Keith’s GoutPal Story 2020 Forums Please Help My Gout! Colcrys (Colchicine)?

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  • #3661
    darrenbruin
    Participant

    I have heard suggestions from friends and relatives about Colcrys (Colchicine). Anybody has additional useful infos or first-hand knowledge of it and how well it works? both as preventative and also as treatment for gout attack? Thank you.

    #12122
    limpy
    Participant

    It will stop an attack but you should take it as soon as your sure your having one.?I take one Colchicine twice a day as a preventitive?to keep the pain a way. The bad things are running to the bathroom at a moments notice and the price jump. It went from $28 to $310 for a months supply whitch for me?is 60 pills or about $5 each. Lucky for me?I still have insurance so thru Caremark with my copay its about $90 for 3 months. Limpy

    #12124
    darrenbruin
    Participant

    Thank you limpy for both of your answers.

    #12125
    drmarclevine
    Participant

    It works extremely well.? Of course, it's not addressing the root cause of your gout –that would be elevated uric acid levels in your blood — but the colchicine will reduce your pain.? I take two 0.6mg pills per day for flares without any stomach issues, though your mileage may vary.? It can be used as a preventive measure but I wouldn't consider it a long-term strategy since all? it's doing is getting in the way of the imflammatory process, not doing anything about your uric acid.? Talk to your doc about Allopurinol as a long-term gout management approach.

    #12126
    limpy
    Participant

    drmarclevine said:

    It works extremely well.? Of course, it's not addressing the root cause of your gout –that would be elevated uric acid levels in your blood — but the colchicine will reduce your pain.? I take two 0.6mg pills per day for flares without any stomach issues, though your mileage may vary.? It can be used as a preventive measure but I wouldn't consider it a long-term strategy since all? it's doing is getting in the way of the imflammatory process, not doing anything about your uric acid.? Talk to your doc about Allopurinol as a long-term gout management approach.


    Yep,?I agree with this .?I take 200mgs of Allopurinol a day and?I wish that it would keep the pain away but it dosen't. So i'm stuck taking the Colchicine.?I wish there was another way but without it in a short time?I can't walk cause of the pain. Limpy

    #12127
    zip2play
    Participant

    It is extremely effective in stopping an acute attack of? gout.

    There's a lot I can say about colchicine:

    Firstly it is the oldest drug, it was used in ancient Egypt and Greece for gout. It is called an “orphan drug” because nobody ever held the patent on it. (Even aspirin was patened a LONG time ago by Bayer.)

    ?

    When I first discovered I had gout 20 some years ago the PDR recommended dosage for “frank gout” was 2 pills (.4 mg.) and then a pill? every hour until diarrhea started, gout pain ceased, or 16 pills was reached. This method works to stop the most vicious attack. The drug cost about $4 for 30 pills retail.

    ?

    Big Pharma despises orphan drugs so a company submitted a study on this ancient drug and showed some nonsensical results…that colchine worked for gout…?to the U.S. FDA who, for some reason probably involving satchels of money trading hands, gave the company a patent on the drug and BANNED all U.S. sales of colchicine made by a half dozen generic manufaturers.? The price was immediately raised to about $150 for this 30 pill supply making one company deliriously happy and rich. Gout sufferers got f&*ked.

    ?

    To make the price seem palatable the recommended dosing was slashed to a couple pills on the basis of this “study” which showed something?like?half of those studied reported pain was cut in HALF. Wow…a drug dose that cuts pain in? half.? Gee, who would expect a dose that eliminated pain completely?

    ?

    Colchicine is rife with side effects and so I hate to see people taking it daily. But since doctors feel obliged to obey the silly 2 or 4 pill dose that will NOT stop a major attack (or cut the pain in half either) then that is what they will prescribe. Few doctors can think beyond what a drug company advert tells them especially if the drug is extremely expensive and the kickback from the drug company generous.

    #12128
    zip2play
    Participant

    limpy,

    ?

    Youu say you are taking 200 mg. allourinol but keep having pain? Have you tried 300 mg.? What kind of SUA's do you get with 200 mg.?

    #12129
    limpy
    Participant

    Hey Zip i'll give you a quick run down. The pain started two years ago. I went thru all the tests finally joint fluid showed Gout. Started on 200 mgs Allop and?1 Colchicine twice a day. That was about 16 months ago.?I was told?at the time that after a year on the Colchicine and keeping my acid level down?I could get off it and it would be like?I never had Gout as long as?I stayed on the Allop. Since then everytime?I try to ween myself of it the pain comes?back.?I told my rhummy about it and the price jump he perscribed 500 mgs Naproxen?twice a day. Well since i've been in Afib twice in the last two years i'm kind of scared to add any more meds to the mix. altho my heart dr. said the Naproxen would be ok?i'm still a little leary.?My last blood test was in Feb.?and my acid level was 3.90.?I questioned the dr. about the test results?wondering if there may have been a mistake cause of the pain he just kind of blew it off. So thats where i've been every since. Limpy.??

    #12154
    zip2play
    Participant

    Limpy,

    ?

    I typed about 1000 words that flew off into the ether…DAMMIT.

    ?

    Maybe later.

    #12157
    limpy
    Participant

    I'll be waiting.

    #12159
    hansinnm
    Participant

    limpy said:

    I'll be waiting.


    Better get an extra supply of Allo, Colchicine and Aleve to tie you over.wink

    #12161
    zip2play
    Participant

    Hi limpy,

    ?

    Coincidentally I also had 2 bouts of afib?the first, a decade ago, ?was at something close to 250 beats per minute. I went white? with terror. ?I went downstairs and sat with my doorman giving instructions to call 911 if I hit the floor. It lasted about 20 minutes (took 10 mg. valium and 2 aspirin) and suddenly returned to normal.

    Second time I went to ER after a couple OLD nitro-pills didn't work (I SHOULD throw out old nitros.) After 2 hours everything was fine with a beta blocker so I checked myself out (overnight on Medicare is $1100 out of pocket.)

    ?

    Make sure you take your daily aspirin because afib can initiate clots.

    ?

    A friend does reallly well on daily?sotalol after he got sick of monthly trips to the hospital for painful electroversions.

    ?

    You know, with gout conjfirmed by crystals, it seems improbabl that you would get a 3.9 mg./dL (not 390 in molar units right?) That seems too low.??Have you had confirmatory results? If I go to a doctor for a cold I ask for a uric acid test.

    Make sure you confirm the 3.9 because it sounds suspicious?and shouldn't allow attacks. Definitely do not try to throttle down your allopurinol based on 1 reading AND a continuance of pain.

    ?

    There is a little bit of controversy about whether Naproxen interferes with the platelet destickification of aspirin? Some say yes, some say no. (Have you ever done heparin or warfarin?)

    Have you ever tried indomethacin for pain? <Mumbling obscenities about the crooked colchicine patent.>

    ?

    Why not give 300 mg. allopurinol a shot which offhandedly makes the assumption that the 3.9 reading was wonky? If your pain goes away that will tell you a lot.

    ?

    (Well, I forgot most of the rest of the 1000 words but I'll let it go at that.)

    #12162
    hansinnm
    Participant

    zip2play said:

    You know, with gout conjfirmed by crystals, it seems improbabl that you would get a 3.9 mg./dL (not 390 in molar units right?) That seems too low.??Have you had confirmatory results? If I go to a doctor for a cold I ask for a uric acid test.

    Make sure you confirm the 3.9 because it sounds suspicious?and shouldn't allow attacks. Definitely do not try to throttle down your allopurinol based on 1 reading AND a continuance of pain.


    Limpy's 3.90 mg/dL, coming from a US of A lab or gouty is very suspicious and getting the SUA level down to 3.9 on 200 mg Allo
    sounds even more suspicious (at least to me.confused) Remember, Keith had to go to 900 mg to get THAT ?low. ?

    #12163
    limpy
    Participant

    Thanks Zip and Hans,?I agree that 3.9 sounds low for only 200mgs Allop.?Thats why?I ask my dr. if there was a mistake. And?I will get it checked again.?I would gladly take another 100 mgs of Allop. If it would clear up the rest of this pain. Zip yes?I take a 81mgs asprin a day. My Afib started in Dec of 2008 a week after having a para thyroid gland taken out. They told me at the time it was probably due to them moving my thyroid around and it could have released some enzymes. Then last year?I started getting muscle spasms all over my body including my eye which caused my vision to jump all over the place. It was every upsetting. Since the last med?I had added to the mix was a bata blocker called Bystolic?I thought it could be the cause.?I asked to try a different bata blocked to see if it would help. They gave my Atenanol. That night?I took it and went to bed two hours later?I woke up in Afib.?I went to the ER and they said?I didn't have enough Atenanol in me and tried to get me to take two more which?I refused.?A nurse told me later it was good that?I didn't take it as my blood pressure had been dropping. That was last Nov. Since then I've had a few flutters and some skipped beats but I've been doing a lot better since April when?I started taking an amio?acid called Taurine it has made a world of difference.?I showed the bottle to my heart dr. and he said it won't help you but it won't hurt you either. Later?Ihad joy of telling him he was wrong. As far as uping my dose of Allop to 300mgs I've tried several times with three different doctors they all said no.?I guess I'll see what they say after my next blood test. Limpy

    #12164
    hansinnm
    Participant

    limpy said:

    ? As far as uping my dose of Allop to 300mgs I've tried several times with three different doctors they all said no. I guess I'll see what they say after my next blood test. Limpy


    Limpy, if you don't mind me telling you: Get rid of all three (not doctors) pill pushers. It's your body, not theirs and if you want 300 mg Allo they should give it to you. If they are scared of a law suit, maybe they have a good reason. An even better reason to get rid of them.
    ?

    To my knowledge, NO ONE EVER DIED OF 300 mg Alloyell, but a lot of people died because of “doctors' stupidity.

    #12165
    zip2play
    Participant

    limpy,

    ?

    We await your next SUA reading.

    ?

    If your a-fib? starts acting up again ask for sotalol. It has recently gone generic so the price has fallen from breathtaking peaks to very affordable.

    ?

    (I truly hate atenolol?and most everyone on health boards seems to agree.)

    #12169
    limpy
    Participant

    Hey Zip & Hans, I'm going in tomorrow to see a new doctor as I've been having more pain in my feet lately and as you guys said the numbers don't add up with that low of an acid level. Other then uric acid what other blood test should?I ask for? Thanks Limpy

    #12170
    hansinnm
    Participant

    limpy said:

    Hey Zip & Hans, I'm going in tomorrow to see a new doctor as I've been having more pain in my feet lately and as you guys said the numbers don't add up with that low of an acid level. Other then uric acid what other blood test should I ask for? Thanks Limpy


    My rheumatologist always orders a COMPREHENSIVE METABOLIC PANEL (18 items) plus the Uric Acid test.

    #12179
    limpy
    Participant

    Well met with the new dr had blood drawen now waiting for results.?I must say I'm not really sold on this guy. He's nice enough?but he kind of reminds me of a puppy very excitable and wanting to please. He asked if it was ok to have his?assitant sit in. Which?I ageed to. It was kind of funny he kept asking her questions. Like what meds could be used for pain and what was best to lower uric acid. When he ask her what meds would give people Gout??She replied?I should know this and started going thru her little book.?I said HTZ and you would have thought?I hit the lottery he was beaming. Your right he said how did you know that . So?I told him about this site and that?I had probably read more about Gout than him and her put together. We then talked about the trouble I've been having and me doubting the results of my last test. He brought up Uloric which?I shot down telling him altho at this time?I have insurance. That could change in the future and?I could not afford $5 a pill.?Also?I thought the Allop was doing fine as far as that went that?I might just have to up the dose. He said he'd have no problem upping the dose depending on the test.?I told him if?I increased the dose I'd like to go up 50mgs?for a month and then another 50 after that. He said that?I seemed to have an idea what was best for me. Thats where we left it. LIMPY?

    #12180
    Keith Taylor
    Keymaster

    limpy said:

    He said that?I seemed to have an idea what was best for me. Thats where we left it. LIMPY?


    That's the best way to train your doctor. Go prepared with a few relevant facts, but don't show off. Just convince them that you know exactly what you want, and why you want it. Once they realize you know what you are talking about, they soon come on side.

    I'm not trying to start a Doctors Appreciation Society, but I have spoken to one or two doctors as friends or acquaintances – they get really pissed when patients start spouting loads of stuff they've read on the Internet, without any thought about what it really means, or how it affects their particular case.

    Thank you for mentioning this site, limpy.

    #12181
    limpy
    Participant

    Hi Keith, If?I hear anyone even mention Gout they have my full attention. As far as this site. It's the first thing?I?tell them to check out?for help with this curse. Now?I have a question about Allop. If my uric acid level test comes back and it shows that I'm still around 3.9??Would it hurt to add another 50mgs of Allop to my 200 or would that drop my level to?low? What is to low? I'm so much better than?I was?when?I first start?taking Allop and Colchicine. About 18 months ago.?At that time?I was to a point where the pain so bad?it was all?I could do just to hobble ten feet to the bathroom. Walking on my heels and the sides of my feet.?I remember thinking that I'm not going to go thru the rest of my life in this kind of pain. When the pain?lighten up the next day?I?sent my handgun home with my brother. Just to get it away from me so?I wouldn't do something in a moment of weakness?that would cause my family and friends?pain. Now days?I start out in the mornings with my feet feeling pretty good but if I'm on them a lot by the end of the of the day?I have quite a bit of pain and a little bit of swelling but no off color or heat in them.?I can't be on?concrete any time at all?or my feet a just start?pounding.?My hope is this will get better if?I increase the Allop. Limpy???

    #12182
    limpy
    Participant

    Well?I just got my labs back uric acid is 5.40 which?I was told again?(is in the normal range)?My new?doctor?said?I could increase my Allop if?I wanted.?I have a couple questions. Can you drop your acid level to far? I'm thinking of adding 50mgs for two weeks then another 50mgs after a that. So my total would be 300mgs a day. Does that sound about right? Limpy

    #12183
    zip2play
    Participant

    limpy,

    ?

    That 5.4 MG./DL? sounds more like it… and it is quite good.

    ?

    But if you are? still having pain then the total of 300 mg. is more likely to abate the pain eventually.

    No, you really cannot have too low a uric acid. There is no real reason to go in two steps…taking 300 mg. tomorrow should be perfectly fine.

    #12184
    limpy
    Participant

    Thanks Zip, The only reason for the slow increase is?I didn't want any reaction from it.?I always try to go on the slow side of things when it comes to meds.

    #12188
    eric ryan
    Participant

    Okay, after reading this thread I have a few questions.

    ?

    I thought that once you had your uric acid level in check (below 6.5 or so?) that you were pretty safe to not form NEW crystals? If that?s the case, why should we strive to make it even lower? I am not doubting anybody, just trying to learn. Mine was 4.6 last time it was checked and 5.4 before that. BUT, I still have major pain. Its like everything is great, EXCEPT the crystals are not dissolving for some reason. Also, the pain has also started a bit in my knee and wrist (it has always been in my feet). Are these new crystals or old ones moving around? I don?t understand how I could be generating new crystals with a low UA level. BTW, I haven?t eaten red meat, fish or seafood in 3 months ? drink tons of water and maybe have a drink a week.

    ?

    Again, sorry for the rambling. New here and anxious to learn and understand why this living hell has enveloped me.

    #12189
    limpy
    Participant

    Some people think that the lower your levels are the quicker the crystals will melt away. Once?I got my level below 6 my rhummy said I'd be fine if?I just rode it out.?I thought that was pretty brave of him since?I was the one in pain not him. As for the pain your having. Have you tried Colchicine? It will make you run to the bathroom but at lease you'll be able to run. If your at 4.6 I'd bet your pain is from old crystals melting from everything I've read they won't form below 6. How long have you been on Allop? I know as soon as?I started on it?I got another attack. So if your just starting on it. It may be a while till?your pain lets up. Colchicine will stop an attack so if your dr. hasn't offered it I'd be asking him for it. Good luck. Limpy?

    #12192
    zip2play
    Participant

    eric,

    ?

    Below 6.0 is GENERALLY safe, 6.5 not so much. BUT fluctuations, perhaps WIDE occur during the day week or month and thus if you get a 6.0 at the doctors office, often on a fasting sample (for cholesterol etc.) who is to say you won't see a 7.5 after a big shrimp dinner with a couple pints of ale.

    Precipitation of urate is extrtemely sensitive to the inverse of temperature and thus the 6.0 rule may work in your heart at 98.6 degrees, but not so in your toe at 70 degrees.

    ?

    An localized acidic environmnet caused by inflammation of any kind will precipitate uric acid at quite low levels.

    ?

    So all of these variable are the reason why a 4.0 is safer than a 6.0, a “safety factor” if you will.

    ?

    Personally I do not ascribe too much to the “dissolving crystals” theory. I think most of the crystals that are laid down and scarred over by the immune system will be with us for a mightly long time. The body has isolated them to the best of its ability.?Best to concentrate on NO NEW ATTACKS…and let the crystals fall where they may.

    ?

    (Keith is experimenting with 900 mg. allopurinol to try to eliminate some tophi…we await the Lancet article.)

    #12200
    eric ryan
    Participant

    thanks for the info guys. btw, i have been on 300mg allopurinol for 5 months and .6mg colcrys for about 2 months. i asked the doc if maybe i should move up to 1.2mg of colcrys since it seems low and he has not gotten back with me yet.

    #12201
    eric ryan
    Participant

    just got back from pharmacy and he has me on 2 colcrys a day at .6mg each. hope this helps, but also kind of scary that i am dictating my treatment.

    #12202
    limpy
    Participant

    Yeah?I know what you mean. For over a year?I tried to get three different doctors to up my dose of Allop from 200mgs to 300 mgs. None would do it. Then?I get this new young doctor?and?I talked him right in to it. It kind of makes me a wonder if i'm doing the right thing. But?I just want to get rid of this pain.?I guess time will tell. Limpy

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