In the middle of my first attack. Due to other health issues I cannot take steroids or NSAIDS (though in desperation I did take an Advil). Started Friday night and 4 am Saturday I couldn’t take the pain anymore. Hobbled in a sock down a block and a half to my car and drove 20 minutes to ER. Don’t know how I did it! They gave me colchicine though reduced dose. No testing of uric acid, was told it was “classic.” Right big toe, very swollen, shiny red.
Made an appointment with PCP for Wed. and MGH rheumatologist (20 minutes) in two weeks. I need a long term plan, assuming the current flare resolves (still red, swollen, painful at big toe).
My mother and brother had/have gout. I read it is genetic but there is still a prejudice apparently that it is related to drinking. I don’t drink alcohol! But I sure do need to drink more water. And I guess kidney disease can contribute.
I was recently diagnosed with “stocking and glove” neuropathy and am wondering if uric acid crystals could somehow be related to the neuropathy or if it is entirely separate from the gout.
Would love to hear about the experiences of others, what helped, diet, doctors, meds, tests etc.
I’ve had it in my big toe from time to time but it always resolves itself and I usually go years between flares. It’s painful but not enough that I’ve ever sought medical care for it. My mother has it also from time to time - one time her hand was so swollen and red I took her to urgent care thinking it was broken but nope, the nurse basically diagnosed her walking into the room. They gave her whatever the typical drug is and it resolved quickly. Sorry not more help! I don’t notice any patterns in when it flares - I drink very little and my mom was a steady two glasses of wine a day until she went to assisted living. Neither of us eat much red meat. I think in our case it’s probably genetic and at least for me my generally healthy eating, little drinking and fairly regular exercise keep it in check? Who knows.
I know people who got flare ups related to particular foods. One got it when eating too much oatmeal, cut that out and is fine. Another gets it from scallops, stays away from them and is fine.
I know someone who had gout many years ago. They changed their diet quite significantly and it went away. I am pretty sure they switched to a way lower fat content in their diet, but I do not know the details.
Well it is reassuring to read that many of you have large gaps of time between flares, and some don’t even take meds. We’ll see how it goes…Do you test your uric acid levels?
In medical school we were taught that testing uric acid during an actual flare is not accurate because the blood level will often be lower during that time (because some of the uric acid has crystallized in the joint, temporarily lowering the blood level.) But make sure you do get a level at one of your follow up appointments. Then do what you have to do to get your uric acid level below 6mg/dL. Truthfully, most people need to go on a daily uric acid lowering med, especially if the problem is genetic and not due to lifestyle (alcohol, meat etc.)
People often resist going on a daily med for this because they figure they only have a gout attack once a year or even less. So why not just wait for an attack and treat then? The reason is because uric acid usually chooses to crystallize in a joint, but every once in awhile it can choose to crystallize in your heart. This is why heart attacks and other serious vascular events are more common in people with elevated uric acid.
So if you were my family member I would tell you to get your uric acid level measured soon, and then go on something like allopurinol, and get that level under 6. It can take awhile to find the right dose of allopurinol and you have to start low and go up, but it’s worth the trouble to prevent further outbreaks of gout, and of course even more so for heart attacks.
Very helpful thanks. Is two weeks too soon to test levels? I clearly have a genetic tendency and also kidney disease. I am wondering if the neuropathy that has been developing over the last year (“idiopathic stocking and glove neuropathy’) could be related. I also have autoimmune stuff going on. Some mysteries just don’t get solved and I am okay with that, but anything I can do, I will do.
I had 3 natural child births and the pain of this gout flare was up there.
We get attacks of gout on our big toe (H and me) when we have too much lau lau (or taro leaves). If we stay moderate we are fine and it’s years between any attacks. We just don’t over-indulge. We have had some blood tests and they showed our levels are ok. We haven’t been prescribed any Rx and it’s been many many years since last attack.
I have heard of gout from rich food and shellfish, like lobster bisque. Have never heard of it connected to oatmeal! That’s a shocker. We have that regularly and no problems. I guess we are all different.
They prescribed .6mg/day for 3 days in the ER. I discussed doing half of that for first dose so I did 0.3 and 8 hours later 0.3. Next day I did 0.6, very woozy. Today doing 0.3 and later 0.3. Discussed with pharmacist and two doctors. I have seen reference to the loading dose - online- of 1.2mg and .6 an hour later. They didn’t discuss that with me at all in the ER and of course the pharmacist told me I was on a low dose. Might be why this is so slow to resolve. Can’t do steroids. I did do Advil today because I needed pain relief. Supposed to do only Tylenol but not doing the job.
I wonder if a topical like those used for arthritis pain ( Volaren and/or CBD ointment/lotion/balm) might provide relief without as many side effects. Might be worth considering and discussing with providers & pharmacist. Gout pain is miserable but feeling groggy/dizzy isn’t great either.
If you haven’t had any today (or very little) start with the 1.2mg followed by the tab an hour later. And see if that helps. May or may not at this point. Really think you reduced your dose to non-existent/not ever gonna work. But don’t sue me.
Colchicine is a “Classic” treatment which consists of 2 colchicine tabs followed by tabs every so many hours until you got diarrhea. So you took it until the pain stopped or you got side effects. Those directions have been revised over the years for good reason!
PSA: Lots of drug doses can’t be “reduced” especially at the start of treatment. There are drug levels that need to be reached in the body before any effect will be felt. That goes for antibiotics “take two to start”, pain killers that need a higher dose to get you OUT of pain before just maintaining that level etc. If you lower those initial levels by taking lesser doses it just takes you longer to get to the effective level or worse yet you never achieve them.
Yes I have read the protocol and discussed with MD’s. I have stage 3B kidney disease. I have talked to 2 doctors and 2 pharmacists. There is a narrow therapeutic window and I probably have a choice of being over or under it.
From the Guidelines
For patients with chronic kidney disease stage 3 (CKD 3), colchicine dosing should be reduced to 0.3 mg once or twice daily for acute gout flares, with a maximum daily dose of 0.6 mg.
Ideally you wait until you are not in a flare to test, but truthfully I don’t always wait that long. If the blood level is elevated during the attack, I can assume it’s that high or higher at other times. If the level comes back normal, but I still think it was gout, then I have them come back again for a repeat. Another way to be sure is to actually stick a needle into the joint, pull off some of the fluid and send it to be tested for uric acid crystals. They can check the fluid for other rarer types of crystals at the same time. For example pseodo-gout crystals. But understandably, people don’t like a needle being stuck into their joint when they are already in severe pain.
Good question about the uric acid levels and peripheral neuropathy. We know that having high uric acid levels is correlated with increased risk of peripheral neuropathy in diabetics, but it’s unclear whether that is also true of non-diabetics. And of course autoimmune problems are correlated with the development of peripheral neuropathy, so that could also be the reason, as you mention. And then some people get peripheral neuropathy with no risk factors whatsoever other than getting older. I hope yours is not bugging you too much. In some people it’s very troublesome, but in others it stays nice and mild, and I hope that’s the case with you.
A neighbor of mine has occasional flareups. I know I can’t serve him spinach. My brother has it and has reduced his drinking. (Not an alcoholic, but he drank beer regularly.) My Dad had neuropathy in his feet and was tested for gout, but was told it wasn’t gout. They weren’t able to get him to stop drinking. (And he definitely drank too much.)
