6 months of symptoms and 5 opinions

Stopping Gout Together Forums Help My Gout! The Gout Forum 6 months of symptoms and 5 opinions

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    • #10331
      Owen Taylor
      Participant


      I was diagnosed by my primary care dr without looking at me in October of 2020. Prescribed AP at 300 mg and referred me to a pediatrics that. He was skeptical and took crystal samples from my affected area – not my big toe but more in the middle of my foot. Rheumatologist said it didn’t look like gout but could be. Also could be pseudo gout. Second GP dr saw me and my other very painful swollen foot and said the type of swelling wasn’t typical of gout took me to a different pediatrics to who wrapped it in a medicated cast and said she had heard of low Uris acid level gout sufferers.
      I’ve been on an alkaline increasing diet for 10 days but it included red meat – using an eastern medicine dr. Pain is overwhelmingly back. Uris acid level is at 5.7. Has typically been at 4.8. I have eaten appropriately since October. Colchicine doesn’t work. Any help would be appreciated
      I am 60 and 35 lbs overweight.medicated for blood pressure. Thanks

    • #10332
      nobody
      Participant

      Hi! I’m sorry but you need to explain yourself better.
      When was your uric acid tested and what were the exact results (numbers come with a unit)? I can’t even tell if the values you’re talking about were obtained while you were on allopurinol (assuming that’s what you mean by “AP”) or not (which makes a world of difference!).
      Likewise colcihcine does not perform miracles. You need to taken enough of it for long enough (and even then, it’s certainly no cure-all). For all I know, you’ve been taking it incorrectly.
      You also don’t say what other drugs you’ve taken.
      Finally I don’t know what you call eating “appropriately” but since you mention red meat, you may not know how gout sufferers should eat.

    • #10333
      Owen Taylor
      Participant

      Thanks, I’ll do better: Uric acid was 4.5 (blood test has 4.0-8.0 mg/dl after it)after starting Alupurinol late October. I have not been free of symptoms since then. My left big toe was severely affected for November 15-17. Other than that it has been varying degrees of discomfort back and forth on both feet but not the traditional big toe.

      Alupurinol prescription is 300 mg once daily. Colchicine is .6mg twice then .6 once one hour later and repeat if needed three days later. I verified twice with my dr (who thought it would bring near immediate relief.)

      My diet has been alcohol free with the exception of 2 days when I had, nervously, 3 glasses of red wine (60th bday and New Years) my wife is helping me only eat gout friendly food off of this site and the Mayo Clinic. 2 weeks ago, depreseed and frustrated I met with a dr who has left conventional medicine primarily to treat cancer patients but agreed to see me. Her plan involves lots of shade veggies, sweet potato, avocado, and oddly red meat. I had 8 ounces a day of beef Sunday through Thursday. Yesterday my right foot started hurting. Today is the worst ever.

      Of 4 people who have seen me only one thought it was traditional gout. One said to see a specialist who I saw and he looked at the scrapping from the joint and wasn’t sure.

      I think it ought to be gout but since my uric acid is low drs are inclined to think it is something else. My once a month lab test has matched with my daily home meter test in the 4.6-4.8 range until this past Thursday when it jumped on my home test to 5.7. I have very little swelling. When I did it was soft and not red. My sed rate is 9 by “modified westergreen” and I a, told that is a measurement of inflammation and should be below 20.

      I am pretty pain tolerant. Needed no opioids with a knee replacement and now on occasion at night I need a half of a 10-325 hydrocodone. I have good days then bad days at random. I haven’t ever been normal since September. The alternative medicine specialist thinks it is a fungus but got that off questioning me and taking a toothbrush so I am not very comfortable with the diagnosis. I hope that is more clear. Thanks for reaching out.

    • #10334
      nobody
      Participant

      I’m getting a clearer picture, and I can make a few guesses as to what went wrong. The information you gave is still patchy so I may be on the wrong track. Let me know if I guessed wrong!
      It seems like you (and at least some of your health care providers) haven’t understood a few key facts:
      -allopurinol often takes more than a few months to work so, even if the gout diagnosis was correct, it’s no great surprise your troubles haven’t gone away
      -for the same reason, if someone’s uric acid numbers are low on allopurinol, it doesn’t mean they don’t have gout but that allpurinol is working
      -if you tested 4.5 on 300mg allopurinol per day, chances are your uric acid was easily high enough for you to develop gout before you took allopurinol (but it would be best if you could get your hands on pre-allopurinol test results to make sure)
      -as long as you keep taking 300mg allopurinol per day, what you eat probably won’t matter much as long as you avoid alcohol, diuretic additives and the very worst foodstuffs like single-celled organisms (yeast, spirulina and so forth) and some very small animals
      -the drugs that provide relatively quick relief are called anti-inflammatories (non-steroidal or steroids, both kinds work as long as you take a strong enough dose) and you surprisingly didn’t mention any… if you really didn’t try common anti-inflammatories yet, discuss the matter of the maximum dose you could possibly take over a short amount of time to kill a gout flare with a doctor as soon as possible!
      -colchicine doesn’t provide immediate relief but is taken every day to prevent flares or help them cool down (either way you need to take more than 1.8mg pills over time… but of course you musn’t take more than 1.2mg in one go! this is an unusually dangerous drug so be careful and do not take more than is written on the box unless a doctor tells you to)
      -opiods work to relieve the pain obviously and allow people to sleep during a gout flare if they can’t take anti-inflammatories for instance but do not get at the cause or prevent damage due to inflammation so aren’t a solution

      It could be that red meat is a problem because of its heme iron content (that depends in part on how much iron there was in your system to begin with) but, although I would avoid all animal flesh as well as mushrooms in your situation out of an abundance of caution, I wouldn’t blame the red meat for this flare when it could easily be a coincidence.

      I would also be uncomfortable about the fungus thing unless there is test actually showing the presence of fungus in your body (which is a thing that can happen).
      I obviously can’t tell if you have gout or something else and can only recommend you agree to more tests if a doctor recommends any but since you are already taking allopurinol, you might as well behave as if you had gout as long as a different cause isn’t proven. If you have gout, your troubles should go away if you stick to allopurinol. If you were to doubt you have gout then, you’d always be able to quit allopurinol to see if your symptoms came back (it usually takes a while).

    • #10335
      Owen Taylor
      Participant

      Thank You! I obviously need a medical professional who knows more. I have not taken common anti inflammatories because I didn’t ever need them before and had the blood test that said I had little inflammation… I really, really appreciate you taking the time to respond. It helps a lot.

      Owen

      • #10337
        Keith Taylor
        Participant

        I obviously need a medical professional who knows more.

        It saddens me to see such poor quality of care in this day and age. Because professional guidance has been available to front line doctors for at least 10 years. But far too many of them simply ignore best practice.

        For example, the starting dose of allopurinol must be 50 – 100 mg. Then increased every 2 to 6 weeks until uric acid is safe. “Safe” is debatable but without any debate, gout patients are lost.

        There are other apparent mistakes in your treatment. So I guess my question is “can you find a rheumatologist who has gout experience and who has adapted treatment procedures to reflect the current guidance?”

        If not, we’ll have to train whatever doctors you are stuck with.

      • #10338
        Owen Taylor
        Participant

        I am fortunate not to be stuck with any particular doctor or medical group. It is why I have seen two GPs and two podiatrists. The rheumatologist was scheduled so far out I was desperate to make some headway. It was disappointing to have a rheumatologist tell me he couldn’t determine if they were uric acid or Pseudo gout related crystals/deposits on the lab report. We are desperately short of medical professionals in the US and I don’t see change coming anytime soon.

        With this help I feel significantly more optimistic than I have in quite a while.

    • #10336
      nobody
      Participant

      I was editing my post to add a few points when I saw your reply so let me add this in a separate post: some blood pressure drugs can trigger gout so make sure a knowledgable doctor has looked at your prescriptions and ascertained you’re not taking the wrong blood pressure drug for someone prone to gout.

    • #10339
      Rhys Ludlow
      Participant

      I had really severe pain a few years ago, it took several months for the pain to subside (I assume that as the uric acid was released from my body, the gout actually felt worse) eventually with the allopurinol and a mostly vegetarian diet ( I do not worry about acid-forming veggies – but I don’t eat a lot of any one thing), my gout went away.

      I will say that the only thing that helped the pain (almost immediately) was cannabis. Which I see as a safer route than opioids so long as you don’t make a habit of it. Also evidence is emerging it may be a bad idea for those with heart disease. But it absolutely took the pain away.

      For the past year, I have been indulging in the occasional beer or sardine with no noticeable effects.

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