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Question for a rheumatologist
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I was diagnosed with ankylosing spondylitis about 15 years ago. Thankfully mine seems to be a mild case.

I have a regular, annual checkup with my rheumatologist. I really like the guy. Only trouble is, he's not an active person and his concerns are focused (understandably) on making sure I'm mobile, not in pain, not fusing, etc. rather than worrying about whether I'm able to train effectively in the context of someone with AS.

So, I'm wondering if there's a rheumatologist on the forum who wouldn't mind answering a couple questions about NSAID use in the context of ankylosing spondylitis and endurance training. I'm happy to ask publicly or via PM depending on whether you'd be willing to chat publicly or privately. I obviously won't hold anyone liable for any information, recommendations, advice, etc. Thanks!
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Re: Question for a rheumatologist [Northy] [ In reply to ]
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I’m not a rheumatologist but I can tell ya, the biggest concern about NSAID use and endurance events is kidney damage. If you plan to use NSAIDS during an Ironman, you just better make sure you stay on top of your hydration. I would tell you this regardless of AS, or not. The AS part does not change the advice for NSAID use (and hydration) during endurance events. This may not be what you are thinking about so sorry if it does not address any concerns
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Re: Question for a rheumatologist [EyeRunMD] [ In reply to ]
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Thanks. I hadn't thought about NSAIDS and hydration/kidney function. I did get pretty dehydrated in my last two IM but I can also blame myself and the weather for that.

My main issue/question has to do with being on diclofenac daily. Not a high dose but 50 mg every night. My rheumatologist is not concerned about long-term diclofenac use and, from his perspective, it's great that my AS is kept calm with an NSAID rather than a biologic.

Then I got my first Pfizer shot last Friday and, per the recommendations, didn't take any NSAIDS for a couple days. Except I've continued without the daily diclofenac throughout the week. I had some back and hip pain for the first couple days but they've been gradually dissipating without medication.

It's making me question whether I should be taking diclofenac daily and I'm also wondering if my long-term NSAID use has been detrimental to my training. I've struggled with several running related injuries over the past year+ and wonder if taking an NSAID daily has slowed the healing process. I also wonder if it's masked pain such that I've kept training whereas without NSAIDS I would've listened to my body and dialed back (also helping with recovery, healing, adaptations, etc.).

And yes, I've scheduled an appointment with my rheumatologist. My worry is that his perspective will simply be "you're managing your AS with just 50 mg/day of diclofenac, that's much less than most of my patients go through, I'd say things are going well! I'd focus on that rather than your triathlon hobby."
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Re: Question for a rheumatologist [Northy] [ In reply to ]
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As someone with AS, I'm really interested in this thread. I have a mild case as well, but I was only diagnosed within the year (but I assumed I was previously based on HLA-B27 and family history).
I was taking Relafen daily which worked great, but I just hated the idea of long-term NSAID usage (this thread in a nutshell).

I have altered my diet significantly and I feel like I've been able to almost completely back-off my Relafen dosage.
It sounds far-fetched that diet can help, but I've read several research papers linking gut bacteria with AS; it was enough for me to try and I think it helps.
Most of the AS-recommended diets were low on carbs, which I didn't want to do and still train competitively.
I loosely follow the IBD-AID diet (https://www.umassmed.edu/nutrition/ibd/) which allows honey and maple syrup; for the most part I'm just trying to avoid added sugars.
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Re: Question for a rheumatologist [Northy] [ In reply to ]
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Just say what you told us. “I’ve been off nsaids for a bit and am doing well.” Just asks if you can resume it if pain becomes an issue.

I would think Most docs don’t mind withdrawing nsaids (AFAIK) if there is no discomfort. Did a quick searchin one of the medical online texts (uptodate.com) and they suggested that it isn’t required in asymptomatic patients.

Good luck.
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