Keith’s GoutPal Story 2020 Forums Please Help My Gout! At my wit’s end … Can’t Get Gout Diagnosis!

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  • #2923
    mathman
    Participant

    OK, this is going to take a while, so please bear with me.

    I’m a 30 year old man who has been having foot pain in various joints near my 3rd, 4th, and 5th toes for approximately two months.  It started off as a mild foot ache, which I was easily able to ignore.  One night, however, at the end of June, I woke up with a HORRIFIC pain in my third toe (MTP) joint.  My foot was so swollen across the top that every time I took a step it felt like the skin was going to break open across the top.  I went to the doctor IMMEDIATELY and he told me that I have gout.  He prescribed naproxen and allopurinol after taking my blood – told me to hold off on the allopurinol until blood results came back.

    Well, the naproxen did nothing, but a couple of days later, the pain subsided enough for me to walk.  The doctor called back and said that my uric acid level was normal and that it wasn’t gout.  So I made an appointment with a podiatrist.  He said that my symptoms (swollen foot, hot, mildly red, acute pain in joints) was indicative of gout.  But he did x-rays (normal) and an MRI, which was also normal, but said that I had a swollen foot (heh).   No joint abnormalities or stress fracture, neuroma, lesion, or anything else was visible.

    One other odd thing about my symptoms is that the pain seems to migrate.  It ALWAYS hurts in my third MTP joint, but lately the tips of my 3rd and 4th toes are big, swollen, and painful.  It never hurt there before.  The toes are also HORRIBLY stiff, and I cannot bend them – even if I get relief from pain, attempting to bend them is really awful, too.  I also have this rash in the middle of my foot that has been there for a while.  It doesn’t hurt, and it’s in the middle of my foot, but it is in line with the 3rd MTP joint.

    He also gave me oral steroids, which worked for two or three days, and then I was back to pain.  My pain from day to day ranges from mild to horrible.  To make a long story short, I had multiple visits with the podiatrist, who tried various therapies ranging from colchicine to indomethacin to steroid injections.  The only thing that worked well was the injections.  They lasted for a whole week and a half before my foot went back to its swollen and painful state.  Now, mind you, he told me to take the colchicine once every 8 hours because of toxicity danger, and I’m concerned about that, too.  So I’m not sure I did the colchicine thing right.

    After the podiatrist couldn’t fix me, he sent me to a rheumatologist.  He ran blood tests which showed that I had a mildly elevated sed rate, an insanely high CRP level, negative for rheumatoid arthritis, negative ANA.  My uric acid level was 5.9.  His diagnosis: gout.  He wants to put me on longer term steroid therapy, which concerns me because I am diabetic.  He said that there is virtually nothing else that can be done for me at this point, unless I want to try different NSAIDS.  He also says that he sees cases of gout attacks that last over a month all the time.  Nearly all of the literature I’ve read say about 10 days at the most.  I’m not saying it doesn’t happen, but I do my homework and I’m skeptical.

    I’ve found (accidentally) that eating strawberries will give me a couple of hours of relief, but the pain comes right back.  I’m eating a pound a day, and that’s what I get.  Cherries don’t do anything.  The black bean broth doesn’t either.  Tried apple cider vinegar also, and I don’t have relief from it, either.  I’ve also modified my diet to exclude purines more and I’m drinking one heck of a lot of water each day.

    My questions are:

    1.  Is this gout?  All the doctors say it is, but I’m skeptical.  My uric acid is right on that borderline, and this is a multijoint problem.  Also, it’s been going on for at least 5 weeks now in an “acute” phase.  What do you think?

    2.  If this is gout, what do I do?  Nothing seems to work.  All I haven’t tried traditionally is allopurinol, but I’ve heard that it can be harmful to take if you have a reasonably normal uric acid level, and I surmise that 5.9 is relatively normal.

    3.  What do I do to get answer and fix this?  I have a job that requires me to be on my feet all day, and this is really getting to be miserable.  I’m afraid that I’m never going to find out what this is and have some relief.  I don’t want to take steroids for the rest of my life (and besides, I have been taking them for about two weeks now and they don’t fix my pain anymore, anyway).

    I’m sorry to be so long winded, but there’s a lot of information, and I really need help badly.  Any suggestions are welcome.

    Thank you so much.

    ** Oh, and one other note:  both the rheumatologist and podiatrist said that the 3rd, 4th, and 5th MTP joints cannot be aspirated, so arthrocentesis is out of the question.  They said there was no way they could get enough fluid out of those joints to even try to test.  Not sure about this, but it’s one of the reasons we don’t have a definitive diagnosis …


    The Gout Sword of Damocles Strikes
    The Gout Sword of Damocles Strikes Another Gout Victim
    #5133
    trev
    Participant

    Everyone is different and diagnosis and drug regimes take time to get right.

    I reckon this sounds very Gouty.

    I've tried Strawberries and they cause me twinges if  eaten daily.They may have both good and bad effects- and taking a lot ,maybe isn't helping, right now. They are on some 'bad' lists-(Oxalates?)

    I had a recent attack where my last SUA was 6.5 and it went higher later.

    Is the rash speckled white subcutaneous spots? This could be tophi and a good indicator of gout.

    [Check in the recent Gout pics posting for comparison]

    Don't forget Gout is the most painful form of arthritis and genetic. You will find it hard to deal with a frightening first attack across multi joints and it will take time to get to the bottom of it. Work stress won't help and if you don't rest you will just suffer more.

    You will get a lot of help and encouragement here- so bear up -and take low level Colchicine as prescribed- it is usually kept to a low level by medics- but it will help if you have gout. Zip here loves to knock 'em back  Wink – but mine are prescribed up to 6 a day.

    It's not normal for Allopurinal to be started during, or too soon, after an attack, as it can make things worse before your system can stabilise on lower SUA levels.

    #5134
    mathman
    Participant

    Thanks for replying.  Let me answer your questions:

    1.  The rash is red, like prickly heat.  It is directly in the center of my foot – not ON the joint, but close enough.

    2.  Unfortunately, I'm a teacher, so I'm on my feet all the day.  Can't take off … but I'm worried because this has been going on for almost two months.  I said in my previous post that I was concerned about the length of the attack … and I'm suspicious overall that it is gout at all because of the fact that my SUA is only 5.9.

    3.  Colchicine doesn't do anything.  I took 3 pills a day for three days and got no relief at all.

    I really do appreciate the input.  Although I'm not happy there are others, it is nice to have the support.  This has been the most miserable month of my life. 🙁

    #5135
    pagey57
    Participant

    Hi

    I had a miserable year with it.

    It is only just settling down now.

    Colchicine was the only thing that worked for me but I took for about 6 days.

    I had to stop taking it it when I felt very sick .

    My doctor was very reluctant to put me on it but it was the only thing that worked for me.

    As for cherries and strawberrys they did nothing for me at all.As with all the other remedies.

    Good luck but remember there is no quick fix

    Cry

    #5136
    apcoach
    Participant

    baking soda always works to calm the attack for me.  i take a 1/2 tsp every three hours during an attack while drinking a ton of water.

    #5138
    mathman
    Participant

    I've tried baking soda and it doesn't really do much for me.  The only successful therapy I've found is oral or injected steroids.  The rheumatologist I have right now doesn't want to really do anything else.  Couple more questions:

    1.  This is my first attack.  How common is a multijoint first attack?  I have it in my 3rd and 4th toe at the joint and at the tip.  Also, my 5th toe at the joint is affected.  My foot is HUGELY swollen.

    2.  Colchicine seems to help others – didn't do anything for me.  Any ideas why?

    3.  My uric acid level is 5.9 currently … is this high enough for an attack?

    4.  Most importantly – what should I do?  Natural remedies don't work, and only steroids give me relief.  Can't be on those for long …

    MM

    #5141

    Uric acid in the blood can drop after a gout attack as some uric acid leaves the blood to form crystals in the joints and other tissue. However, it must have been above 6.8 at some other time for crystals to form in the first place. Do you have the numbers from your earlier tests? (numbers, not grades – normal means nothing in uric acid level tests.)

    I haven’t used colchicine, but I doubt that one every 8 hours is going to have much effect. Zip2play has recommended one an hour up to a maximum of 16, or diarrhea becomes unbearable. I do not like to put words in his mouth, but I’m sure that he would say that if this doesn’t stop the pain, then it aint gout.

    Gout often presents in different ways, and can strike in any joint. An uncommon multi-joint first attack makes me uncertain about gout, but does not rule it out. The fact that the attack has lasted so long also makes me suspicious of gout – yes gout attacks can last a long time, but in my experience this also involves uric acid levels above 7mg/dL (at some point, if not continuously).

    One thing is certain – if it is gout then it will become much easier to diagnose soon, because it will spread to other joints. In fact, if it is gout, there is probably enough evidence in larger joints such as the knee even now. The only other diagnostic tool is the DECT scanner, though finding one could be difficult.

    #5143
    zip2play
    Participant

    Yep,

    GoutPal, you got my colchicine routine down pat…feel free to put the words in my mouth at any time.

    Yep, Uric acid is apt to drop sometimes precipitously when an attack occur…the logic is simple, it leaves the bloodstream to coalesce in the infected joints.

    X-rays are not very good at gout…even for large tophi the effect is just some generalized fuzziness. Not sure what an MRI makes of it. Trouble is that a LITTLE uric acid can cause a LOT of pain.

     

    mathman,

    Since you cannot get a good diagnosis

    Do the colchicine routine, one an hour until pain relief, hideous diarrhea or 16 pills…if you want to stop at 12, that’s probably okay too. Though it’s not a 100% surety colchicine can be pretty diagnostic and it will give you at least as good an answer as you are getting from your doctors. If the colchicine at high dosage doesn’t work I think you can start looking for another disease. Three colchicine a day might be a reasonable preventative when taking allopurinol but it is NOT enough to abort an acute attack.

    But let me narrate my case in short: First attack was a crippling pain in the middle of the top of my foot…crutches for 3 days. I thought maybe I’d cracked a small bone. Several months go by and then crippling pain in ankle…crutches for 3 days. I thought I’d sprained it but couldn’t remember when. Then a nagging long-lasting pain in the bottom of a foot… I diagnosed plantar fasciitis. It went away after a couple of months. I was BEGINNING to think there might be some connection between these mysterious pains that all seemed to start on awakening.

    THEN PODAGRA, the death attack to the bunion joint of my left big toe. Big hot purple untouchable mess that I couldn’t even touch with a sheet. Only then I knew what all the earlier pains over the last two years were…GOUT!

    (I suffered for 9 days until I called my doctor (not  a chance in Hell of getting to see him) and he called in the colchicine. I took 22 and the pain stopped 45 minutes later…(HINT, NEVER TAKE 22 colchicine.) When the pain stopped I went to my doctor and ran my uric acid…like 8. Something and I went on allopurinlol 300 mg for the next 20 years.

    So to apply this to you, it is possible that you will not get a definitive diagnosis til you get THE TOE FROM HELL that even doctors in the 1st Century could recognize as gout. With THE TOE gout is an easy call, WITHOUT THE TOE it’s often a dicey call. But in truth, with gout PODAGRA is eventually inevitable.

    I will say though that if you see a couple more 5.9 UA readings, gout is not likely…


    Allopurinol Tablets 100 mg photo
    Allopurinlol = Allopurinol
    #5146
    Tavery
    Participant

    One comment about the 5.9 UA reading…

    This may be a red herring. Dont trust a reading taken in the middle of an attack. Also, it depends on what test is used to get the UA reading. If you have the option, have them take fluid with a needle directly from the joint. That is the most accurate test.

    When they took blood during my first attack it only read 6.5. I am now on Allopurinol.

    #5179
    mathman
    Participant

    1.  The only issue that I have with colchicine is its toxicity … I've heard of people dying from a dose as low as 6.0 mg.  My tablets are in .6 mg form.  16 sounds like it could be a fatal overdose, and I don't want that.  Honestly, with as much as my GP scared me about taking it, I'm kind of afraid to take colchicine …

    2.  Everything's changed in the last two days … I have no problem walking.  The last (minor, but still annoying) pain I have is the middle of my 3rd and 4th toe joint are swollen, red, and painful.  The MTP joints are no longer inflamed, and are not really too stiff (they are a little still).  Can gout “migrate” like this?

    Thanks!

    #5183
    trev
    Participant

    I think Colchicine is a mixed blessing.

    I suspect, if it hadn't already been established years ago, it wouldn't get through modern drug proving trials on safety grounds. A lot of trad. medicines are based on plant toxins like this one.

    If it doesn't drive you off them totally- I read a report that as little as 7 tabs had caused a fatality- but I have still taken  up to 6 as prescribed since knowing its' downside in an unlucky few.

    Just don't go for the quick returns with a high dosage!

    People have died using asprin but it is still used/useful – but not where a body is vulnerable to side effects.

    …  &  Yes!- Gout is a great migrator!

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