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Keith (Gout Admin) said:
Even with a bang on the head, I can't find a way to misunderstand my notes about ways to share your photographs or other information about uric acid and gout
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Sorry, Keith. As the the saying goes: “The baby knows what he's talking about, the reason the adults don't understand him is because they just haven't learned his languish (language), yet. You, Keith, being the computer baby, you know what you are talking about, me, being the old computer fart, I haven't learned YOUR languish/language, yet.
?I had signed up and had gotten a Drop Box account, but didn't know what to do with it so got rid of it after it clogged my screen for some time.
I miss the good, ole days when I just “copy” and “paste” a phrase, page, or picture from one file/page to another.We used to be able to do that over a year ago on your forum, till one day we could no longer and never since.
dcdude said:
Sorry, I had my units wrong. It's not Ph, it's PRAL (Potential Renal Acid Load).
Los Angeles has become the world. We've got everything and every type of person here now. It's kind of hard to find the “fruits, nuts and flakes” that LA was famous for. I only know one surfers…
Thanks, Chuck, for setting us “straight”. I hope you didn't mind my somewhat warped sense of German humor.
Tell me about the “fruits and nuts” in LA. I used to live there in one of my former lives before we invaded Viet Nam. You peaked my curiosity: What is that “I only know one surfers…” all about?Trying to copy charts of SUA readings. Keith had left some instructions but I haven't been able to decipher them, yet.
dcdude said:
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Cheddar cheese is one of the lowest on the purine list (6) but it's higher than many meats when it comes to Ph (18.98)?!?
I don't know on what planet you are living or where you are coming from ( I do know, Los Angeles is out of this world.) But here on Earth the highest pH number you will ever get or find is: 14
azasadny said:
I believe Colcrys is Colchicine. I tried it last month and I took 2 the 1st hour, then one every hour after that to a total of 11 pills with no positive effect on my gout pain. The next two days were horrible and I had severe diarrhea and nausea. I WILL NOT take Colchicine again?
Art, if you don't mind me saying so: I think you have dealt with Colchicine=Colcrys (parma's new extortion gimmick) the wrong=”uneducated” way (NO CRITICISM.)
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Colchicine does NOT work on your pain directly, but indirectly by dealing with your attack/inflammation, the cause of your pain. The degree of your attack/inflammation greatly depending on the amount of MSU build-up in/on your joints.
In my case, 2 Colchicine pills/day for anywhere 4-14 days took care of me. And when/if the pain level exceeded 5-8? (on a scale of 0-10), I had to take additionally 2-500mg Naproxen pills/day, for, generally, 2-3 days.
11-16 Colchicine pills/day will cause nausea AND diarrhea. Consult with Zip on this issue. He is the authority on that subject. If you can endure 11-16 pills/day, you, probably, may get rid of the attack/inflammation in 3-4 instead of 14 days.?
I hope, I somewhat clarified, not confused, the issue of COLCHICINE and DIARRHEA.?
azasadny said:
…so I'm not the “common” gout sufferer, I guess. I take Aleve 220mg OTC for pain, as needed. …
?? My brother and I have both tried Colchicine, but the side effects were horrible and it didn't provide any relief. …
Chuck, there is one issue which Azasadny did not clarify: Aleve=Naproxen is strictly for combating pain. It does NOT due anything to get at the cause of the pain which is the inflammation caused by high uric acid in your system. Colchicine (which they cannot tolerate) is the most frequently used medication to reduce and/or eliminate the inflammation. I, e.g., only need two pills /day for 4-7 days and my inflammations are gone. However, there are gouties who have taken as many as 16 pills/day to fight severe inflammation. That many, generally, causes nausea, diarrhea and a few other side effects, but it works.
azasadny said:
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??Thanks again for hearing me out and sharing your experience. I wish you good health!!
Thank you, Art. I ?do understand your frustration, particularly in view of the fact that you have done just about everything possible to “manage/control” your gout. You probably are at the mercy of your own metabolism and there is not much more left to change/coerce that to cooperate. Maybe, hopefully, the rheumatologist has some thoughts which no body else has considered.
Good Luck, that's all I can say, and it sure as hell isn't much.
azasadny said:
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If you sense that I'm a bit upset, disappointed and confused, it's because I truly am. I'm doing everything I possibly can, but the gout will not let go of me. My family Dr thinks the gout may be related to my liver condition because she has never had a patient with gout respond like I have…
Thanks for letting me rant…
Art, your story is almost entirely the opposite of mine. I am quoting one other comment of yours from another post: “Let's keep learning from each other and trying to offer assistance where we can.” I am trying not to be judgemental or critical of your comment, rather raising a caution flag: While we can and do learn from others' experiences we should NOT offer assistance (tell what to do or not to do), simply what works for one gouty may not, most often, will NOT work for the other. That's why I am posting my story here which is, as I said, 180 degrees from yours.
I was on Uloric 40mg from July thru Dec. 2010 and now on Uloric 80mg from Dec. 2010 till present. B/4 Uloric, my SUA was around 8-9mg/dl. During 40mg U. it dropped to 5.8-~7. during 80mg it dropped to 5.2 and raised again to 6.9 (above the critical line!) I had a couple of mild attacks/twinges on 40, and just one (about 3 weeks ago) on 80mg. Reason: I walked ~2 miles (too much after very little walking for almost a year.) 2 Colchicines for 4 days took care of the inflammation (left knee) with pain level of 1-3 (on a scale of 0-10) Never had to call on the emergency doc: Naproxen. ( That's only for levels 5/6-10)
To point out the differences: I take Uloric because I CAN'T take Allopurinol, you can. I CAN tolerate Colchicine, you can't. My SUA is around 7, yours is 4.3. Both, my liver and kidneys are completely normal, your liver is not. (What about YOUR kidneys?) Your diet is about as healthy as it can be, mine leaves something to be desired: I eat red meat, pork, chicken, fish, spinach, mushrooms.cauliflower, (all those “good” vegies which are no good (supposedly) for gouties), drink 1-2 glasses of wine 3-5 times a week (no beer,though) YOU have quite a few gout attacks, I rarely do. (Have had gout for 27 years.) I am sure, you are getting the drift. You have NOT elaborated on one important item: KIDNEYS. In my opinion, kidneys play a far more important role than liver in dealing and getting rid of uric acid and/or MSU (the tophi). My hunch is that MY high SUA readings are responsible for tophi being redissolved and getting into my blood stream. Fortunately, my kidneys are doing their job in getting rid of it. Have you and your doc considered that your kidneys may not be 100% functioning? Just a thought!!!
Keith (Gout Admin) said:
… I am in hospital with a broken back. … Keith
Which devil has been riding YOUR back? I hope not the “Gout Devil”. You do know why he is riding you? You haven't sold him your soul, yet. You are giving his underling, the gout devil, too much static.
momoy4 said:
…yes I've read a couple of posts in the forum referrring to exercise as a gout trigger. …
My question is that the attacks (pain) now comes in waves-…one day it's my knee, the next my foot or my hand.
…
Exercise is only ONE trigger. There are others, too. Since we do not have access to our metabolism's command center, we do not know where the devil ?'Gout” is going to strike next. So don't make life easier for him by exercising, even lightly. Most long-time gouties go through that “Where is the next strike” phase.
Health 4 me said:
… ?Do you still think seeing a rheumatologist would help?
Without trying to answer for Keith, I, a gouty for more than 27 years, would suggest that you and your husband consider the following facts: Neither gout nor pseudo-gout is a life-threatening condition. They are lifestyle-threatening conditions. Kidney problems, however, can turn into a life-threatening condition. While a rheumatologist is considered a specialist dealing/knowing more about arthritic problems (gout and pseudo-gout falling into that classification), a nephrologist is the specialist to deal/know about kidneys and associated problems.
A guess on my part is that a nephrologist may know more about arthritic problems than a rheumatologist knows about kidney problems.
momoy4 said:
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This is getting scary ?
It should!
You only talk about your eats, not your acts. If you'd read all the comments on this forum, you'd know that physical activities, especially when you have flare-ups, twinges, or full fledged attacks, you DON'T undertake physical exercises since they increase uric acid levels:The cause of GOUT!
Keith (Gout Admin) said:
Though MRI comes nowhere near DECT for diagnostic purposes, it will show uric acid crystal deposits. Unlike DECT, it is hard to determine what the deposits are with MRI, and it is almost impossible to detect if they have eaten into bone (unless there is clear bone erosion, but even normal X-ray will show that).
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However, they can be used to show that urate lowering treatment is working. So, you can take a baseline MRI scan, take a few months allopurinol or febuxostat or other gout medications to lower uric acid, then repeat the MRI to assess improvement. It is absolutely vital during the treatment to have monthly checks to ensure uric acid stays below 6mg/dL.
Keith, per your own blog:??
?MRI
MRI, though not cheap, is more widely available. It will detect bone erosion earlier then x-ray, and it will detect deposits, though not what they are. The 2009 study concludes that MRI might be most useful in assessing joint problems associated with gout, whilst the later report notes that it is the only technique to show bone marrow swelling [edema].?
What good is a tremendously expensive MRI when it does NOT tell you what deposits you are dealing with??? Besides, if you ever had an MRI you'll know how far away you want to stay from it, if you can help it.
forya said:
..
Maybe I can talk the MRI center into doing my foot too
? i doubt it.
Forget that. NO x-ray and NO MRI is going to show any MSU deposits. At this time, only what is known as DECT=Dual-Energy Computed Tomography? (a kind of a dual x-ray machine) is capable of that. And, unfortunately, I think, only ONE ?machine is here in the States and one in Canada.
BobLurner said:
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Finally if anyone reading this decides to try it themselves be aware that in my case it took about 4-6 months of regular vitamin C at 1500mg daily I reckon to finally do the trick. I also took it very religiously and I rarely missed a dose (I found some nice fruit flavored tablets that I liked to chew)….
I have been taken (very religiously) every day since June 15, 2010 (that's almost 10 months) Vitamin C, 1500mg, and I have yet to see my gout being under full control and be “now completely gout free for over a year and half (>18 months)”. It hasn't happened yet, but then, of course, I haven't had yet the additional 12 months of more vitamin C to prove my/your point.?
Maybe we'll talk about the gout-free life with vitamin C in another 25 years from now and see where we stand.?
Now, there is a huge difference between you and me: You got your first gout attack when you were 53 and, lucky you, you found that vitamin C did the trick for you. ?Unlucky me, I went for more than 26 years with attacks on and off and trying all sorts of things except taking control of the guy and wringing his neck, with and without meds, with and without diets, with and without beer and wine, and certainly without vitamin C, because nobody knew THEN what it would/could do. In the meantime Mother Nature had Her fun “coating” my joints with beautiful MSU crystals which are still decorating my finger and toe joints today, even after some surgery.
Well, as I said, we'll talk about it again when you are 80 and I am going to sail around the world approaching 105.?
therockfrog said:
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I'm making an appointment with my rheumatologist and will get my numbers re checked by them…and ask them abou the back pain issues.
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Thanks
That's the way to go.
Have you read about the side effects of Uloric, as published by Takeda? Nausea, shortness of breath and some bodily pains are cited, but not back pains
therockfrog said:
?I tried Allupurinol twice in 4 years and had such bad allopurinol side effects, I just put up with my Uric Acid level of 12.5 and hoped my diet would help but never did.
So, I started 40 mcgs. of Uloric 5 weeks ago.? My level is down to 4.5 (yay!) but I have a few side effects which are quite annoying. ?
?? I dont want to keep bothering the doc if my numbers look good but no way can I deal with this long term.
Any other people with back pain once you stated taking Uloric or Allupurinol????
I was on Uloric 40mg for 5 months and now on 80mg, ~4 months. NO BACK PAIN! (I am also allergic to Allopurinol.) However, the fact that I don't have back pain or somebody else has, that does not mean that YOU have to have back pain. Since YOUR body is telling you that you have back pain, YOU should/must bother your doc to find out what is going on.
?Regarding your numbers, I'd be very weary about them. Levels of 12.5 going down to 4.5 in 5 ?weeks on 40mg sounds suspicious to me. My levels on 40mg did not drop below 6 after 5 months, and I checked them once a week. If your levels were around 12.5 for any extended time, I would never trust ONE test result, regardless who performed the test.
Since you are a gouty for over 25 years, how often did you have your SUA checked? (Not that it really matters NOW.) What matters now, is a sound confirmation what your SUA level REALLY is!
Keith (Gout Admin) said:
That's excellent advice, Hans, and I'll make sure it is given more prominence in future.
How frequent is best for liver and kidney function tests, after the initial test before urate lowering therapy? Once a year as part of annual check-up, or more frequent?
My personal feeling: At least once a year and/or every time one starts any of the gout treating meds, like Allopurinol, Uloris, or Probenecid, with a follow-up w/i 3 months to assure that none of the meds have a negative affect on either liver and/or kidneys.
However, liver/kidney problems may also arise from other than gout. It's up to the treating physician to monitor and deal with such problems.
Keith (Gout Admin) said:
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Your third question is bordering on crossing the line of what is correct on an online amateur forum. How on earth can you expect other people to take responsibility for the state of your kidneys!!
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Keith, please, let me add one other important aspect to your, as usual, excellent comments and advice to us gouties: Just as it is of utmost importance to have regular SUA checks in order to control/manage gout, it is just as important to have regular COMPREHENSIVE METABOLIC PANEL tests performed in order to keep check on our liver and kidney functions, especially, when one is on either, Allopurinol, Uloric or Probenecid. The metabolic tests are one of the few reliable tests which will show if something is going wrong before a full-fledged liver or kidney decease is developing. (This was one of the first tests my rheumatologist ordered, even before I went on Uloric. I had been on Probenecid for 5 months prior to Uloric.)
zip2play said:
hansinnm said:
Now, Patrick, don't you play “gouty god”. It's enough having one playing “God Gout”.
Not?”everyone says on this site, it's the only reliable cure“. I, for one, am allergic to Allopurinol, therefore it is NOT the only cure, as far as I am concerned.
I ask you to be careful to make blanket statements on this forum. The majority of people on this forum need sincere, proven statements. They get plenty of bullshit from the so-called “professional medical industry”.
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You know, hansinnm,
Sometimes it get REALLY tedious making allowances for crabassy old farts, even if they are carrying around pounds of tophi in their feet from years of mismanagement of gout.
?Save your smart-ass shit for those around you who find your demeanor “interesting” although I am sure they are few and far between.
kimwarren21 said:
?
By this time I had developed tophi all up my calf and was still in horrrible pain and unable to walk. So he told me to take indomethicin for 2 weeks and all would be fine. On my next app. I went in and he took one look at my leg and told me to get to the hospital asap! 4 more weeks in the hospital and a radical operation later for the tophi and I am back at home. Learning to walk again but it is very slow. Considering they were talking about me losing my leg and possibly never walking normally again I must say I'll take it.? ?
Good luck to everyone out there with this bizzare disease.
Kim (if that is your name), I doubt very much that you had “tophi all up my calf “. Tophi, generally, develop ONLY on/in joints on the bones, and you got mp-teens of those in your body. And there are no joints on your calves, until you get to your knees.
?I think you got a good case for strangling your doctor or sue the living daylight out of him/her for putting you in the hospital and through that radical operation. I don't believe for one minute that those a-holes removed tophi from your calf.
And gout is NOT a bizarre decease. There is nothing bizarre about it. It's one of the oldest deceases and well documented and one of the least successful treated one, except by the gouties who have taken their lives in their own hands rather than leaving it in the hands of pharma controlled and paid pill pushers of the medical industry. (You and your insurance company just paid for a down payment on a nice sailboat for one of those pill pushers.)
I hope, “God Gout” has something to add to this.
patrick said:
For what it's worth, my experience getting on Allopurinol went fine.? I did get a couple of little flares the first month, but with colchicine they were manageable. ?
I'm one of the very unlucky people who has a sensitivity to Allopurinol and am currently going off it.? Life has been good on it, and I am hopeful I can find a cure for high UA level that works for me.? As everyone says on this site, it's the only reliable cure.
Now, Patrick, don't you play “gouty god”. It's enough having one playing “God Gout”.
?Not?”everyone says on this site, it's the only reliable cure“. I, for one, am allergic to Allopurinol, therefore it is NOT the only cure, as far as I am concerned.
I ask you to be careful to make blanket statements on this forum. The majority of people on this forum need sincere, proven statements. They get plenty of bullshit from the so-called “professional medical industry”.
parceiro said:
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1) Her directions to me are:
Start colchicine 0.6 twice daily right away (go down to one if it causes too much diarrhea)
Start allopurinol 300mg once daily two weeks after my current symtoms are gone
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2) I've heard that it is generally better to start AlloP at 100mg to test for side effect first, yes?? Should I talk to her about it or just cut my pills in half and start with 150?…
1) You got pretty good advise from your doc.
2) Forget about all that BS and don't be a guinea pig. Mother Nature will tell you right away if you are allergic to Allo. Just don't let any new attacks throw you off. Stay with Allo.
Make damn sure that you have your SUA checked and keep it under 5 or better.
zip2play said:
…zip2play said:
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NSAIDS generally suck for a gout attack. But for the colossul fu#k up at the FDA in awarding a patent for colchine and pricing it out of the stratosphere I would say get 30 colchicine from your doctor and take about 16 of them?but it will cost you $150 now (instead of $4 last year.)
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Sorry to butt in: You still can buy Colchicine in Canada and India for less than $50/30 pills. I posted the URL sometime ago.
bkd: If you can afford it, stay of the foot and use crutches to move around.
Aleve will only work on your pain, but not on your inflammation which causes your pain. Cochicine is your inflammation fighter.
Andrew said:
… under control and found out that another 30 tablet supply would be refilled with ColCrys at an out-of-pocket cost of $150 USD for 30 tabs (previously covered by insurance for a $5 copay, the claim was denied because ColCrys is not generic)….
Have you considered buying Colchicine in Canada?
GoutyGal said:
Hans,
?
How long has Uloric been around; and what are the performance reviews?? Both my nephrologist and rheumatologist are suggesting I try it.? I am on daily colchicine and allopurinol; but my SUA level doesn't go below 6.8.?
Kidney issues are?the significant factor in any treatment for me.? The effect of any medication on?my damaged?kidneys has to be the primary concern.
GoutyGal, Uloric has been sold for public use since (I think) February 2009. Performance reviews, in my book, are questionable, at best. Reason: Depending who performed them , for what reason, they are done to support whatever the interested party wants. (Sell, money, avoid law suits , you name it.) The only thing I look at is what true, honest gouties report. HOWEVER, ?and that is a big HOWEVER, all these reports from gouties are ALL individual cases and it would be dangerous to deduct that what works/ed for one will work for someone else. I know, I am not much help here, however, it would be irresponsible on my part if I'd recommend anything, particularly since you have serious kidney problems. I do suggest that you google Uloric and read all that is published on the medication.
?By the way, why are you taking Colchicine daily? Are you suffering from any inflammations? That's really where it helps gouties. It does not work on pain (directly) nor does it affect your SUA, as far as I am aware.
I would think that your nephrologist would be the most qualified person to advise you regarding Uloric and your kidney problems.
GoutyGal, it is YOUR responsiblity to decide what medication and how to take. As I have said in other comments: No doctor, no pharmacist, NOBODY, is going to SUFFER the consequencies of meds YOU are taking, only YOU.
zip2play said:
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Hans,
Do you think your immense tophi deposits make it difficult to lower your serum urate no matter what you try? It seems?possible that the outpouring of irate into the bloodstream might easily counteract your best effeorts at getting a low SUA.
Does that sound plausible?
Zip, that has been my thoughts, too. However, since I can only check the UA in my blood stream and don't have any means of checking how much UA leaves my body every day, there is NO way of knowing for sure. One thing I am sure of is that I still have plenty of tophi. Only need to look at my big toes and some of my fingers.
HOWEVER, as I said before, I haven't had any real attacks for almost 6 months and I am taking any relief Mother Nature is giving me without questioning Her. And when I say Mother Nature, you know what I mean: Millions, billions believe in the existance of a GOD who NOBODY has ever seen (except as a figment of imagination). I believe in MOTHER NATURE=NATURE which every living being on this planet can perceive every instant of its existence.
Ravenwood said:
#2).? If the latter, I'm just trying to be certain I can produce an intelligent explanation for why my 6.8 should not be considered 'normal', even though the lab is saying that it is.
Quite simple: 6.8 is the border/critical line. If you look at all the GP forum comments, you'd come up with hundreds of documented, actual gout-inflicted people, from all over the world, who'll confirm that with a 6.8 level they were experiencing attacks of several degrees intensities. Any doctor, really experienced in/with gout will agree.
