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I think it’s also quite interesting that your doctor told you that if you got your UA level below 5 is when it would start to dissolve crystals in the joints. Did your rheumatologist agree with that assessment too? I have been researching if 5 is the threshold that everyone needs to try to get to or if 6 and under can work in regards to debulking for others too.
Did you have any symptoms associated with the old crystals dissolving at all during the time when your UA number went down from 6.7 to 4.8? Either way I think you did a great job catching and jumping on top of this early which is why you’re doing well and looking towards the end of the road now and feeling a bit disappointed with what you heard. You shouldn’t be. If you can consistently stay at 5 and under for a good 6 months to a year and manage to confirm with DECT imaging (easier said than done) that those crystals have mostly dissolved, then there’s no reason you can’t try to stop the allopurinol with your doctor’s careful supervision coupled with frequent UA testing to make sure it’s staying within the threshold. Now whether this manages to work for you or not is something that you’ll have to see as the results have been anecdotal at best from what I’ve seen during my research to get any firm conclusion.
I think it’s worth trying. Worst that could happen is if it doesn’t work and your UA number starts going back up you’ll just have to quickly get back on the allopurinol to get back within range with the knowledge that you tried everything to make it work.
I actually did not know if I had gout or maybe pseudo-gout for sure until yesterday. My results from a past ER visit where they completed a joint aspiration were “misplaced” at the time. They were finally able to provide it to me just yesterday.
The pathologist report states:
“(Crystals, Synovial Fluid, Pathology Review)
Crystals present demonstrating negative birefringence, most consistent with urate crystals”I ironically actually went and got another joint aspiration done at a different location the day before Thursday because I wasn’t sure if the ER would ever locate the results. They did so a day later but either way once I get the results from the latest one sometime next week and if that matches the above report as expected, I can without a shadow of a doubt move forward with my treatment plan.
Next step- finding a physician that would be willing to work with me on getting the 2 urine excretion tests done before I start taking allopurinol.
I know I’m being somewhat overly cautious here but I truly believe that if I’m starting a lifetime medication, I should do so knowing the complete picture before just diving straight into it. Plus I’m not going to lie- it scares the the crap out of me but each day gives me more confidence that I will someday come out the other side all the better for it.
Hello,
Just wanted to post an update. The new Rhumetologist appointment went horribly wrong. It’s one of those practices with lots of doctors that have a large foot traffic and ended up waiting as twice as long as the actual time I spent briefly with a PA followed by the doctor. I was so rushed that when the PA blurted out that they were so far behind while I was speaking, I almost walked out of there at that point. They wanted to order x-rays that they wanted to do right there to eliminate “some other things” which I declined. I obviously and sadly didn’t even get the chance to bring up urine excretion. They at least ordered SUA test along with a kidney/ liver workup and prednisone for my current flare so that there I guess was only silver lining. I’ve already started looking for a new doctor.
I guess I’ll be like Keith and other people here before I find a doctor that suits me. I’ve found it hard in general finding even non specialty decent doctors here in Arizona.
Quick question and a bit off topic: Can you explain to me why 5mg/ dL is the targeted SUA level by everyone here and not 6? All my research online and everywhere else including most medical professionals target the higher number. I only bring it up because the useless doctor I saw and during the rare time I could speak, asked about this and she replied that 5 is a level targeted only for people with tophi and extremely resistant to most treatments.
Wow. Thank You for that clear and concise explanation. Google couldn’t come anywhere close to answering my question and was even more confusing to say the least. I will definitely try to convince my doctor now to order this test for me before starting allopurinol.
I will definitely now request my doctor for a 24 hour test to be conducted twice once my current flare stabilizes and goes away. The first one on a regular day without any exercising for at least 24 hours prior. The second one a few days or a week later after exercising. Now for this second one should I collect the urine within a set number of hours right after exercising? If so how many? And how quickly should I turn it in to the lab after collecting it or do I have a buffer for the urine to sit uncollected until I can turn it in say the next day?
But it makes sense to do the excretion tests (along with blood tests) before starting any drug if thatโs possible. The doctor might not want to bother with this but even if allopurinol is all you need, the information may be useful to decide on a dose or in determining if you would benefit from other drugs as you get older.
Can you explain to me what the results for this test could potentially tell me that would be anything different from a SUA test? The more I know the better I can justify it if asked why by the doctor whom I’ll see tomorrow. ๐
Thanks!
Thank You! I think I’ve misunderstood how this urine excretion stuff works in regards to strenuous exercising so let me backtrack.
I wanted to know if there’s anything I need to be aware of regarding strenuous exercising at the start of taking allopurinol for the first time and once I get into the debulking stage. How should I proceed? Should I even get a urine excretion test? Should I just refrain from exercising at all until I pass the debulking stage and not worry about the urine excretion test to make it easier although I prefer not to?
I plan on taking allopurinol everyday for the long term but I wanted to get an idea of how to incorporate my usual strenuous exercising once I start the medication and for the long term moving forward after that.
Thank You!