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I realized this morning that I just started posting
here with no introduction or greeting.? I
did not intend for my sudden appearance to come off as rude ? I apologize if it
did.? Please allow me to make amends.?
My name is Ashley, I am a 44 year old male in
Colorado, USA.? I am very active.? I think I have been having gout attacks for
about 10 years ? although I cannot be sure when they started.? The more I have learned about our shared
condition, the more memories have surfaced such as, ?Hey, that one time I woke
up and could not walk when we were ? that must have been a mild flare.? And the
like.?
I started having serious attacks about 6-7 years
ago.? I connected the dots and sought
treatment about 4 years ago.? I was
originally diagnosed as calcium pyrophosphate dihydrate deposition disease (pseudo
gout).? The reasons for the misdiagnosis
were several, but they included photographs taken during arthroscopic surgery which
showed deposits which appeared to be CPPDD deposits.? I was never able to get a lab diagnosis for a
variety of reasons I can bore you with later.?
The upshot of this is that I then spent 2-3 years treating my ?pseudo?
pseudo-gout with colchicine and diclofenac ? which worked to control flares ?
but obviously were really working to control gout flares.? The downside, that I am now aware of, is that
during this whole time I have been silently growing crystals as my underlying
condition goes untreated.?
My worst and most debilitating flares were in my
right knee the summer post surgery (summer of 09).? They were unreal.? I have also had them in my left knee,
metatarsal joints, and ankles.? Many were
post trama (I am quite active) but some came on for no apparent reason and always
befuddled my doctors.?
Fast forward to January 9, 2012.? I have a new flare in my foot.? 5th metatarsal joint.? I can?t walk, my foot is swollen, hot, and
red, and I have a fever.? As I ponder my
condition, I re-read several gout diagnoses and ask myself the question, ?Did
we really rule out gout??.? I realize my
symptoms are identical to gout, and that I still don?t have a lab confirmed
CPPDD diagnosis.? I ask my rheumatologist
if we have ruled it out.? He explains
that we have a lot of circumstantial evidence for pseudo-gout, but that he
cannot find evidence of a UA test or other evidence of us ruling gout out.? In all fairness to him, he was handed the diagnosis
by another doctor I worked with, and was skeptical the whole time ? but the treatment
appeared to be working.? With his
recommendation, we ordered a UA test.? I
returned a value of 8.1 mg/dl.? The gout diagnosis is still not lab confirmed because I have not let a flare get large
enough to aspirate fluid, but I match symptoms perfectly and have high UA.?
My Rheumatologist advised starting Allopurinol immediately.? I wanted to take a slightly different path, here
is why.? I like to drink beer, I exercise
lots, and I sweat profusely.? I am often
quite dehydrated.? I am aware from
reading here that I am unlikely to make much of a change in UA numbers with
diet alone, and that the statistical average of reduction via diet/lifestyle changes
was about 1.0.? Nonetheless, I am also
aware that statistics have outliers ? I wanted to take the unlikely chance that
I was an outlier capable of a larger reduction.?
Therefore, I have embarked upon the (likely to fail) mission of seeing
what I can do in 30 days.??
I stopped all alcohol intake, obviously including
beer. ?I have been working hard at remaining hydrated. ?I have not made many dietary
changes, but my diet was pretty good for gout anyway.? I have lost a couple of pounds due to no
beer, but I am 6? 175lbs and quite fit anyway ? so not much room there.??
On day 21 I went back to the lab for an interim UA data
point.? I want to have more than just the
end point to have some more confidence in the value, and to see if a trend is emerging.? My 21 day number was 7.0 ? right in line with
the statistical average reduction.? Day 30 will be
on Friday Feb 10, 2012.?
I do not expect much of a change over the next 8
days.? I do expect to start Allopurinol
on that day.? My Rheumatologist has
already provided me with Allopurinol, and I have colchicine and diclofenac
ready.? If my number is not dramatically
lower, I will start on the 10th.? I am
looking forward to a beer that night 🙂?
I have also ordered a UA test kit from the link
this site provides.? I will begin daily
tests as soon as it arrives.? My plan is
to plot the data along with diet, alcohol, Allopurinol, and other relevant data
? much as many of you have.? This will be
my own little trial with a sample of one, and should return useful data for me.?
An aside on my user name, ?Believe In Science?.? I recognized later that it could be
misconstrued to mean that I consider myself a scientist. ?I did not mean it that way.? What it means to me is a testament to the
scientific method, rational thinking, testing, and to sites like this which cut
through the misconceptions and instead pursue a scientific approach to finding
solutions.? Believe In Science.Ashley, do yourself a favor: When you get your kit, don't test your SUA every day. Reason: You'll waste your money, and worse, you'll cause yourself lots of confusion. (I am speaking from experience. Have self-tested since Dec. 2009.)
Here is my advice, yours to take or leave:
Take 2 or 3 tests immediately to establish confidence with the kit and proper amount of blood drop. Set a fixed date/time when to do the test: Monday, Saturday, Sunday AM (preferably before any intake of food) which ever day is most convenient for you. Establish finger and point where to prick it; (I myself prick my left middle finger about 3/8-1/2 inch from tip.) Even though they recommend not to squeeze the blood out, you may nevertheless be forced to do so in order to get the desired amount. (I found about 1/8″ or a tiny bit less to give me fairly reliable results. However it should be near 1/8″.) Of course, you'll keep record and you might make a note what and how much you drank the night before. As far as food is concerned, that is your choice. (I found it to be cumbersome. tedious, not reliable, nor revealing/essential. But that is me. You use your own judgement.)
Why confusing? If you test every day, you'll find that readings will jump all over the place, depending what you have eaten, drunk; what and how much exercises you have done; how much or little sleep you got; how much other medication you have taken; under how much or little stress you are (your metabolism and its functions are very much influenced by that;) and there be may other factors I haven't thought about. In any case, it's very doubtful that you or anyone, for that matter, will be able to pinpoint the reasons for up or down of the SUA value. E.g. While starting Allopurinol/Uloric medication, the SUA generally goes first up because deposited UA in form of MSU (the salt of the acid, called tophi) is being dissolved and put back into the blood stream.
I think you are on the right track: Monitoring/managing your SUA. Unless you know where that is there is no telling what's happening. One more thing: Have regular lab tests (6 or 12 months) confirm your home tests and have metabolic tests done at the same time to monitor liver and kidney functions. Some medications can affect those organs negatively.
Good luck.
BIS,
?
Aren't you lucky that you didn't get an SUA of 5 or 6 after your trial of saintly eating. That would mean you could avoid allopurinol but NEVER have another beer again.
?Oh gosh, and all that 12-step nonsense!
I'm not sayin that thought never crossed my mind.
?That was a mental bridge I was only going to cross if I came to it.?
testing out the smilies, lots of options…
Well, I have been on Allopurinol for just over two weeks. ?I have also done frequent home testing. ?Here is what I think I know:
?
My home test kit is accurate and consistent. ?I have confirmed my home results within 0.2mg/dl of the lab results. ?I have also found what works for me as far as consistency. ?At first, I was trying all different sized drops of blood, as has been discussed on another thread here. ?Then I discovered what I would call a saturation drop – if you have a big drop of blood on your finger, the test strip will only pick up so much of it. ?And this amount is consistently the same size. ?Using this saturation sized drop, my results are all very tightly grouped and follow predictable patterns.
?
With respect to results, I have slowly reduced from 7.x down to the low 6.x over the first two weeks. ?Both my doctor and I are pleased, but he has agreed to up the dose to 200mg daily for the next two weeks. ?If I am not where we want me (likely under 5.0), then we will up it to 300mg.
?
I do have a question that perhaps someone can help with. ?I know there is an increased risk of flares during this period. ?I have had none yet. ?But, I am having some varied and weird joint pain all over. ?I am a competitive hockey player (I know, good choice for a gout sufferer) During a game last night, one knee hurt, then the other, then they subsided, and now my ankle and wrist hurt. ?Have others had this same experience?
Thanks all,
I am not sure about the risk of flares being increased with allopurinol. If anyone has trial data on this, I would be pleased to see it.
My saying is “There is risk of a gout flare when you lower uric acid. There is certainty of a gout flare when you do nothing.”
The flares are certainly different, in my experience. Much shorter duration ? one or two days compared to 5 to 7 days averrage pre-allopurinol. Also much more random. Pre-allopurinol, I recall periods of one joint being affected by a series of flares over a few months, then a different joint – now it is a different joint each time.
For anyone contemplating allopurinol (or other uric acid lowering treatment) I would say, prepare for gout flares ? do not expect them.
My doctor prescribed colchicine, with the recommendation that I took 2 a day for two weeks when starting allopurinol, when increasing the dose, and whenever I experienced a flare. I learned that colchicine slows or prevents inflammation spreading, but does not directly reduce pain, so I occasionally supported it with ibuprofen. I may not have totally fixed the gout yet, but I have beaten the pain. It is good to be in control, and whilst I am still prepared for gout flares, I do not worry about them.
?
Prepare for a flare. If not there, don't care.
Thanks Keith,
I also used to have one-joint-repeat-flares, and have now moved to many joints and more random. ?However, they really aren't flares like I have had in the past. ?They last a matter of hours or one full day – then they are gone.
?
Don't get me wrong, I'm not complaining 🙂 ?Just wondering if other have had this random multi joint short duration pain?
The lower the dose of alloupurinol, the greater the chance of gout flares, or even a frank gout attack.
?
Now that you have ascertained over two weeks that you are NOT allergic to allopurinol (like almost everyone who has ever taken the drug) I wonder what your doctor intends to find out by giving you 200 mg, yet another sub-standard dose of the medication, risking yet more flares.
?
Oh well, I guess he can take solace by saying “Hey, it's not MY foot!”
?
I must say Ashley that your narration of the pseudo gout diagnosis would have given me a good laugh but for the fact that I knew every word was true: “?photographs taken during arthroscopic surgery which
showed deposits which appeared to be CPPDD deposits.”Wouldn't it have been nice if the surgeon was actually WATCHING during the surgery so he could have taken a sample of the mystical pyrophosphate. My technique is to?observe a surgeon before an operation ?and if I suspect a seeing eye dog by his side or dark glasses at night?to look for another doctor.
Okay I WILL laugh: diagnosis by picture. It really is worthy of Laurel and Hardy. :D:D:D
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