Back on the colchicine
started occassional weakness/instability left leg. Kept feeling moreand more like my leg was going to collapse..not support me.It feltwobbly,weak.Yeah..kind of scary..VERY un-nerving.This came and went.Iwas unable to isolate when/what factors were involved.At times therewas a feeling that the muscles around the knee..and supporting itwere tired/weak..fine tremors that you get from exhausted muscles.Itseemed to occur ONLY at that point when going from full extensionBACK to bending it slightly.From there on it felt ok. Anyway..it was time for medical intervention.I had guessed sometype of nerve problem..and a tests/neurological etc.
I am very fit,healthy,perfect diet..blah blah blah
A whole rheam of blood tests.
Rhuematolgist confirmed muscle atrophy at the bottom of the quadand basically in the surrounding area..ligaments etc just above theknee.Muscle atrophy when you spend an hour literally every day hikingin the ravine with your dog at a elveated heart rate.Not good.I hadheard and read that allo can cause this..I had maybe guessed this.
ALL the tests going back to my pre-gout pre allopurinol days weremeaningless.They were ALL pretty much identical..the ONLY differencewas a 30% reduction(continuous/constant) drop in uric acidlevels..from 4.5 to 3..(allopurinol)
I also at times cycle hard and ski hard a LOT winters.
The rheumatologist figured that with the uric acid that low it washighly unlikely that my body was adding anything to the uric acidthat was there.(PERHAPS? I need to add some grain alcohol..HAHA)Hefigured this problem was the result of uric acid that was alreadythere..been there for a LONG time.The sheer amounts unable to bedetermined..BUT somehow? they had to find their way back into thebloodstream.They had moved around and ended up here..just above theknee.He said this was a common spot for uric acid deposits.
Once there..basically at the base of the quad just above theknee.The base of the quad,ligaments are more or less saturated inuric acid.There are the factors of reduced circulation,the actualwhite blood cell activity..there could be crystals..OR a mix ofcrystals(phagocytes)(( the resultant death of cells involved in thebattle..mixed with white blood cells)) there could be some tophi.Iasked him about screaming heart rates and SEVERLY loading thequads..only adding to the problem of excess uric acid being added atsource.He wasn’t sure about that but felt that exercise clearly woulddo no good..and NOT to do strenuous exercise for fear that the kneecould end up at a weak angle and be exposed.I did have pretty strongquads..at one time being able to machine leg press 750 lbs..and crack2 minute half miles(1.52 best..woo hoo).My last bout of cripplinggout..right before allopurinol saw me lose 6″ off my quads..30 -24.He figures that the nerve endings in the area are simply beingexposed to too much crap..and this has and is affectingtheir “firing”..and they are shutting down..atrophi.He feels thatwith this nonsense going on there has to be white blood cell activityand there has to be that whole problem of excess uricacid/crystalization/phagocytes/tophi perhaps/impairedcirculation/nerve end problems/perhaps ligament problems.
“Dunh de dun”(horn trumpet please)..the almighty colchicine to therescue.He figures that this will “seperate” the “combatants”..andallow the “road to be cleared”..
And I THOUGHT I HAD!! my year and half on colchicine..
On pretty careful review of this..it simply cannot be determinedfrom tests actually when I was on/off the colchicine.Had really noeffect.OTHER than to “save”(LOL the ONLY time I have been “saved”)me from the horrors of gout.
Plan is a couple of “hits” a day for a few weeks.IF I get a day ortwo with no problems then I am CLEARLY on the right track..and fromthere..it is a year of twice a day.
True..I don’t have to go with this plan..and I COULD seek adifferent way.I simply do not know enough about this to know/beginwhere to look.One thing is FOR SURE!..this is BAD and a couple ofweeks of colchicine isn’t going to hurt.I AM GOING to do that muchanyway.This is CLEARLY a deal with this NOW situation(ski season iscoming..ROFL..LMAL…HEHEHAHA)HOPEFULLY I can being some muscleregeneration soon..BY SKIING.
I know that there are some STRONG! opinions on colchicine..andthere have been some rather “testy”..OK OK..arguments.My opinion hasbeen..take it if you have to.I feel that I now AGAIN have to.
Sabina Shamel on June 11th, 2007
Arnold. I’ll put down my thoughts more completely leter but to me, itseems clear that you should and can probably reduce your allo intake.You have been able to get your serum urate level way down and you maynot need it that low any more.
I suspect that you are having a reaction to allo and that it hasnothing to do with excess uric acid deposited or dissolved urate. Iassume you can get your blood urate level monitored and as long as itdoes not climb up to near the saturated level you should not begetting gout attacks.
If you remember I bemoaned the fact that there is no good way to knowhow much stored uric we have in our bodies and although urate is agood moniter of where we are in terms of active daily metabolism, ifyo have store houses left here and there, there is no good way tofigure that out.
I don’t want to scare you but the symptoms you describe are alsoconsistent with the early stages of peripheral neuropathy and if thatis it, the colcichine is not advisable. If it is peripheralneuropathy you should also be getting a slight loss of feeling inyour toes and the bottoms of your feet.
A friend of mine who also has gout and who was on allopurinol had theidentical symptoms you describe and you are going to laugh, maybe, atwhat he figured out it was.
He drank about a gallon of diet drink every day. The Nutrasweet inthe diet drink was doing him in. He cut out the nurtasweet and thesymptoms left for about three months. They came back in a differentway and he discontinued his allo. Discontinuing the allo brought himalmost over night relief. Actually it took about 3 days and now helives without allo and waits for another gout attack. Your gbout ismuch more severe than his so I don’t think you can discontinue alloaltogether but you certainly can reduce the dosage. If you remember Isuggested that the proper regime for everyone is to stay on max allofor two to three years and then to drop back to as little as you canwhile still holding the urate numbers in check.
Terrance Molock on June 12th, 2007
THANKS! so much for your help/concern bro!..
I had thought about reducing the allo and did indeed discuss thiswith the Rhuematologist.When I was crippled up with this in 2001 Ihad pretty consistent 4.5 blood uric acid levels..I was in a BAD wayand had a LOT! of tests!..when I went on allo my level dropped to 3in a week and stayed there.I had to go off allo after I had been onit 6 months.In 1 week my level rose over 5.Back on the allo..within aweek back to 3.We even talked about RAISING the allo..in order tohelp this along..OR other drugs.
LOL NOT! I have had the VERY beginnings of peripheral neuropathyfrom too much colchicine..and had to quit.I am AWARE!! VERY!! ofthat.But THANKS! for pointing that out.This was a factor..and wasdiscussed.
Tinkerring with the blood uric acid level.This was thoughtout..CLEARLY I have chronic gout with a blood uric acid level..LONGLONG time of 4.5.I have the tests going back forever.Keeping it at3..considerring my previous fast reactions to it..lowerring theallo..and perhaps risking more uric acid..ending up in that area hethought was too risky.I agreed.
I do indeed remember your EXCELLENT posts! about total uric acidload.The rhuematoligst and I went over this too..he said it is a 1-3year process..up to 10 to rid the body of deposits.He told me flatout that ANYONE when told by a medical Dr.and with the testsconfirming gout..AND who like me had made the decision to treat goutwith other means..as I did..for several years even when advised byseveral Dr.s/specilaists/other h/c/p to gets a D for goutknowledge.He said my not going on allo when I should have was a GREATfactor in my recent problems and I was EXTREMLY LUCKY to have gottenaway with it without permanent joint damage/erosion.He didn’t want toharp on it or lecture me as the “past can’t be changed”
I have had NONE of the symptoms of peripheral neropathy this time.
This “atrophying thing” with me is bad.Especially having been anathelete.My last pre-allo bout saw me go from FIT Very littlefat..217 lbs..up to 225 then down to 179.This thing now where thelargest muscle in the body..the quad..the bottom of it is atrophyingin an atheltic male..just above the knee..amongst the ligaments etc.is bad.I agree with the doc that this gets dealt with RIGHTNOW..HARD! FAST!..with whatever it takes.
I am EXTREMELY!!! PLEASED to say that I have 4 x.6 colchicine inme in 24 hrs.I do not know if this is coincidence..BUT I feelirritation there..above the knee..not bad..BUT I have NOT felt thatbefore..and it is moving around somewhat..BUT MAINLY..the leg/knee isstable..has been for about 8 hrs or so..it has been MONTHS since ithas been that stable..I have NOT gone even more than a few hrs.I amalso aware NOW of the weakness there in the muscle.Before there wasNOTHING at all..a lot of the time.Now..at least I CAN FEEL it.. From my knowledge of muscle growth/building..breakdown/soreness itfeels to me like it is starting to “fire” again..
Sabina Shamel on June 14th, 2007
So the theory is that excess uric acid in a specific area will, can,keep muscle tissue from contracting properly?
Possible.
Personal experience here. I was a tournament tennis player. Everyweekend I was off to another city for another tournament and itrained hard during the week. I was able to place the ball anywherewithin a three foot circle from either side. Several times during atournament each year, oh maybe 5 or six times a year, I would getinto a state that I would feel like I was ok but I just was not ableto keep the ball where I wanted and the result was that I playedalmost like a beginner. I was slow to run, and when I did get there Iwas unable to execute my shot.
I discussed it with my family physician and with a Dr. Friend andwith my dad, who is a physician and all agreed that it would beinteresting to have a blood test when I was feeling that way. Problemwas that by the time I got home and was in a position to actuallytest anything, I always felt fine and just didn’t bother.
Moving along. Now that I have felt the ravages of gout I am sure itwas caused by excess uric acid and as you know, as you train veryhard, you will cause muscle tissue to break down and that isconverted into uric acid. Therefore, I am agreeing with thepossibility that it might be uric acid causig the problem.
Now, more analysis….If your miscle is not firing, that is somethingthat can be measured. Neural transmission rates and intensity acrossspecific muscle groups can be accurately measured and your casedeserves to be measured.
Your current method of treatment is not a treatment, it is a band aidand I have a problem with it because you are not going to be able toget at the root cause that way.
Anyway, lets say it is excess uric acid in the area…
OK remember that if it has already formed, no amount of allopurinolwill have any effect whatsoever on that uric acid. All the allo doesis stop new uric acid from forming. So, by looking at blood levels ofurate and by lowering your allo you will be able to track yourimmdeiate urate formation. He is correct that it can take 10 years torid the system of uric acid but more allo will not make that processgo any faster. Either you have stopped the urate formation or youhaven’t and more allo than your system needs to stop urate formationis not going to affect that clerance process at all.
OK, so you have local urate concentration in the area, I can acceptthat, and I assume that you are talking about a billateral symmetriceffect and that makes me suspicious. At least in my experience goutsymptoms tend to be located in specific areas and never arebillaterally distributed. If it is a billateral involvement I suspectthat you two have made the wrong diagnosis.
Lets say again that it is uric acid, which I am doubting more andmore as i write, then if you sleep with a heating pad around theaffected area, and for God’s sake only keep it on the lowest setting,the uric acid will be driven into solution in that area and it willmigrate from that area faster. MOreover, if you only elevate thetemperature in one limb, and alsways that limb, that limb shouldclear much faster than the other and you will feel the differencewithin a week.
Arnold, I think you need to have a nurological work up. You need tobe seen by a neurologist and not a rumatologist. It is just too riskyto go on and miss a possible diagnosis just because you are a goutsufferer. You do not know that this has anything to do with gout oruric acid and although you and your Rumatologist may speculate, thereare other things that have nothing to do with gout that could begoing on and I feel it is negligant of him and frankly of you, toavoid carefully looking into other causes.
I won’t speculate on the other possicilities because you can do thatas well as I can. I will insist, however, that a neurological work upis in order.
Good luck and keep us informed.
(I do think you should make sure that it is not the allo though andif it is the allo, the symptoms will be gone in five days if you stoptaking it. If the symptoms are gone after five days of no allo, thenyou and your rumatologist have a balancing act to perform as to howmuch allo reduction you can tollerate.)
Terrance Molock on June 14th, 2007
Myself and the rheumatolgist both know..and discussed that theneural responses can be meausured.He felt that the time to act isNOW..hit the colchicine.I agreed with him.This rhuematologist is VERYlaid back..easy to talk to..a VERY humble fairly soft spoken man.AREALLY nice guy!..EXTREMELY easy to communicate with.Also one of themost intelligent people I have met.He is also a specialist ininternal medicine.He does refer to emergency room physicians with 8to 10 years experience as..fairly jr.He has almost a wall ofaccreddited degrees.Practicing right near a very large majorhospital..often called/working there.Helistens/answers/talks/writes/records while I am there.I am VERY luckyto have lucked out with this guy.He is the kind of guy that wouldWELCOME me seeking other information.Here inToronto..population..gotta be 5 million we CANNOT pick our specialists(govt health care).We MUST be referred to them..BY another Dr.Ithink if he thought at the time this might be necessary..he wouldhave done it.This hit the colchicine NOW plan is really only a 2 weekplan.IF it doesn’t work..THEN I call him.If if does work..then stayon it.I also see a foot specialist..I will go and see him shortlytoo.He is another top notch cookie..and also a high levelskier/instructor/race coach/patroller.I will also see my gp..anotherreal bright guy.I see a skin specialist too..as I do have a problemwith psoriasis flare ups..which we all know can quickly “flash” theuric acid levels up do to fast cell death.
Colchicine can allow the uric acid that is trapped to move.Thewhole idea is to get the excess uricacid/crystals/phagocytes/tophi/resultant mess from decomposedcrystals/cells etc. BACK in circulation and back in the bloodstreamto be filterred out.True..colchicine may indiscriminately take a fewinnocents/collateral damage..slaughter a few white blood cells..BUTit will most assureadly by the evil nature of it’s dirty work(cellmytosis etc.) bring about peace/stability to the region..and allowfor circulation/healing.This is what we are banking on.
I must say that after the colchcine on Friday I felt achange.Yesterday after more colchicine..as I posted this has been BYFAR the longest time since I have had FULL control of my leg formonths.Ditto for this morning.I am NOT one for feelings/anecdotalstuff/coincidences..and this only been a few days..but APPEARS to beworking..I of course will continue to post on the outcome of this.
I gotta tell ya..gout pain is just plain “horror” BUT THIS!..trueit is not painful..but is ALMOST as bad!! But in a differentway.Imagine yourself walking.You go to take the next step.Towards theend of the step the leg sortta flies out a bit..out of control..nocontrol..muscular over it..oh gee whiz..where is the foot ACTUALLYgonna get placed..oh there it has landed..”roughly” here..ok..now asyou move forward through your stride placing your weight uponit..WOAH!!!!..there is NO support there for a split second..your legflexes back and forth a bit as you begin to apply/struggle forbalance.At a small point of flexion in the lower leg..it seemsto “grab” the quads can NOW take over.This comes and goes..comes morethan goes..walking is becoming a bit of a wobbly affair..after awhile you learn to adapt..but this is just STUPID..leaving the kneeexposed.I have/had an EXTREMELY! sure footed gait/walk/movement.I amquick/strong/agile on my feet.And I ski this way.I can climb a ladderwith a 90 lb bundle of shingles under 1 arm and up over the ladderand up onto a roof.I can easily balance/bend/twist/contort..duringbuilding maintenance of the families rental properties/crawl up andunder the work vehicle.Play soccer like a 20 y/o.True..one day I’lllose it all..we all will.Gout seems to have been a BATTLE!!! for mefor YEARS..just to stay MOVING/WALKING..
SOooo when I get out of bed this morning and my walking is againROCK STEADY..I am AGAIN GRATEFUL..I gotta suspect that therheumatologist and the colchicine really put the boots tothis “different” kind of sumbitch gout attack.Time will tell.