Keith’s GoutPal Story 2020 Forums Please Help My Gout! Don’t Know What Else To Do……HELP!

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  • #3283
    Gout_Gal
    Participant

    I have recently been diagnosed with gout and have been suffering through my first gout attack for about 3 months now.  I don't fit the typical gout suffer's profile.  I am a 26 year old woman, healthy body weight, and have been very physically active until the gout hit.  My doctor prescribed Colchine which I was taking when the attack first hit which did help with the gout pain (which is in my big toe) but made me very sick.  I've been on a lower dose of this for a while and am not taking Allopurinol as well since this first flare up won't seem to go away. 

    Alcohol definately is a trigger for me.  I first knew something wasn't right with my toe when I woke up 3 MondayS in a row unable to walk.  It seems that drinking on the weekends was causing the gout to flair.  Since learning this I pretty much cut out all alcohol, meat, any and everything that I have read that could possibly be a trigger.  I'm taking so much medication every day not to mention drinking cherry juice, eating cherries, and taking vitamins/supplements which I have read can help gout suffers.  While my gout has sure gotten a lot better than it was at it's worse (where I couldn't walk and was up all night screaming in pain) it still hasn't gone away and I feel like my life has been hijacked!  I'm at my wits end and don't know what to do next.  I just want to eat a hamburger and have a beer and I feel like I can't for fear that I will be right back where I started with this whole terrible thing. 

    What I want to know is is this normal?  Should a gout attack last this long?  I've read that Allopurinol can take a while to start working and I think I've been on it for about 6 weeks now.  Should I stay the course and hope that it clears up soon?  Has anyone else dealt with this for such a long period of time?  My doctor is running more blood tests as we speak and sounds like she is going to refer me to a specialist but in the mean time I feel like I'm loosing my mind and I'm still in pain daily.  If anyone has ANY advice at all I would greatlly appreciate it!  I just want me life back…..

    #8893
    Utubelite
    Participant

    Gout_Gal said:

      I've been on a lower dose of this for a while and am not taking Allopurinol as well since this first flare up won't seem to go away. 

    What I want to know is is this normal?  Should a gout attack last this long?  I've read that Allopurinol can take a while to start working and I think I've been on it for about 6 weeks now.  Should I stay the course and hope that it clears up soon?  Has anyone else dealt with this for such a long period of time? 


    Hi Gout_Gal,

    You have written you are not takin Allopurinol and then you have written you are on it for 6 weeks. Which one is correct?

    It is possible to have pain for many weeks and even months as you would find many have reported here. In my case, I had the pain for almost 3 months as I was getting the pain coming back again and again when I would walk more. I found cherry juice, cherry eating  and other similar things having no positive impact on me whatsoever. After taking Allop for sometime, it went away.

    But it is important to have the right dose of Allop. If you are taking less than the effective dose, it would not help. What is correct dose depends on your SUA (Serum Uric Acid) levels.

    So, it is importnat that you get your SUA checked and then adjust Allop dose to bring it below 5 or even 4 depending upon what your levels are. And once you are on right dose, you would get back you life.

    So most important thing – findout what your SUA levels are.

    #8894
    NateA
    Participant

    Hi Gout_Gal,

    I'm sorry to hear that you've been stricken with this not-so-fun disease at such a young age.  My life with gout began at the age of 21 but it took me 15 years until I was properly diagnosed and treated.  Be thankful that you are treating this early!  Hopefully, with the right drugs and lifestyle tweaks, you will be able to return to a life that you are used to living.  This is something that I am hoping for myself, but it's going to take some time.

    The best thing you can do right now is find a good doctor who will get you on the correct amount of Allopurinol.  Monitor your Uric Acid levels often to make sure your dose of Allopurinol is working.   You may experience some bad attacks while starting the Allo, but be assured this is just your body getting rid of any excess UA that may have built up in your joints.  It will get better with time.

    Good luck, and welcome to the club! YellWink

    #8896
    zip2play
    Participant

    GoutGal,

    Like Utube, I have trouble interpreting your post but I take it to mean you WERE on allopurinol but STOPPED wjhen this attack began. But then you say this is your first attack. It cannot be so because then you would not have been on allopurinol in the past?????????

    Fill us in.

    You've undoubtedly read my recommendation for colchicine use in a protracted attack: 2 to start then one an hour until:

    cure,

    diarrhea, or

    16 pills.

    Once you start allopurinol you are NOT supposed to stop it for any reason other than acute allergic reaction. Do NOT stop it during a gout attack.

    #8900
    Gout_Gal
    Participant
    #8901
    Gout_Gal
    Participant

    Sorry in re-reading my post I realize that I misspoke.  What I meant to say was I've been on a lower dose of the Colchine for a while and I am taking Allpourinol as well, but this first flare up won't seem to go away despite all the medication I’m on.  I've been on the Allpourinol now for about 6 weeks but I gradually increased my dose for the first 4 weeks until I got up to 400 mg, which is the dose I have been taking now for 3 solid weeks.  My doc wants me off of the Colchine completely but I have been in pain so I have been taking Colchine when the pain gets bad.  I've read that Allpurinol can actually cause gout to get worse at first so I figure taking the Colchine sometimes can't be that bad. 

    Thank you for your responses and suggestions.  I did have my UA levels tested the first time I went to the doctor with my toe pain and they came back at “normal” levels (whatever that means).  My doc told me that UA levels don't always correlate to gout, but this seems to be contradictory to everything I have read on this and other websites.  I think my best bet is to get a referred to a specialist because my doctor doesn't seem to know what to do with me.  The only thing she told me when she suspected I might have gout was to “go read about gout.”  I was offered no explanation really of anything.  She didn't tell me foods to avoid, lifestyle changes to make, nothing.  I've just been kind of winging it and trying to figure all this out which is part of why I've been discouraged with this first gout attack lasting for nearly 3 months now. 

    Again thanks everyone for reading and responding.  Sorry again for that confusing first post.  Hopefully this one makes a bit more sense! 

    #8902
    NateA
    Participant

    Gout Gal ~ I've summarized a few things on my gout blog that may be of some help to you.  Check out the 'First Steps' page here:

    http://goutactiveperson.blogsp…..steps.html

    I mainly wanted to point out this particular fact, though: 

    Taking blood for a UA test while in the midst of an attack will usually return lower UA readings than you would expect.  This is because much of the UA in your system has been deposited in to specific joints and is not circulating freely in the bloodstream.  Always try to get a UA reading when you’re feeling healthy.  This will give you a truer measure of your day-to-day UA levels.”

    Of course, all of this information is available on Gout-Pal also.  I know that it can be confusing to wade through it all at first, however!  I created my gout blog basically so I could track my own day-to-day progress and to help me identify possible triggers for my attacks.  I also put it all out there in the hopes of helping others that may be in the same boat as me.

    Anyway, I think your #1 priority right now should be finding a good doctor or specialist that you can trust and who is familiar with gout.  Don't waste your time on a doctor who isn't going to help you or who is only going to guess at what to do.  There are proven steps for treating gout and you need to find a doctor who understands these steps!

    Best of luck to you!

    #8968
    davidk
    Participant

    gout gal-  the specialist you want to see is a rheumatologist.

    #8978
    cjeezy
    Participant

    Gout Gal, I was in the same boat as you at one point (I’m 31 yrs old now). After about a month and a half of the attack from hell! I was feeling a little better, but NOT good enough. Out of shear desperation I took Zips advice and popped 2 colchicine in the morning and took another ever hour for about the next 10 hrs (12 pills total). At that point I stopped as I felt no relief and felt it wasn’t working. The reactioon for me was delayed and the next day whoa! Lets say I ran to the bathroom a few times lol. Anyways, I felt great ever since. For some reason doctors do not like prescribing more than 2 colchicine’s per day. Dunno why.

    #8979
    trev
    Participant

    Quote:  For some reason doctors do not like prescribing more than 2 colchicine’s per day. Dunno why.

    From a ways back, I remember reading about a case of a child taking Colchicine for another illness ( familial fever of some sort) who died after 7 tabs and taking a lot of fruit juice (pineapple?). This is obviously a rare , special case, but enough to make Docs leery (me too, a bit) but if you need to do more that is certainly within precscribed limits, normally.

    Many drugs don't like quite normal foods mixed in excess- and on top there's the fact that the immune sytem  (which is involved in Colchiicine action) is also very much a variable between users, indeed like the response to gout itself.

    I found out too late, that Colchicine does not mix with Statins either – but actually use niether of late , fortunately.

    #8983
    hansinnm
    Participant

    trev said:

    Quote:  For some reason doctors do not like prescribing more than 2 colchicine’s per day. Dunno why.

    ….


    Please, let me repeat an earlier post of mine: 

    My GP, way back (26 years ago) who diagnosed my gout correctly, recommended 2 Colchicines and two Naproxens/day (today over-the-counter: Aleve) till the attack was over. Philosophy, theory, hypothesis: The Colchicine works on the inflammation (which causes the pain), the Naproxen/Aleve works on the pain. Neither Colchicine nor Naproxen/Aleve do anything to treat or deal with your gout. All they do is dealing with the symptoms of your gout: that is inflammation and pain. So, if you take Colchicine only, while it will reduce the inflammation, your pain will still continue until the inflammation is totally gone. That's the reason why doctors recommend continuing taking Colchicine for at least another week after the inflammation is over, to assure that it will not flare up again which it can and will, if you got lots of uric acid/ MSU floating or deposited in and around your joints.

    The only meds which will work on your gout directly or indirectly are: Allopurinol, Uloric/Febuxostat, Probenecid (Benuryl) and one other one (I don't have the name at the tip of my tongue right now) which is physiologically doing what Probenecid does.

    There is a distinct difference between Allop. & Uloric and Prob. & 1 other: The first two work on your system/body/metabolism to prevent creating more uric acid (turning the purines of your food into UA), the second two aid your system/body/metabolism, especially your kidneys to get rid of excess uric acid/MSU. A doctor, preferably a rheumatologist, is the one to guide and advise you which one to take.

    You need to be very much aware of the side effects of the various meds.

    #8989
    jfee
    Participant

    The one thing that has always worked for me that I haven't heard anyone mention yet is Indocin.  If I take it when I first feel an attack coming on, it has worked for me much better than colchicine and leads to more pain relief.  That said, I have had attacks that have lasted for months (specifically in my elbow).  I am intolerant of any of the maintenence drugs, so I can't take Allopurinol, Uloric, Probenicid or any of the others.  Hope it feels better soon!!

    #8991
    Utubelite
    Participant

    jfee said:

    The one thing that has always worked for me that I haven’t heard anyone mention yet is Indocin.  If I take it when I first feel an attack coming on, it has worked for me much better than colchicine and leads to more pain relief.  That said, I have had attacks that have lasted for months (specifically in my elbow).  I am intolerant of any of the maintenence drugs, so I can’t take Allopurinol, Uloric, Probenicid or any of the others.  Hope it feels better soon!!


    Good for you that Indocin worked. I was prescribed Indocin and I took it for 10 days. For me, it was total waste, less than 5% improvement. Doctor gave me 100 tabs to keep for future use as well. I trashed them all. Colchicine worked very well for me. I think, it is all person to person thing. Thanks god there are many medicines and we can hopefully get one which works for us.

    #9000
    zip2play
    Participant

    jfee,

    Indocin (indomethacin) is a good joint and muscle analgesic. I tried it LONG ago with some success but found two problems with it: it SLIGHTLY upset my stomach afer only a couple days (tolerable), but worse, it made me VERY dizzy (intolerable.)

    My sister likes it for aches and pains.

    GoutGal,

    How are you making out?  Not to be repetitious but for any attack that goes on for weeks and weeks I think the only GOOD answer is high dosage colchicine for one day…up tii 16 pills.  It has been the method of choice for 2,000 years and now doctors (who have never had gout) piddle around with 2 or 4 pills with evidence based on NOTHING.

    #9007
    jfee
    Participant

    I've learned to manage the symptoms, and for me, the level of relief that I get makes it worth the hour or two I have to suffer through with the side effects.  Although I also admit that I take it at levels that I won't mention here, levels that frighten my doctors.  But I've seen it shorten attacks that would have lasted weeks down to just a couple of days.  I'm sure that wouldn't be the case with everyone, and the more I read here, the more I realize that there is something physiologically different about me from a lot of other people, but I just thought it would be an option for someone who wasn't getting relief with anything else.  I know, as I'm sure we all do, that there have been times when any of us would try anything that made sense and even some things that don't if it would just take the pain away!

    (oh, and the last time I took more than 2 .6 colchicine in a day, I was in the bathroom every half hour for twelve hours.  Seems I have a sensitivity to that, too!  I'm finding out that I have some very wierd reactions to drugs compared to most of you!)

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