Mystery gout

This topic contains 8 replies, has 3 voices, and was last updated by  Adrian Parsons 6 months ago.

  • Author
    Posts
  • #6667

    Adrian Parsons
    Participant
    Ŧallars: Ŧ 15.56
    GoutPal Historian Badge Rank: Historian


    Hi everyone
    I saw this fantastic website and wondered if I could ask a question please.
    I am a 54 year old man.
    Nearly 6 years ago I went on a low carb. diet and within 8 days developed gout.
    My big toe became painful and the doctor found slightly raised uric acid.
    (A low carb diet meant I had eaten more protein.)
    I had never had any joint pains in my life before this time.
    A scan showed a 5mm kidney stone – Calcium Oxalate Monohydrate which is not gout related – now passed.

    My questions to you are because my symptoms are not mentioned, as far as I am aware, under normal gout descriptions.
    I had migratory joint pains which would travel round my body. One morning my jaw would feel like it had been punched, another day my left elbow. I have not heard of this moving type of pain with gout. Is that normal please?
    Also, I believe gout to be intense attacks for 3-5 few days at a time, whereas I have continuous low level pain day after day. Is that normal?
    I briefly have joint stiffness every morning.

    The doctor gave me Naproxen, and sent me to a rheumatologist who found no signs of rheumatism.
    Now, almost 6 years later, the pains are still low level but not migratory and in 12 joints – quite disconcerting.
    What I am asking is does this fit in with gout or is it something else in your opinion?

    I get a lower level of joint pain, never excruciating but debilitating.
    My feet often feel freezing cold when sitting still.
    A long walk leads to bursitis and burning pain in the ankles.
    All these symptoms came from nothing is my point.
    Also, I don’t drink alcohol or eat organ meats.
    I haven’t seen these generalised symptoms being linked to gout but my toe aches again if I eat meat protein e.g 2-3 times a day.

    I would really appreciate your thoughts.

    Adrian

  • #6668

    nobody
    Participant
    Ŧallars: Ŧ 471.15
    GoutPal Scholar Badge Rank: Scholar

    These symptoms are not typical of gout. You could have low-level pain from gout but the symptoms should be on-and-off rather than constant and you would normally also have the intense bouts. Some people are atypical though. Even so, you should have the most gout pain in the coldest parts of the body (feet, hands are typical).
    You could try more doctors, scans and so forth but as far as gout is concerned a couple of simple and affordable uric acid blood test would provide a clue. Maybe you could also describe what Naproxen does and doesn’t do for you.

    If you haven’t seen a rheumatologist in 6 years and you have chronic pain in many joints, I don’t think it would be excessive to consult a specialist again. Perhaps see another one this time.
    Since you mentionned a calcium deposit I have to wonder: could this be pseudogout or even calcium oxalate crystals in the joints? I don’t know how one would go about diagnozing that other than by drawing joint fluid which is often not a straightforward procedure. Maybe that’s something you could ask a rheumatologist.

  • #6670

    Adrian Parsons
    Participant
    Ŧallars: Ŧ 15.56
    GoutPal Historian Badge Rank: Historian

    Thanks for the answers.
    My uric acid was 8mg.dL in 09/17, it has gone down to mid 3s in the last few months after taking 100mg Allupurinol daily and severity of pain has lessened. I find that my toe starts lightly throbbing if I stop taking Allupiurinol. The rheumatologist found me to be negative to RA in blood tests and said to return to him if I get visible inflammation. I don’t have visible inflammation nor redness and yet knocking on a door makes my knuckles ache and kneeling is tender and can cause bursitis. All quite strange. I would like to try going up to 200mg Allupurinol to see if it helps lessen the pain further but uric acid levels are good now so I am not sure whether to try it or not.

  • #6672

    nobody
    Participant
    Ŧallars: Ŧ 471.15
    GoutPal Scholar Badge Rank: Scholar


    8mg/dl is enough to develop gout but as you probably know, lots of people have that much uric acid without developing gout.
    Since you already started allopurinol, it makes sense to simply stick with it for a while and see what (if any) symptoms persist. In my opinion, the symptoms you described make more sense as gout symptoms in the context of having started allopurinol recently. Having little uric acid in your blood will help keep gouty episodes short, ideally so short that redness and swelling do not develop. Irritating deposits are also known to migrate in the initial phase of therapy. If you’ve had untreated gout for years, gout symptoms could take a long time to go away completely.
    But people who had gout (especially untreated for a long time) are at risk of developing joints problems such as OA. These won’t go away after successful allopurinol treatment unfortunately.

    I wouldn’t recommend increasing you allopurinol dose if 100mg is enough to drop your uric acid to 3.5 mg/dl. Lowering it further could provide a small benefit but you’ll have to wait for allopurinol to do its work anyway.
    I would however recommend verifying that 100mg is indeed enough by getting another blood test if you only had one test returning such a low value after starting allopurinol. If your average result was more like 4.5, increasing your dose would make more sense (but note that you could increase your dose to 150mg rather than 200mg). It would be prudent to get frequent blood tests in the initial phase of allopurinol treatment anyway in order to detect troublesome side effects, especially on the liver and kidneys. If you were to increase your dose, liver and kidney tests would be strongly recommended.

  • #6673

    Adrian Parsons
    Participant
    Ŧallars: Ŧ 15.56
    GoutPal Historian Badge Rank: Historian

    In reply to earlier question, Naproxen is quite effective if I take it before going on a longish walk or going swimming to reduce potential pain.
    Would pseudo gout respond to Allupurinol?
    I suppose uric acid levels would go down if anyone took Allupurinol whether they had gout or not.
    (I note that 33% of people with RA do not have it show up on blood tests.)
    The rheumatologist suggests drawing fluid from the knee joints if they inflame visually or are red in appearance which they are not.
    For these reasons the medical profession are inclined to label it OA which to me seemed absurd as it all started suddenly 8 days after starting a low carb diet and the pain was so migratory at first that ‘wear and tear’ was conceptually ridiculous.
    I can confirm that the last 3 monthly uric acid levels are all around 3.5mg. (My local chemist provides the service at 6 Euros per test.)
    I wondered if 100mg was enough to actually remove crystals from joints as I had understood it to be only a beginner’s dose to see whether one can tolerate it. I will carry on with 100mg then, thank you!
    To be honest, I have a doctor who told me to try Allupurinol only if I had eaten richly that day. As I had never heard of using it ‘as and when’ I decided to take 100mg daily.
    I have not had any liver or kidney tests since starting Allupurinol about 4 months ago but have no allergic reactions.
    Thank you!

  • #6674

    nobody
    Participant
    Ŧallars: Ŧ 471.15
    GoutPal Scholar Badge Rank: Scholar

    I don’t know what process your chemist uses but there are reports of cheap tests underestimating uric acid so I would recommend you get a full blood test (including liver and kindney function) because allopurinol is usually not that effective (meaning that you might indeed need more than the beginning dose if your chemist’s numbers are off).
    I must also stress once more that having at least one liver and kidney function test a month or so after starting allopurinol is strongly recommened. Your doctor is taking chances if they didn’t make sure you got tested at least once.
    Taking allopurinol only when you eat richly makes little sense by the way. The drug stays in your system quite a while (you wouldn’t actually need to take it every day but that makes things easier and smoother).
    What allopurinol needs to get rid of crystals is an adequate dose (how much that is varies quite a bit between individuals) and a lot of patience. After having thoroughly cleansed their system, some people find that they can discontinue allopurinol for a few months or even years before the symptoms come back.

    So far as I know, pseudogout shouldn’t respond to allopurinol.
    Both gout and pseudogout should respond to Naproxen however. Naproxen should be immediately effecive in suppressing any kind of inflammation (assuming the dose is adequate) unlike allopurinol which acts on the root cause of gout.

  • #6675

    Adrian Parsons
    Participant
    Ŧallars: Ŧ 15.56
    GoutPal Historian Badge Rank: Historian

    Thanks for the advice, I will get a liver and kidney test done by my doctor in that case. The problem is I am temporarily living abroad and am not fully registered here.
    All tests are very pricey.
    The chemist uses what looks like a centrifuge-type machine.
    One thing I forgot to mention is that soon after developing mild gout, I developed some kind of auto-immune response. I have had swollen glands in my neck for 2 years now but causes are unknown. (I even developed a hard bony lump above my right ear but it strangely disappeared within a week!)
    The doctor seems a bit unorthodox. Apart from prescribing me Allupurinol ‘as and when,’ he has prescribed me Salazopyrin (which I have not tried by the way) to see if it relieves my symptoms. In which case it would indicate to him that I do have RA.

  • #6677

    Jean Clyne
    Participant
    Ŧallars: Ŧ 42.06
    GoutPal Researcher Badge Rank: Researcher

    Your symptoms sound a bit like me, multiple sites, sometimes mild but still “there”, sometimes in 1 ankle, or maybe the other, various finger joints, big toe, always come and go, always come on with eating meat, especially beef, add sugar to that, then it would start with hot, burning feet, then pins and needles turning into sharp stabbing pains. 2 plus yrs out, turned vegetarian, did 6 mos stint on allopurinol but stopped bec of sideeffects. Finally got apptment with rheumatologist, who said you don’t have big, swollen, red, inflamed joints. Well not now bec I took antiinflammatory especially and changed diet. Osteoarthritis is in all these places, the gout symptoms always went to places of existing osteo. He doesn’t think it is rheumatoid, am waiting for dual ct scan to see if uric acid crystals are there.

  • #6679

    Adrian Parsons
    Participant
    Ŧallars: Ŧ 15.56
    GoutPal Historian Badge Rank: Historian

    Thanks Jean. I also managed to control purine levels with a vegetarian diet but found it hard to stick to it in Italy where vegetarians are seen as almost crazy…
    The problem with the standard medical definition of OA to me is that, if what I have is just OA, it happened so suddenly and was migratory like an entity attacking different parts of my body.
    Please let me know how your scan goes.

You should log in to GoutPal to reply to this topic.


If you do not want to log in, you can post a reply via the orange Gout Help button, or raise a new GoutPal helpdesk ticket.