July 10, 2019 at 1:49 pm #9015
I was diagnosed 4 months ago with gout,one attack and my Doctor put me on Allopurinol and Cholchicine. I broke out in hives and was immediately taken off Allopurinol. I will not use febuxostat due to the recent “black box heart warning”. What is left for me to take? I am an older female and do not fall into the usual category of gout sufferers. Does anyone have any advice?
July 10, 2019 at 6:19 pm #9016
I’m going to answer both your posts here.
I’ve been aware of the issue with cardiovascular deaths linked to febuxostat long before this hoopla. I don’t know exactly what’s going on but I don’t think you should rule out febuxostat simply because it’s got a black box. Your risk factors would need to be considered in light of the available data.
One thing I do know is that febuxostat is often used incorrectly, even by doctors who are suffering from gout themselves. Unfortunately, finding a doctor who understands gout and related issues can be very difficult. Should you manage to find a doctor you trust and who knows what they’re doing, simply ask them what (if anything) you should take.
If on the other hand you want to become your own doctor, the first questions you need to ask are:
-what did you hope to achieve with allopurinol or febuxostat? The main effect of these drugs is to lower the amount of uric acid in your blood. And no one can give you sensible advice about how to achieve that without knowing how much there is in your blood in the first place (or what you’d like that number to be).
-did you get hives because of allopurinol or was that a coincidence? Did you try to take colchicine on its own after these hives went away for instance?
July 11, 2019 at 12:21 am #9017
When I was diagnosed in April, my ua was 7.6. I was placed on both allopurinol and colchicine and my ua went to 6.0. then I developed hives and was told to stop the allopurinol but not the colchicine. Now my ua is 7 8 but no hives I have a history of ventricular tach, kidney stones, GERD and am boarder line anemic. Reading the warnings for uliric and probenecid scare me.
July 11, 2019 at 10:30 am #9018
How long were you on how much allopurinol per day before that 6.0 result?
And are these three measurements are the only ones you’ve got?
I assume you have since then stopped taking colchicine. Side effects can become serious over time.
There are no official warnings for not taking drugs but obviously it doesn’t mean failing to treat a disease is necessarily safe.
In particular, I’m concerned about these kidney stones. I’m not knowledgeable about kidney problems but I know some people take allopurinol or febuxostat for kidney stones because uric acid is one of the things which can form stones. Taking too much of these drugs can in principle also result in kidney stones (composed of xanthine). Young people would normally not get kidney stones from uric acid when it tests under 8 but even though your values aren’t very high, possibly the condition of your kidneys might make values as low as yours dangerous. So a diet designed to lower uric acid and help with its excretion could contribute to protecting your kidneys. You would probably also benefit from taking some drug but the simple drug-only approach may not best in your situation. You may also benefit from taking smaller drug doses than most people.
Have you ever seen a doctor knowledgeable about kidney issues and did you discuss uric acid with them? Or have you read the medical reports about your kidneys and the composition of your kidney stones and researched these issues yourself? Obviously there’s a lot more to kidney function than whether or not you have a history of kidney stones…
There are a few other drugs than the ones you’re listed as well as other compounds sold as medicine in some countries or simply found in foods which could help with your uric acid problem but you’d have to be careful about their effect on your kidneys in particular.
Sometimes serious drugs are best in spite of their side effects if one uses them carefully because one may only need a very small amount in comparison to less specific or less effective medicines.
About febuxostat and your history of tachycardia, there’d be another balance to strike regarding the risks but I think your kidneys ought to be considered first and I lack the knowledge or experience to help you with that. If it turns out your kidneys would benefit from a drug and/or diet which happens to alleviate your uric acid problem as a side effect, there might be no need for you to try febuxostat or allopurinol desensitization.
July 11, 2019 at 4:45 pm #9019
Just saw Rheumatologist. Since I am allergic to Allopurinol and have a heart problem, he will not put me on Febuxostat. Probenecid causes Kidney Stones so he rulled that out. I am now on my own!! Do you know of an effective otc supplement that gets rid of ua (along with diet)? I don’t know what else to do.
July 11, 2019 at 8:01 pm #9020
Finding a good doctor would be the ideal course of action.
A rheuma isn’t a kindey specialist and no responsible doctor would use bullshit excuses to get rid of problem patients and let them fend for themselves.
I must have seen about a dozen doctors over the years. Most were useless and some were dangerous quacks. And I still had to do some of the work myself or I might have ended up without a solution. So don’t give up after the first couple of doctors.
Supplements can be even more dangerous than drugs. People promote many quick fixes to the desperate online. The best of these are useless but harmless.
I wouldn’t even dare to recommend a diet based on the very limited information you have shared so far. I have no idea what your current diet looks like or if it changed since the UA tests you shared. Worse, I don’t know if you have health problems requiring a special diet. What if you have a cholesterol problem affecting your tachycardia instance? A diet which would be fine for someone else could easily be more dangerous than febuxostat for you.
If you can’t find a decent doctor, you’ll have to research the issues slowly and methodically. Question everything. Gout isn’t going to kill you anytime soon so you can afford to take your sweet time. Preventing worse kidney problems might be more urgent which is one more reason I’d start by looking into these kidney stones and your kidney function more generally.
There’s one bit of advice I think I can give right now because so far as I know it is pretty safe: make sure you drink the generally recommended amount of water and avoid any diuretics (including alcohol) unless a doctor told you it was important you take a diuretic drug (in that case, ask the doctor if there is an alternative).
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