on and off, like it wants to break out into a full on attack but taming it with 1000mg of naproxen and praying thats enough to keep it at bay, colchcine at hand if it really goes mental on me.?
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just thought id give you all an update, took me to day 5 of being totally clear to get what i would call a minor flare right now, will see how it goes by the morning??
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🙁 *sigh*
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It sounds like you have matters well in hand. Soon you will be singing the praises of allopurinol and be free of gout attacks.
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Personally, I think gout has a built in clock that can TELL that it's exactly 5 AM. I wonder if it's smart enough to adjust for daylight savings time?
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I cannot weigh in on the effectiveness of naproxyn becasue when I had attacks, it was still a VERY pricey patented super-dooper arthritis medication. Colchicine in high doses for me will stop even the worst attacks.
zip2playParticipantSore after walking a while regardless of the time of year. I don't know if it's bad shoes, bad feet, gout, old age or overweight…or even ennui? Probably all contribute.
Walking in flops is always comfortable so I am going to go primarily with bad shoes as the major culprit.
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If I ever got rich I'd find a shoemaker in Milan or? Florence?to make me a couple pair that actually look like my FEET. A friend with really bad feet had a pair made to fit in Brooklyn…ugly looking cop-type black oxfords. They cost him $600 for 1 pair. OWWWWW!
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I have traced my feet on a piece of paper and no shoe that I have ever worn looks even VAGUELY like the drawing. Well maybe one with a big front toe box that was popular in Sweden ?for about 20 minutes 2 decades ago.
zip2playParticipantspartanu,
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Get a new doctor. When doctors start blaming us it is usually ?a sign they need some treatment of their own…probably psychiatric.
zip2playParticipantBeware of BAFE syndrome. Blame Allopurinol For Everything
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Oh I just LOVE that acronym. It should go right up there with the even more common SCAMP syndrome?Statins Cause All Muscle Pain .
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Those who suffer these syndromes spend their short drug-free lives with incessant joint?pain?relieved only by ?a massive and fatal heart attack.
zip2playParticipant“first treatment in a series of 3.”
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Problem with peg-uricase treatment seems to be the need for continuing the treatment. It seems odd that much in the way of results can be achieved with only three treatments. These tophi are well covered by the immune system and it seems to be it would take LONG and CONTINUING treatments to have much of an effect.
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Let us know how he makes out with the 3 treatment sessions.
zip2playParticipantThese drugs are available worldwide but one can only go by word of mouthh (or finger.) Some companies are reputable, and some are not so it's a crapshoot.
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It is not legal for U.S. citizens to buy this way but sometimes NEEDS MUST. I do not judge.
But for illegality who can be more illegal than the FDA and this slimy little greedy company that stole the colchicne “patent?”
zip2playParticipanttony,
How much allopurinol are you taking? How long have you taken it?
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Don't take this the wrong way, but it sounds a bit like the guy who kept hurting himself by jumping from an airplane: He gave up salami and bought a parachute and attributes the lack of salami for saving his life.
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(There is no chemical way the body can make uric acid from fructose…there is a Double ring xanthine structure that cannot be created or destroyed by the human body.)
zip2playParticipanteric ryan said:
My pain is a lot better, but hardly pain free. Still have the morning stiffness and there is ALWAYS a certain amount of pain. The only time I honestly feel completely pain free is at night when I take a few pain meds and have my feet up and massage one of my creams on my feet. If I just sit there, sometimes its bliss. My friends don?t understand why I am so anxious to get home sometimes, but that?s why.
I think we can all relate to that.
zip2playParticipantThat's a lot of food for thought Art.
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Firstly…what a terrific SUA response to 600 mg. I might try the same if my new doctor to be?isn't too much of a pain in the ass to manipulate.
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Secondly…what a conundrim trying to differentiate the damage done by gout from the damage done by OA. Is it possible that the former causes the latter? Who knows? Perhaps it's the same disease process and only the names have been muddled.
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Often I see rreferences to OA as a default diagnosis…if it's not RA then the pain must be OA.
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Sorry about Portia (a natural name for her.)
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Michigan in Winter is a big suck.
zip2playParticipantHi veg,
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First thought: those end joints are the first affected by osteoarthritis?the badly named “wear and tear” arthritis. Hard work will bring?pain in this condition and naproxyn works well for pain.
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?But I have a slightly sore, if I think about it,?distal joint on my little finger that had two small nodules. They could be tophus from arthritis or a Heberden's node of OA. If I weren't a gouty I'd never never given them much thought
The same finger has become a “trigger finger” the last month caused by an obstruction of the tendon in one of those purple carpal joints. An inside invisible?tophus or OA? Hard to know.
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A test might be to check the response to 6 or 8 colchicine?gout should respond much better than OA.
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But for me, I will just wait watchfully at the little finger but have that carpall joint shot up with cortisone?a trigger finger is a bitch becasue it springs open and a handful of vitamins and medicaments goes flying around the bathroom, some inevitably into the toilet. A decade ago a cortisone shot? into exactly the same place freed the trigger?but JESUS was that a painful shot.
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Nice hand picture?I may steal it.
zip2playParticipantUrea is VERY different from uric acid ?despite the similar names.
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So then it's possible the Stage 5 might have been an overkilll call and you are hanging at Stage 4 (or 3)…that would be good.
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So your 2 orders of business then are getting a?uric acid reading…I'm AMAZED they haven't done any to date… and getting the nephrologist okay on allopurinol.
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Thanks zip ? I realise I can't cure it by diet
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It's worse than that; you cannot even CONTROL it with diet. Diet was for a time a half century ago when there was nothing that could be done for gout except pain mitigation.
zip2playParticipantctrl,
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I see no downside of starting on 300 mg. allopurinol. Just keep a watch out for the?VERY VERY?rare hypersensitivity reactions like rash, swollen lips and eyes, things you would watch out for with any new drug (or even food.)
zip2playParticipantNot many of us are fond of dietary control for gout. It just doesn't work (as witness your two attacks a year.)
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Your case is very special and all recommendations MUST be run by an excelllent nephrologist.
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A couple thoughts: Uric acid is hard on the kidneys so a regimen to lower uric acid seems beneficial for both your end-stage kidneys and your gouty joints. What levels of serum uric acid do you run? Have you or your doctors ever given thought to long term uric acid management with drugs, proablably allopurinol.)
I don't think allopurinol is contra-indicated, in fact it may be quite? desirable.
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As an aside, before the developlent of urate lowering drugs, gout was a slow death sentence and the ususal route was by kidney destruction.
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Are you planning long term dialysis or kidney replacement? A dear friend is on her 25th year with a cadaver kidney but the downside has been a life of cyclosporine that is starting to rear its ugly head. They suspect it is the cause of her? macular degeneration with encroaching blindness. Talk about damned if you do and damned if you don't.
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And of course whatever route you choose will turn EVERYTHING on it's head, becasue your whole liquid excretion system will be changed. You'll need a whole new set of recommendations.
zip2playParticipantI think 2 AM -4 AM is common but 5 AM the most common (I read that somewhere.)
I think the reason is twofold…cold feet and inactivity. Large crystals precipitate most readily in an absolutely still solution, so the less motion, the easier crystal formation.
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If I were in your shoes, ctrl, I would start taking the allopurinol now. Downside is it would get hairy in 3 months when you go back with very low numbers…you'd have to admit your sins and ask fordoctoral absolution and put up with several “tsk tsk”s with your head bowed in submission.
There is a limit to how long you need to let some doctor fiddle fart when he cannot make a proper diagnosis.
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But the call is yours.
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Indomethacin (INDOCIN) makes me dizzy.
zip2playParticipantI am going to drop a colchicine bomb:
In my well reasoned personal opinion, I have found and firmly believe that diarrhea and pain relief go hand in hand with colchicine.
I don't know why, I cannot imagine the relationship,?and could only guess but it seems to work that way.
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I wonder if anyone has ever analyzed the liquid portion of colchicine induced diarrhea for the presence of uric acid? I'll bet not. Wouldn't that make the sloppiest science fair project ever?
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If somebody paid me I'd do the study
You'd all have to mail me quart jugs full of slop. If anything I'll bet it would discourage postal agents rifling through my mail.
zip2playParticipantEric,
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I wouldn;t worry about a 10 day course of antibiotics.
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With the 300 mg. allopurinol and the 2 colchicine a day, how is your pain control? Symptom free?
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but also kind of scary that i am dictating my treatment.
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Tell me about it: I've been doing it for decades and now, thanks to an insurance change I need a NEW staff of doctors to “train.” I am so dreading this.
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I once spoke to a professor of medicine?who said the key to a long happpy life is to find the one doctor in 100 who knows what he is doing?I'm still looking.
As scary as it is to take complete control of our own health the upside is that at least then the person in control GIVES A SCHYTTE.
zip2playParticipantctrl,
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I hate to do this to you but I pretty much agree with your doctor in saying ?that tophi are more or less?forever (much like James Bond's diamonds.) I have heard that there were some results using allopurinol and probenecid taking urates down below 3 and seeing some tophi reduction.
The GOOD part is that when they are effectively sealed off they cannot cause attacks?only the occasional subtle ache (my case anyway.)
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I have 2 very small tophi (small rice grain size)? on the last joint of my little finger.?My?first one?was solidly on the joint and then I did a LOT of beer for a month…another formed almost overnight?and moved the first one aside up? towards my hand. A big one from long ago on my distal thumb joint (that one hirt a bit) slowly moved down under my thubnail and halfway out I perforated the mound with a red hot paper clip through the nail. Out came a slippery liquid that dried to microscopic dendritic crystals that oozed for a week and no more tophus.
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It seems to me there is only one way to get these buggers out.
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