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I'm just going to post up what I wrote for my blog this morning. I neither have the energy or gumption to come up with something original right now. I just wish this was all over or at least not so damn painful anymore. Tired of it.
My left knee was bugging me pretty bad by Saturday evening. Enough, in fact, that I think the pain had surpassed the 'bugging' level and had moved forward to the 'oh shit this really, really hurts to bend my knee or try to move' level. I was once again relegated to the couch, a friend's couch this time, and unable to partake in any of the birthday festivities that we had traveled north for. Upon awaking Sunday morning, I knew I was in trouble when I could barely put pants or socks on. These are not fun times when this happens. The rest of Sunday was filled with curse words leaving my mouth as my knee would collapse while shuffling to the bathroom or kitchen or couch, causing horrible, knife-like pain throughout the joint. By this point, I was finding it very hard to find any position that I would consider comfortable. This morning, I awoke with my knee even more swollen and the pain being even a little worse than yesterday. Oh, how I love Mondays.
However, I must reiterate a post from a couple of days ago – this attack in my knee is different than every other attack I've ever had in that joint. Yes, there is swelling now, but there is no redness and the knee is not sensitive to touch. All of the pain is internal and the back of leg behind my knee cap is extremely sore. The outside of my knee also very, very painful while I feel no pain on the inside of it. It feels more like an acute injury than gout, but I know that's not what is going on. However, my right knee is also hurting and this is from a former acute injury. The way I am forced to walk right now is putting odd pressures on my right knee and it too is hurting a lot. I guess my upper body wanted in on the fun too as my right elbow is somewhat sore and feeling gouty.
After seven months of 600mg/day of Allopurinol, is this supposed to be happening? I can think of nothing else to do to avoid these attacks. My little bit of walking wouldn't affect my elbow and almost never causes an attack in my knee. I've mainly seen a correlation with exercise and my ankles/achilles/toes hurting but never joints farther up my body. Is my body still cleansing itself? Do I still have huge deposits of Uric Acid in my joints being released by the Allopurinol and causing these attacks? Do I have some other undetected underlying problem that is causing all of this? What in the hell gives?
It will be interesting to see my UA levels on Wednesday morning. I'm sure they are still well below 6mg/dl, yet I'm still getting bad attacks every two to three weeks. All I can think right now, though, is just how much fun work will be this week. The driving, the walking up two huge flights of stairs, sitting in my chair for 9 straight hours, having to walk to the end of the hall to use the restroom, living with the stares from all the people visiting my floor as I hobble down the hall. God, I'm so sick of this. I might as well start eating large quantities of meat and drinking copious amounts of beer as nothing seems to be helping anyway. I really wish I could just take a few months off of work to let my body properly heal. That will never, ever happen though. Well, unless I revoke my American citizenship and become a German or some other EU citizen.
Well, off to work. This should be fun. Oh, and I'm supposed to take a driving test with a stick shift today. Hahahaha! I don't think that's going to happen but I'm sure going to get a lot of shit for not doing it. Maybe I'll get fired and then I can at least collect 100 dollars of unemployment each week while I try to heal my body………….
Hang in there. I guess no words from me will make the pain bearable.
After seven months of 600mg/day of Allopurinol, is this supposed to be happening?
Probably yes with the amount of build up you must have. I am actually thinking about the same question. 3+ months on it and attacks definitely have got weaker and I feel I just had my last AlloP induced 5th attack (time will tell) but I have constant discolaration in my toe area and slight inflamation with accompanying constant low level pain.
Nothing compared to your pain though. Still I think it will take time. Personally in my case I think I will start panicking after 12months.
Two quotes –
……it takes a few weeks or months for it to start working. Also, allopurinol can initially cause gout attacks.
….Also make sure your doctor has given you medications to prevent attacks during the first 6-12 months of treatment.
I guess I just wasn't expecting the attacks to still be this bad. I can take a lot of pain, but this is slowly approaching unbearable proportions. I've still got today and tomorrow to get through before I see the doc, too. It's going to be a tough 44 hours!
Another bummer is that I will probably have to cancel my trip to France this weekend. My wife and I were going to take it easy at a spa in Chamonix, something I could really use, but I think the drive (7 hours) is going to be too much for me. Another trip thwarted by gout. I just never get a chance to relax and I'm sick of it. So, so sick of it.
thanks VegGuy
Nate. My absolute heart felt saddened condolences for you! Empathy and sympathy. Been there done that and Goutpal has a T-shirt waiting. I often wonder why God has cursed us with this malady but then I am reminded that I have feet. Short shrift when you are in the middle of the meat grinder but words are so hollow at a time like this! Again my deepest grief for your pain! I have allowed myself to take a bit of your pain and suffering as my toe is now killing me, so hopefully a little telepathic tansference has lessened yours? Prayers also heading your way!
Nate- Commiserations… I've just been through something similar with a knee that simulated a torn cartilege of 20 years past, which was operated on by keyhole surgery then.
However this time the knee cap externally was very tender -which differentiated it.
I'm still not sure what went on this time- but that insect bite seems to have triggered an alternative mode of reaction to normal gout and hasn't lasted as long. [3- 4 days]
I have traditional niggles in old toe sites that are just 'warning me', otherwise.
What I see is that one size doesn't necessarily fit all, both with presenting and managing gout.
One thing, too- is that now I have retired and can rest, my body has a fighting chance to roll off gout type issues & recover. This is a big factor in gout as a whole.
A poster a while back picked up on this- I can't remember his name. In Aus. I think!
Get some serious rest, keep life simple and bear in mind you are under assault . Meds, however helpful and necessary, will demand more of your body too.
You need a mental strategy to cordon off stares, pressures and expectations from yourself and others ! I would guess family finances can't take a major break from work duties.
A current mention of Reiters Syndrome [inc. triggers by infection] caught my eye – No reason why this and Gout can't co-exist, but the info is apparently hard to come by [GP].
Thanks Trev and ME. I did end up coming home from work early. I was looking at my knee in the office and my manager saw it and told me to go home and rest. Really nice of her, but it would be better if I could just take a few days off. I just don't have the sick leave or time off.
I usually don't let the stares and comments bug me, but I do sometimes wish I had a cattle prod or hammer to respond with. It's the dumb jokes that get really old. I have told people to 'f… off' before and then limped away. They usually come back and apologize. Those people are the least of my worries, though.
I'll get through this as I've gotten through all the other attacks. I just wish I knew when or even if there was some end in sight. Although the super, super bad attacks have become less frequent and the attacks overall have become less severe, these last two attacks I've had in the span of three weeks have been bad. Seven months of Allo and super clean living and then this. Ughhhh…..
Here are a couple of pictures of my knee. Most of the swelling is above my left knee which is weird. It makes walking extremely difficult right now. I have no support when I take a step with that leg and it feels like my knee isn't even there because it's not working properly. Tons of pain in the back and on the outside of my leg, though.
Buddy you are a mess and your face isn't even in the picture.
I hope you can take a little friendly ribbing? Most people think you are a lush when you mention gout. If doctors (practicing physicians) haven't a clue neither does the Cher Horowitz society at large. I tell my friends to soak their foot in gasoline, light on fire then start stabbing said lit foot with an ice pick!Nate a simple Google search for Reiters Syndrome or reactive arthritis will help either to bebunk or demystify any overlapping symptoms?
And by and by nice pins bro, Arnold would be proud
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.
Thanks for that, GP. Hopefully, this is the last hurrah for me as far as severe attacks are concerned. Hey, even if it takes three years, it will be worth it. But, since I don't have severe tophaceous gout, I'm hoping the process won't be that strung out. Things always seem most dire during a bad attack and, of course, that's where I am right now.
ME – no worries on the ribbing. From other's in pain, I have no problem with it 🙂 Yep, a lot of misunderstanding concerning gout in the general populace. The image of the King with his hamhock in one hand and flaggon of beer in the other still prevails amongst non-gout sufferers.
I may post some more pictures later. The swelling is worse and my mobility is severly limited. I've made a nice nest, with the help of my wife, on the couch. When the orthopedic clinic opens, I'll be calling them to see if I can't get my knee aspirated. That should help somewhat.
New Pictures from this morning. I'm about ready to call my doctor. Offices should be open soon. I really hope there is something they can do – like make a housecall! I just got up to go pee and it was not fun. I just don't see how I could drive let alone make it out to the car. Ughhh.
Nate- I was in your position (to some degree) last week. I still have a swollen knee area and a picture still rather like yours one week later- but now I'm mobile and free of major pain.
I could then, barely drive an automatic car to the surgery. No way could I manage a clutch pedal.
2 days later I was in the hills. One day after that -struggling to walk again with kneecap pain.
The thing that helped was rest and time to let swelling go down. The fluid retention is protection to some degree and it may start to travel as mine did. Will aspiration really help in this?
I'm posting another thread on water in the body after an interesting radio item made me review my thinking on extra water intake greater than a litre+ per day.
I hope you get some sense from the medics- but nature does quite a good job – given a fair chance!
Deleted: Duplicate post [not sure how that happened]
Heck- now there's wasted space I'll give the comparison just for company.. this, one week later after initial pain in joint to the L. knee side- finally ended in the kneecap. This is strange compared to any other 'gouty' episode for me.
Never, either been above the ankle- except for general joint soreness etc.
I finally got through to the doctor. He's putting a prescription in for prednisone and percocet for me and my wife will be picking it up in a couple of hours. Thank goodness he's doing this for me. I don't have time to let this naturally heal which usually would take anywhere from two to four weeks. I need to be back at work, if not tomorrow, at least by Thursday. I just hope the prednisone can do the trick.
It still does seem to be getting worse as the day wears on, too. Each time I get off the couch it is harder to 'walk'. Just the smallest movements are killing me. I was hoping to do a bit of work today at my computer, creating some new posters and pieces from some photos I've recently taken, but there is no way I can sit there with my leg in an uncomfortable position. Absolutely no way.
For those that question the percocet for pain, it does help and helps immensely. Last night I woke up screaming in pain after moving my leg in my sleep. It is that bad.
trev – I'll check out your water post in a bit. This is a topic I'm highly interested in!
Yep Nate!-
I appreciate you can't take weeks off, but from intense pain I had similar I was back walking strangely quickly. I was shouting out so loud at night [10 days back] I thought I'd disturb the neighbours too! [Apparently not, though-I checked later]
In only 2 days it had reduced – so much, I couldn't really figure it.
The only thing I took apart from painkillers was the Erythromycin antibiotic. That seemed to help co- incidentally, though overdoing the getting back stirred up more pain in knee that still lingers now.
My feeling that it was 'gout like' only still lingers and an infectious agent can't be ruled out to my thinking- for my situation. I only highlight this as there seems to be similarities in our episodes.
I hope painkillers do the job for you.
trev, I have no idea how many times my knees have gone through bad attacks, but it has been a lot. Each and every time, if left untreated, it can take up to a month or more for it to get back to anywhere near normal. I remember a few where I could barely get around for well over a week because of the pain and swelling. I'm pretty positive that this latest attack I'm having will follow that same course if left untreated. Yes, the pain is in a different place and the swelling seems to be more in my upper leg and upper knee, but there really is no doubt that this is another straight-up gout attack.
I'll have the meds here soon. Just keep your fingers crossed for me that they work!
Thanks Nate! Sprechen sie Deutsche? Ich sprechen nur etwas Deutsche. Oh yes sir get that knee drained ! That fluid is/will cause nerve pain along with the gout. I will say a super duper thank you to your long suffering wife! She is golden in my book. Well nest up bro and pics of the eggs please LOL! Let us know whats on the tube nothing here! God Bless Nate!
Hi Nate,
I’m really sorry to hear what you’re going through 🙁 You may have mentioned this already so I apologize if I missed it, but are you taking Colchicine now? and are you taking 2 Colchicine’s daily as a preventative measure (when you’re not having attacks)? If not I would recommend talking to your Dr about getting a RX. That stuff works GREAT!
cjeezy said:
Hi Nate,
… but are you taking Colchicine now? and are you taking 2 Colchicine’s daily as a preventative measure (when you’re not having attacks)? If not I would recommend talking to your Dr about getting a RX. That stuff works GREAT!
Nate, this is just a confirmation of cjeezy's remark: For me (and that is strictly for ME) two Colchicines and two Naproxens (Aleve will do) a day have done the trick for the last 25 years, up to this very day, when I had an attack or a swollen knee with excruciating pain. I generally stop the Naproxen as soon as the pain has stopped or is tolerable (in most cases after two days), however, I do continue the Colchicines for at least one or two more weeks.
Nate I was reading your blog and please correct me if I read wrong but do you have only one kidney? If yes then could that be making things lot worse with regards to processing the uric acid? I understand that you are testing your kidney regularly and it is working normal but I wonder if it's working overtime, 600mg AlloP must be taxing for your body too.
Did your Gout start when you went down to 1 kidney?
ME, ich spreche sehr schlecht Deutsch
GoutPal said:
… but I've finished (for now) my review of the length of time for uric acid crystals to dissolve….
Thank you GP; most interesting.
However, I have some difficulty accepting the figures. How can any one set up a time schedule for dissolving of UA/MSU without knowing how much of that “schtuff” is in a person's body?
e.g. Let's say one person has 1,000 mg (I don't have the foggiest idea how much a person really has) and another one has 10,000 mg of UA/MSU in his/her blood and tophi combined, and the first one has a UA level of 5.2 mg/dl and the second one 8.5mg/dl, how can one predict how long it will take to lower the level where it is acceptable and no more tophi are present?
I am sure that the 18 guinea pigs did not have the same SUA level and the same length of time over which the SUA/MSU accumulated, nor the same “other” body “misgivings”, like high blood pressure, or diabetes, or arthritis, or liver/kidney irregularities, or whatever else is bugging us.
Besides, wouldn't the UA level be different for a person with little or no tophi and only SUA in the body vs. one who has egg-size amounts of tophi located at strategic points?
While I recognize that a low UA level will help reducing the existing amount of uric acid, I can’t help thinking that it will take a hell lot longer to get rid of tophi vs. serum uric acid in your blood.
I am looking at four different uric acid crystal configurations: 1) SUA/MSU in dissolved form in the blood; 2) uric acid crystals in some whitish “liquid” (referred to as: “schtuff”) right under my skin (not yet solidified to a tophus); 3) solid uric acid crystals in form of tophi, throughout my body, and 4) a solid blob of UA/MSU right on top of my toes and/or fingers.
I can't see, for life of me, how one can throw all that in one pot and come up with a good tasting dish to swallow.
hansinnm said:
vegetarianGuy said:
…ME, ich spreche sehr schlecht Deutsch
VG, you got an excellent translator.
Yes my wife
Seriously though I speak basic German. I wrote that myself but was not sure about spelling so used Google translate as wife was not nearby I pulled up a couple numbers from some obscure studies:
Normal total body urate for a male is 1200 mg. urate.
To get a tophus that number is increased 50 – 200 fold.
So that's 50- 240 GRAMS of urate. So we are talking about OUNCES here.
When we realize we can pass only about 750 mg per day, it is not hard to see how long it can take to play catch up. Even if allopurinol were to stop production COMPLETELY which is impossible, at 750mg./day excretion, to get rid of 75 GRAMS would take what, 100 days?
That's why for tophaceous gout,, the best results are achieved by coupling the allopurinol with a uricosuric to vastly increase that 750 mg. figure.
Sorry nate…I had hoped that 600 mg. allopurinol would have you out of the woods by now.
hansinnm said:
GoutPal said:
… but I've finished (for now) my review of the length of time for uric acid crystals to dissolve….
Thank you GP; most interesting.
However, I have some difficulty accepting the figures. How can any one set up a time schedule for dissolving of UA/MSU without knowing how much of that “schtuff” is in a person's body?
e.g. Let's say one person has 1,000 mg (I don't have the foggiest idea how much a person really has) and another one has 10,000 mg of UA/MSU in his/her blood and tophi combined, and the first one has a UA level of 5.2 mg/dl and the second one 8.5mg/dl, how can one predict how long it will take to lower the level where it is acceptable and no more tophi are present?
I am sure that the 18 guinea pigs did not have the same SUA level and the same length of time over which the SUA/MSU accumulated, nor the same “other” body “misgivings”, like high blood pressure, or diabetes, or arthritis, or liver/kidney irregularities, or whatever else is bugging us.
Besides, wouldn't the UA level be different for a person with little or no tophi and only SUA in the body vs. one who has egg-size amounts of tophi located at strategic points?
While I recognize that a low UA level will help reducing the existing amount of uric acid, I can’t help thinking that it will take a hell lot longer to get rid of tophi vs. serum uric acid in your blood.
I am looking at four different uric acid crystal configurations: 1) SUA/MSU in dissolved form in the blood; 2) uric acid crystals in some whitish “liquid” (referred to as: “schtuff”) right under my skin (not yet solidified to a tophus); 3) solid uric acid crystals in form of tophi, throughout my body, and 4) a solid blob of UA/MSU right on top of my toes and/or fingers.
I can't see, for life of me, how one can throw all that in one pot and come up with a good tasting dish to swallow.
Great observations, Hans. Thanks too to zip2play for observations on the urate pool – any definitive references?
I agree totally that the solution to how long the risk of gout flares lasts depends on the amount of schtuff (urate pool) and the rate at which we lower it. Unfortunately, precise answers are well nigh impossible, because both of these are difficult to measure. So what CAN we do?
In practical terms, the articles I refer to show that urate clearance improves with lower blood uric acid levels, and that it takes longer if you have suffered gout longer. Therefore getting the lowest achievable uric acid level (especially as zip2play suggests with combined XO inhibitor and uricosuric), and starting urate lowering therapy as soon as possible is the best way forward for anyone diagnosed with gout.
Psychologically, I sense Nate is at a loss to wonder why flares are still occuring despite his best efforts. These studies show that, statistically at least, he should be prepared for a few more months. Having said which, vegetarianGuy answered this much more eloquently in the first response
.Thanks too to zip2play for observations on the urate pool – any definitive references?
Reference for the 50-200 times normal for tophus formation:
http://www.gwu.edu/~med08/worksheets/GOUT.doc
(from George Washington University but today access is forbidden…but I pulled this out:)
Chronic gout – who to treat?
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- Patients with kidney stones (they don’t want to go through that again)
- Patients with tophus (total body pool = 50-200x normal to get a tophus – need long-term therapy)
- Patients with many attacks per year (3-4), or particularly severe attacks (need long-term therapy)
- Patient with hyperuricemia and urine urea of 1,000 (very high) – treat even if they have few attacks/stones/tophi
- Give allopurinol if overproduction of urate is the problem
- Give benemid (probenecid) if underexcreting urate (increases excretion by one-third; old drug with few adverse effects)
-
DON’T treat asymptomatic hyperuricemia!
- even in the hospital, only 10% of these patients have gout
- allopurinol has risks, too (like Steven-Johnson Syndrome) – don’t use unnecessarily
Here's a link for the normal male urate pool of 1200 mg.
uptodate.com/patients/content/topic.do?topicKey=~dMMMfuqn3jS4p0
That figure was EASY…it's all over the web.
I remember reading in an ancient PRINCIPLES OF INTERNAL MEDICINE that the average person with gout has 40 grams of urate in his body. But like I said this was an OLD text, as I recall the 1950's, so maybe with more people on the meds now, that figure might be on the high side.
But I think that by the time we see a gouty change in any joint that we have LOTS of urate tucked away. I cinsider myself lucky that I recognized gout early and began treatment before I saw any tophi. Perhaps that explains why I never had any attacks after starting allopurinol.
GoutPal said:
.. Great observations, Hans.
Thanks too to zip2play for observations on the urate pool …
vegetarianGuy [who] answered this much more eloquently in the first response
…[and there is poor] Nate, psychologically, at a loss to wonder why flares are still occuring…
Here we are, some of the most “informed” (at least more than most of the “medical profession”) and yet still almost as much staggering in the dark as before.
hansinnm said:
GoutPal said:
.. Great observations, Hans.
Thanks too to zip2play for observations on the urate pool ?
vegetarianGuy [who] answered this much more eloquently in the first response
?[and there is poor] Nate, psychologically, at a loss to wonder why flares are still occuring?
Here we are, some of the most ?informed? (at least more than most of the ?medical profession?) and yet stil almost as much staggering in the dark as before.
We may never be 100% accurate with everything we say on this board/site, we’re all still learning and posting to the best of our knowledge. The nice thing with this site is that GP WILL make adjustments to posts to try to keep accurate info posted. It’s like in business, its all about the end goal. We may stagger along the way to get to that goal, but as long as we learn and eventually reach the goal the process is a success…in this case the goal is education as it relates to gout. We’ll get there my friend
Doing a bit better today, at least pain-wise. Swelling is still there, however, making the knee pretty unstable. I'm pretty damn worn out today, though. At least the prednisone and percocet is helping, much faster than any other treatment I could undergo. I stayed home again today, using the very last of any time off I have. Oh joy. But, I just couldn't make it in, and I tried.
To answer a few question – I do only have one kidney. I was born that way. I was told it is larger than the average kidney and does the job of two just fine. I'll just have to remember I have only one in case someone asks me to donate in the future
I'm sure this does have something to do with my gout, though. Doctors don't think so, but I haven't dealt with the best batch of medical professionals over the past 15 years…….No colchicine for me. My body does not tolerate it well at all. But, if I ever have a weak off and I'm sticking near home, I may give it another go. The problem is, that is not going to happen any time soon. I can not take that stuff at work though. No way. Even small doses get me bad.
Thanks for all of the information in this thread. Good reading and I appreciate it!
Auf Wiederlesen
Glad to hear you’re doing better Nate! Just curious, what side effects do you get from Colchicine and do you experience them from one dose or many? The only side effetc I’ve ever heard of was the runs :)…Based off my first attack, I’d rather be running (or hobbling) to the crapper than dealing with days of pain!
hansinnm said:
Post edited 2:50 pm – May 26, 2010 by hansinnm
GoutPal said:
.. Great observations, Hans.
Thanks too to zip2play for observations on the urate pool …
vegetarianGuy [who] answered this much more eloquently in the first response
…[and there is poor] Nate, psychologically, at a loss to wonder why flares are still occuring…
Here we are, some of the most “informed” (at least more than most of the “medical profession”) and yet still almost as much staggering in the dark as before.
I'm certainly not staggering in the dark, though often struggling to find ways to explain why I will not switch the light on.
For anyone who seriously wants an accurate assessment of how long it takes for complete urate clearance, arrange constant urine analysis and regular DECT scans using Siemens SOMATOM Definition scanner and syngo DE Gout software. I'd happily work as a consultant for 10% of cost
.For the rest of us, “lowest uric acid, as soon as possible” is clearly best practice. If pushed for an answer on how long to clear urate deposits, I'd answer “reckon on 4 to 6 weeks for every year you have had gout, if you maintain uric acid in the 4 to 5 range.”
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