Gout in both feet/toes/ankles

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Hello all,

Been suffering with gout on and off for 20 years. Male in my early fifties now and keep myself in great condition. Lift weights and keep my muscles in top shape. Eat fairly healthy and avoid a lot of purine-rich foods. Don't drink any alcohol ever.

I do have stage 2 liver disease, stage 3 kidney diseasel, and high blood pressure. My nephrologist has advised me not to take any NSAIDS. I can't take colchicine even the slightest makes me sick and is not good for the organs anyhow. Forget indocin...I almost went to the ER after taking it because my heart started racing, couldn't catch my breath, and I generally felt like was going to go into cardiac arrest. Do to my other health issues, taking Allipurinol or the like to mitigate further attacks is out of the question.

I've been in shear agony for 10 days. Started in my right great toe, then the left great toe, the left ankle, and now it's in all of those and the second last toe on the right foot. I'm so p*ssed and depressed, I can't even put it into words. No sleep, can't work, in constant pain with no medication to help me. I can't put any pressure on the joints without excruciating pain and I'm crawling around the house. I'm literally out of my mind with this crap. 

I guess this is more of a rant than anything and I appreciate you reading it.

sabre

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  • Posted

    !976 aged 36 I was telephoned by my younger brother. I asked why he was at hgoem and told me he was off with gout. I exploded in laughter. Three days later as I went ot change the TV channel; no remotes in those days: I had the most excruciating pain in my ankle. Doctor told me it was gout! Excrucuating pain; couldn't satnd the shheets on my toe. No further problems until 1995 and then another violen attack; couldn't even get a show on and had to have doctor visit. Since thne it has been fairly regular. I was given various medications that disn't work and then in 2013 after havigf a very severe attack that had started early in April, I went ot the quack once more. For months my large toe had gone from red to black and back to crimson again, with various hues of blue and yellow in between. My wife thought I'd get gangrene. Doctor put me on Omeprazole and Indometecin. Within 2 dfays I was pain free, althogh the Omeprazole di seem to affect my stomach. At the same tiem i heard about celery seed extract. The best seemed to be supplied by Puritann's Pride. Terrible delivery at times, but hey if it works why worry? I was actually telling everybody I#'d cracked it. If I had anything approcahing serious i just popped gthe pills and usually within 24 hours I was as right as rain. Last Sepptember we were on holiday in spain and I was gettnig a few pains; lumpy toes! I put it down to the fact that I was rationing my celery tabs due to a delivery not arriving before we departed. Arrived hom,e; resumed the celery tabs; al lwas fine. Then in April we were on holiday again and I had the self same problem, as also was my wife asnd we thougth we'd identified it as being causd by the odd cana of beer we had sometimnes in the afternoon. the pain was not serious; but continual. Arriving home it got worse so I statred popping he Omeprazole and Indometacin again. Now it didn't work. We eat very sensibly as I've always maintained "you are what you eat". I do have a couple of glasses of wine. I'm 5' 9" and weigh just under 12 stone; could lose a pound or so, but not in any way fat. Havinfg roamed rthe web for years, i realise that this disease is untreatable. For those of us who suffer; our only remedy is topt and water. Vegetarian non drinkers.  We are treated by some in the medical profession as malingerers or self harmers, and no doctor has an idea what to do. We are the forgotten army. 

    David

     

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    • Posted

      Thanks David that's very helpful. I will try the celery extract. I've done absolutely everything to get rid of this gout/arthritis thingy. Stopped alcahole

      Everything.. I'm not overweight and keep fit, was playing tennis twice a week, walk everyday. So I am at a loss. As you say doctors appear to not have a clue!!!

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    • Posted

      Thank you for the information, David. I'm still crippled here. Typically, I can hobble about if in the toes, but the ankle is a different situation. I can't put any weight on it at all so I'm crawling around like a dog.

      I'm about the same size as you and watch my diet. I'm well aware of the high purine foods and beer and stay away from all of that. This last attack could have been triggered by some overindulgence with respect to some BBQ ribs, coupled with a bit of dehydration.

      People who've not had gout don't know what we go through, doctors included. I don't care how you can describe it, it never does it justice. Although the best description I've read is, "feels like someone hit you in the toe with sledge hammer and then took a blow torch to it."

      Since trauma is another known trigger, we always need to protect the affected joints as much as possible. I've gotten attacks after a stubbed toe, for example. 

      So, do you recommend the celery seed extract or do you think it isn't really helping in the big picture?

      Thank you

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  • Posted

    Wow, sounds awful. Have you tried black cherry juice, this seems to help at least to alleviate some of the symptoms until  you find something else? I forgot about celery seeds. Will have to get some. Luckily, my gout is under control with cherry juice that I take just before I feel it coming on. It's okay to rant, I know the pain is horrible but I hope you buy something to get some relief.
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    • Posted

      I get the concentrate, but if you look at the Potassium content on cherry juice/concentrate, it's very high. Due to my kidney issues (and medication used for BP), I cannot have that much potassium for risk of health issues, including having a heart attack!

      Regardless, it just never helped me anyhow. The only thing that knocked this down in the past was steroids. And of course, those are on the list of meds I'm not supposed to take (nor do I want to take). 

      Wouldn't mind a strong narcotic to get me through the tough nights, but this lying around is not for me. I'm way too active...

      Thank you

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  • Posted

    I have the same issue except I'm restricted to what I can take as I'm on warfarin. My foot is still inflamed.

    I have a 2nd lot of antibiotics, hoping these work as it's doing my head in!!!

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    • Posted

      I feel for you, murray. I hope they work.

      I'm still crawling about like a dog. I have rugburns on both knees. And if I am in a seated position for 5 minutes, my toes turn red, blue, purple with yellow circles, and every other ugly color you can imagine. 

      Keep the faith.

      I took a couple Xanax from a family member the other night to help me sleep.

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  • Posted

    Update:

    Still have residual pain in the affected toes that inhibit my ability to stand for very long or walk without hobbling. This is a month and a half in the making. Have not seen a doctor...yet. Been taking Bromelain tablets  twice a day for a week.

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  • Posted

    Did you discuss a corticosteroid like prednisolone for your gout pain with your doctor ? Despite your kidney; liver and blood pressure problems, might it be OK in small doses ?  If you could take it, it should work for your pain.
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    • Posted

      Hi John,

      Initially, he said no to the corticosteroid because my BP was out of control. It has since been controlled with medication and when (if, optimistically) I have another attack, I will ask again.

      I had taken corticosteroids in the past, before the kidney/BP/liver manifested, and they were like wonder drugs. The pain was gone in 24 hours.

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    • Posted

      I think you could also try the interleukin blockers (IL-1B). These are - Canakinumab 150 mg for one dose (available in Europe but not sure about the U.S, Aus, NZ, don't know where you are); Triamcinalone 40 mg one dose; ( not as good as Canakinumab i read); Rilonacept 320 mg one dose; Anakinra 100 mg one dose. Canakinumab is for patients who can't take colchicine, NSAIDs like indomethacin,naproxen, and the corticosteroids. They are all for reducing pain and ending flares, like colchicine.  There is a risk of sepsis for those who take these IL-1 blockers. Ask your doctor about them I'd suggest if you have not. already. All the best. John.

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    • Posted

      One more point. Corticotrophin (ACTH) may be used as an immediate treatment. Corticotrophin stimulates your body to produce corticosteroids. It may be beneficial for elderly patients, who can't take the steroids. So if your dcotor said you can't take corticosteroids, you could ask him about this one.

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    • Posted

      And my last one I think ! Krystexxa (pegloticase) is for serious gout cases like yours, and it can bypass other complications. This one is very expensive - a course of Krystexxa ( they are fortnightly infusions) costs U$50,000-$60,000 over about 6 months so most people would need an insurance policy or government funding to pay for it. But it does get uric acid down better than any other gout med,(for most sufferers) albeit with probably side effects. Look it up with the keywords - krystexxa for gout. good luck sabre0492
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    • Posted

      You should not take it if you have any heart condition and you must NOT have high blood pressure. Yours is controlled now but your doctor will definitely want to know if it is still OK.
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    • Posted

      Did a little research on that..."Krystexxa (pegloticase) is an enzyme that metabolizes uric acid into a harmless chemical that is eliminated from the body in urine."

      Almost sounds to good to be true. But for that cost, it should be a wonder drug.

      Thanks for the info and the well wishes, John.

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