July 6, 2020 at 6:57 am #9867ZeroParticipant
I’m hoping to get some help with what I have been experiencing. I’ve been to 4/5 doctors now without many real answers other than “it’s gout”!
I’m 40, I have had gout for about 4 years, mostly knee/ankle/foot flares. After my first few flares I got diagnosed and prescribed Allopurinol, I watched my diet and ended up going over a year without a flare. I had a few the next year, mostly in my knees, and then last year in November 2019 I ran a 1/2 marathon trail race, I did well but developed what I thought was a gout flare in my right knee the next day, it wasn’t as piercing as normal but was definitely gout, just more numbing Pain as opposed to piercing. Long story short it hasn’t fully gone away yet, my left knee followed a couple of months later but is not as bad, so now I live with two numbing gouty knees. I can walk without much pain, but I can’t run at all, stairs hurt and squatting down to tie my shoe is ungodly painful.
I take my UA levels daily at home, I’m usually in the 3.5-6 area. I switched from running to cycling due to this and now I cycle 150 miles a week and surf regularly. Mostly vegetarian, occasional drinker, take Allopurinol daily. Testing daily tart cherry and celery seed extracts also.
I’m very active, and I have taken long breaks in hopes of helping but my knees feel better with more exercise, so I continue and try not to let it affect my moods. I keep working on my UA levels, hoping I will figure out the right combo.
I’ve had doctors scratch their heads in front of me. I’ve had x-rays with nothing out of the ordinary according to the doctor. Last 2 doctors have told they have no reason to think there is actual joint damage, which is my greatest fear. But at this point I can’t see it not being permanently damaged. Really not sure what to do at this point.
I’d be grateful for any advice or recommendations.
July 6, 2020 at 8:42 am #9868nobodyParticipant
It’s strange you’ve seen so many doctors about a knee issue and all you got out of it was x-rays. I hope they’ve run more tests on your bloodwork at least to rule out infections, other joint diseases and stuff.
I also don’t understand they blame gout if your UA has been good for a long time. But maybe your home tester is off… what have the lab results said during the years you’ve been on allopurinol?
Sorry but assuming your UA levels have been reliably good and UA crystals have not been found in your knees, I’ve got no recommendations except spending a lot more on tests and doctors to learn what’s going on in your knees. But that might be a waste if you simply require more rest (based on how active you are, I suspect your “long breaks” might not have been very long or very restful).
July 6, 2020 at 9:43 am #9869Keith TaylorParticipant
Welcome, and let’s hope we can get this sorted fairly soon.
Firstly, I second everything nobody has written.
My first thought when I read your message was a feeling of concern about your uric acid test results. Because without reliable results, you will never get a straight answer. Anyway I hope some of my experiences are relevant to you.
- Home uric acid test kits. The real problem here is accurate blood sampling. Because a finger prick is drawing blood from capillaries. And that’s notoriously unreliable. I believe they have a place if you are very meticulous. So please don’t take this the wrong way. But “I take my UA levels daily at home, I’m usually in the 3.5-6 area.” is a sure sign to me that you are not meticulous enough. If you’ve kept a daily log, please post it. More importantly, do you have any lab tests to corroborate home test data?
- Gout recovery starts when you have gone six months without a gout flare with uric acid never higher than your safe target. Safe targets are controversial among gout doctors. Some aim for below 5 mg/dL. Others aim for below 6 mg/dL. But most primary care physicians don’t know what a safe uric acid target is – or what to do with it.
From your description, I can’t tell if you have started gout recovery and relapsed for some reason. Or if you are still in the early stages of dose adjustment to reach target.
As far as what to do next is concerned, I can’t really offer an opinion at this stage. Because analyzing data on your uric acid levels matched with allopurinol dose changes would be my first step. Generally speaking, it’s a bad thing to stress joints that are weakened by uric acid crystals. So I would consult a professional trainer in your situation. Then when your recovery starts (as per my point 2 above) you can gradually increase exercise intensity. The good news on that point is that studies I have seen indicated that joints damaged by uric acid crystals tend to recover once uric acid is made safe. Sorry that’s a bit vague – I’ll research deeper if you wish.
July 6, 2020 at 2:39 pm #9871ZeroParticipant
Thanks for both responses, appreciated. This has been a slow learning process and I should definitely clarify a few things.
After my original diagnosis I was prescribed 300mg allopurinol, it was so effective and followed by over a year of zero gout, it kinda felt like a non issue in my life. When it started to creep back, i would jump into action and drink a couple bottles of tart cherry juice and tons of water and it would taper off within a few days, so it was pretty manageable. I never brought this back to a doctor until January 2020 after the post race gout flare was stubbornly sticking around. By then I had changed insurance and saw an urgent care Doctor a few times before getting the doctor I have seen once as of now. The urgent care doctor did my last xrays, in part because he thought it was a tear and not gout. After seeing my New doctor for the first time she said it’s absolutely gout and gave me prednisone which helped briefly at the time. I’ve only seen her once as of now.
In addition to the doctors I’ve also participated in a topical gout cream study for 3 months right before Covid started, mostly because they did my bloodwork twice a month and I was really curious (this lead to me getting a UAsure device for home use). The study results were so-so only, and the nurse that did my bloodwork was not a specialist and only once got UA over 7, she was almost excited when she finally got a high one, she always told me that all her other patients were serious and she saw 10s regularly. Judging from that I feel like the UAsure device is in the right neighborhood, as I’m very clean and careful with my testing. Most of my readings come out 4-6 for the last month. When I get a reading above or below I go for another test and it lands 4-6 again.
I haven’t really been to any specialists with all this info, which I understand is a problem. Having worked out through many nagging issues in the past not related to gout, there’s really always something so you push through and it always feels better for a bit after a workout.
What Kieth said about recovery was interesting, 6 months no flares. I have not had a “typical“ gout flare in well over 6 months, nothing in the foot or ankles just the nagging knees. Interesting note that when I do drink Alcohol and eat junky, which is not often, the knee pain sometimes can get much worse, very swollen and pain spreads down my back calf, but then goes back to normal pain after a day of clean eating. So I know it’s clearly affected by going off my diet.
I am making an appointment to see my doctor this week, should I ask to just see a specialist? Would that be a rheumatologist? What else can I ask for to get real information? How would I get a test for UA crystals In my knees?
July 6, 2020 at 8:52 pm #9873nobodyParticipant
Symptoms aren’t a reliable guide unless you take a very long view. Gout attacks can go away for many months without treatment so many become convinced by the efficacy of weird cures and rituals.
So I must insist: what you most need to know is the results of your lab tests over the years.
I’ve seen a specialist for a knee problem once (most likely a gout-related injury) and I can’t remember the name of the specialty but most of his clients were seriously into sports. Seeing a rheuma might make more sense considering the pain seems to be affected by your diet.
Crystals can be inferred based on MRI or ultrasound imagery and conclusively detected by DECT (rarely available) or joint fluid tests (but I don’t know if getting fluid from the knee is practical). There may be other ways.
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