May 23, 2009 at 2:14 pm #2868
Hi my name is Iain and i have had gout since i was 18 years old. I will be 36 this year and it has got as bad as it could be.
It started off as oh there is nothing wrong with you till 5 years ago when i had renal shut down being told i was lucky to be alive. I have been up to 900mg of allopuranol twice now with it making no real difference. I have been on coltrazine which made me really ill, diclofenac and various pain killers. It was the combination of there drugs that gave me renal failure and put me on dialysis. I am pleased to say my kidneys are now back to normal function and i have regular blood tests. My Uric levels are always very high so gout is a very regular thing. I am a member of the UK gout society and have been to NICE as a patient expert for the new drug feboxostat which will be used instead of allopuranol.
4 years ago i lost my job due to gout and have not been able to work since. My gout has worn away my joints and arthritis has started to set in. Its is a misconception that you only get gout in your big toe, as when i tell people that i get it in both ankles, both knees, both elbows and both wrists and even suffer from it in my shins. I have only once had it in my big toe.
I now regularly take prednisolone, oramorph, tramadol, and opiate patches to keep things as pain free as possible.
If you cant work because of this illness you are able to claim benefits so all is not lost.
I have tried all types of things to help with gout and probably a few things some of you have not so if you want a chat please get in touch with me.
May 24, 2009 at 3:56 am #4620Keith Taylor (GoutPal Admin)Participant
Thank you Iain – your post is a powerful reminder of the crippling effects of gout if it is not treated properly.
What absolutely horrifies me is the fact that you have been treated with allopurinol and febuxostat, and your uric acid remained high. I realise that it is too late to prevent joint damage, but surely the doctors can get your uric acid levels below 6mg/dL to prevent further gout flares and more joint damage?
Have you had your urate clearance checked (24 hour pee test)?May 24, 2009 at 10:01 am #4632
The only time my levels cam down below 6 was after i was on dialysis. I have been to the leading experts in this field and we have basicly come to a dead end. It is a case of living with it now. If it is found early you can control it. I have been told that within 10 years i will probably need new knee joints.May 24, 2009 at 11:03 am #4633
Horrible to read what you have gone through.
I also am shocked that 900 mg. allopurinol was not sufficient to bring down your uric acid. Have you ever tried probenecid or one of the other uricosurics. I imagine that with kidney failure always in the picture, these might be overlooked.
Have you been tested for a urinalysis over 24 hours to see exactly how much uric acid you are excreting?
Do you suffer any diagnosable conditions that might casue your uric acid to be so high and so unresponsive? Something like cancer, or kidney disease, NOT caused by the uric acid but CAUSING high uric acid, certain drugs?May 24, 2009 at 3:55 pm #4637
Yes i have been tested for all sorts and all come back as normal. I have done many 24 hour urine tests but counld not tell you what the results are??? Gout has been in my family for 3 generations but never this bad. They tried to put it down to my diet and my size but having done 3 years of food tests it made no differance. I was told if they had of picked it up when i was a lot younger things might have been better for me but no GP in the country could believe someone of 18 could have gout. I have even been a case study for many med students at Oxford. When you think half my life has been spent in pain i sort of treat it as normal now. The good thing is that the incapasity and DLA now take this a lot more serious which is a good thing for others that suffer more. I have done a few news paper and radio interviews about gout and helping make it more well known as a real illness. Its about time as well.
IainMay 25, 2009 at 9:44 pm #4646
Do you have many tophi?
I wouldn't give up on urate control even if you have to do it alone. Starting with an assumption that you make a normal 750 mg. uric acid a day like most people, that's how much you should excrete to be in stasis…more if you want to lower your serum and joint urate level. So you absolutely need that kidney excretion number from your old tests or from a new one. That will detemine if your kidneys are fully functioning and capable of excrreting uric acid. See if you can dig this number out.
The drugs you are taking now will NOT affect your uric acid and are only for pain control…that's not good enough.
Please don't give up if there's another drug to try or another approach to take.
The risk of is that when you need new knees you may also need 2 new kidneys or permanent dialysis. Alas, since you said the only time you got normal uric acid levels was on dialysis, the strong presupposition is that your kidneys are NOT removing enough uric acid…but there ARE drugs that increase uricosuria. Have you tried probenecid or sufinpyrazone?
Have you tried the allopurinol substitute, febuxostat ?May 26, 2009 at 4:03 am #4650
sufinpyrazone? was one of the combination of drugs i was on at the time of my kidneys shutting down. I am waiting on my specialest to sorce febuxostat and we will give it a try.May 27, 2009 at 9:17 am #4658
My best wishes go with you, you're on a tough road.
But don't give up on uric acid control even if it involves a completely vegetarian diet.
Make sure that you remain under the close monitoring of an EXPERT nephrologist; kidney failure is how uric acid kills.July 10, 2009 at 6:47 am #4907vegetarianGuyParticipant
Wimpy I am hoping there is some kind of light at the end of tunnel for you. You have suffered too much!
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