Living with Spondyloarthropathy

So, I’ve been sitting on this diagnosis of seronegative spondyloarthritis—or some variation of that whole mess—for years now. Honestly, I haven't been exactly jumping at the chance to undergo intensive treatment, but I finally went to see my immunologist recently, and she dropped a bit of a bombshell: my AST and ALT levels are spiked. We’re looking at 50 and 80, respectively. I’m spiraling a little here, wondering what else could be driving these elevated liver enzymes. What kind of stuff causes that? And specifically, if you're dealing with fibromyalgia, can that also push those numbers up? Is there any actual link between fibro and seronegative spondyloarthritis when it comes to the liver? To be totally blunt—I am freaking out. My mind immediately jumped to hepatitis, and even though I know I’m not exactly in a high-risk group, I’ve read enough to know you can pick that up in ways you wouldn't even expect. Now I’m just stuck in this loop of anxiety about everything. Anyway, does anyone else here deal with elevated enzymes? What other conditions were you dealing with when your numbers climbed? Thanks...

Kyle Diaz28 said:It is exactly as you say. She would look at my charts, palpate my spine, and insist that I needed to exercise—that was the extent of it. She even tried to prescribe five Advils a day, but I just lied and said I was taking them. She even told me that since I am an adult now, I am no longer allowed to see her.

I didn't realize I had problems (or rather, I didn't pay attention to them), but my knee was constantly aching, which is why my doctor referred me to her. It wasn't until I learned about this condition that I started thinking about how I am always in pain. Then again, that is how it works—most of these aches are psychological, so once someone tells you that you're sick, suddenly everything hurts. What do you recommend for when the pain becomes truly unbearable? I don't want to overdo it with medication since I have other health issues and already take various prescriptions daily.

It might be a smart move to seek out a rheumatologist, perhaps at a major hospital like Mayo Clinic; I've heard quite a few people say they were very satisfied there.
A private doctor once mentioned to me that he gives his son Voltaren for intense pain, and it seems to work quite well for him. I suspect most of these medications are somewhat similar (like Lubor, ibuprofen, or Voltaren...), so maybe you could experiment a little to see which one offers you the best relief. As for that doctor you mentioned, you aren't missing anything by staying away from her. She used to push Lubor on my son, but since it didn't help him at all, I stopped giving it to him—which, honestly, made her a bit frustrated with us. We ended up doing most of our testing and therapy privately because she doesn't refer anyone anywhere; she just yells at you to exercise and nothing else.

Was your HLA-B27 positive? If so, that points toward ankylosing

Steven Booth65 said:So, I’ve been dealing with this diagnosis for about five or six years now. It’s a constant cycle—back pain here, back pain there—but mostly, I just feel completely wiped out, weak, and totally drained. There was a stretch where I actually tried to stick to a regular exercise routine, but then I just hit a wall and quit because, honestly, it felt freaking impossible. Right now, I’m seeing an immunologist over at the Mayo Clinic. I can’t tell if she’s actually any good or not, but she’s constantly ordering one new test after another. From what I can gather, my immunology panels have been fine, but my liver enzymes—AST and ALT—are running high. That’s the latest development, and now I have to go down the rabbit hole of investigating why those levels are spiked. I’m low-key terrified it might be a liver issue, though I’m not sure what else could be triggering it. This past month has been absolute hell; the spinal pain is brutal. I don't wake up feeling stiff per se, but I just feel like I've been physically torn apart. I don't have all the "textbook" symptoms, but my tissue typing showed I have that HL... whatever it is, some marker tied to this whole mess. For me, the muscle aches are way worse than the joint pain, and I honestly feel like I’ve got fibromyalgia too, since I check every single box: exhaustion, muscle pain, anxiety, heart palpitations, gut issues... the whole nine yards. I’ve tried talking sense into two different doctors about how this all connects, but nobody takes my suspicions seriously. I guess because they view fibromyalgia as this "minor" thing, they just brush it off. Like, okay, thanks for nothing...😠

Hey there!
Just wanted to jump in here too... I've been on methotrexate and sulfasalazine for years now. Thank God they’re actually working for me and I'm handling them okay. Sure, the side effects from both can be pretty nasty, but honestly? It feels way worse just skipping the meds and dealing with the pain.

bluerider62 said:Hey there!
Just wanted to jump in here too... I've been on methotrexate and sulfasalazine for years now. Thank God they’re actually working for me and I'm handling them okay. Sure, the side effects from both can be pretty nasty, but honestly? It feels way worse just skipping the meds and dealing with the pain.

What kind of side effects have you been dealing with?
I’m actually wondering if a skin rash could be a side effect of these medications; my son developed a rash on his arms, and now everyone in the house is hovering, trying to figure out if it’s from the meds or something else entirely.
Also, do you have to strictly avoid the sun while taking these? And do they give you headaches?
Sorry for hitting you with all these intense questions, but if you know anything at all, it would really help us out. We’re just starting this whole therapy process, and all these changes feel pretty overwhelming right now.
Thanks!

Personally, I think I handle my meds pretty well—no major side effects to report. There was one stretch where I felt super forgetful, though. It was actually kind of awkward because I’d blank on things that happened just minutes prior. I wouldn't lose track of anything huge, but I’d definitely forget casual conversations mid-stream. At first, people thought I was messing with them when I’d ask the same thing twice, but they eventually got used to it. Luckily, it hasn't happened in ages. I'd heard that methotrexate can cause that, so I brought it up with my doctor. She figured that was likely the culprit, but she didn't see any reason to stop the treatment unless it started causing real trouble. (I'm on 10 mg)
I was dealing with some anemia, which probably explains why I was feeling so wiped out all the time, so I had to take iron supplements.
With Decortin, I felt incredibly "puffy." It holds onto fluid, so I ended up looking bloated, especially around my face and jawline. I haven't taken Decortin in about two years now, and everything seems to have leveled out. I'm not sure if it's 100% gone, but I look normal to me again.

I haven't really noticed anything with rashes, but I'll definitely mention it at my next checkup just in case. As for headaches, I don't really get them—well, I get them occasionally, but it's the same as it was before I started medication. I also make sure to stay out of the sun. Honestly, I think the sunlight has more to do with my RA than the meds do.

FFE said:speaking from experience with my own patients

FFE, I need a professional opinion regarding sulfasalazine. Based on your posts, I figured you might actually know something about this.

My husband started taking it a few months ago, and since we’re planning to start trying for a baby soon, I'm worried—how likely is it that he won't be able to conceive? (The side effects mention infertility in men). Also, even if he can, is it even smart to try for a baby while he's on these meds? Could there be any consequences for the baby... 😕

Can someone please tell me how to actually run this specific search;

cryoglobulin qualitative and quantitative

Can someone please help me out? I just got diagnosed with SERONEGATIVE SPONDYLOARTRHOPATHY (HLA-B27+). Does anyone actually know what that means? I'm currently waiting on a call from the Mayo Clinic to come in for a full workup, but they've already listed a few other things on my chart—I won't bore you with all the details—but one of them is Raynaud's with some vasospastic signs... thanks in advance.

Seronegative spondyloarthropathy is actually an umbrella term for a group of conditions—we're talking up to ten different diseases, really—that are mostly autoimmune in nature... I'm not entirely sure which specific one you're dealing with, given that I don't know what your symptoms look like?

Melissa Moore39 said:Seronegative spondyloarthropathy is actually an umbrella term for a group of conditions—we're talking up to ten different diseases, really—that are mostly autoimmune in nature... I'm not entirely sure which specific one you're dealing with, given that I don't know what your symptoms look like?

The pain in my spine is so brutal it actually feels like I'm going to be paralyzed. My knees act up too, swelling all the time, but the spine is the absolute worst... I had a tailbone issue since I was a kid where it didn't fuse right, and now it has, but who knows if it even fused correctly... I'm still so young and this is already destroying me. It just keeps getting worse as I get older...
My brother deals with the exact same spinal issues, and three months ago he ended up in a wheelchair...
My MOM has a similar diagnosis to mine, except hers is seronegative. Honestly, it feels like this is just something we inherited genetically...
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Is anyone actually going to answer? Hello? I’ve been waiting a week for some help here... where did everyone go?

Hey everyone.
Could anyone else living with ankylosing spondylitis tell me what actually works for you at the pool? Is just swimming enough—does it matter if I stick to breaststroke, freestyle, or backstroke—or should I be focusing more on stretching out...
I’ve combed through every single post on this thread, and it’s interesting how everyone seems to be hunting for answers that just don't seem to exist. Especially for those of us carrying that constant, dull ache in our spines and shoulders that this disease provides so generously. Sometimes it feels like we're dealing with some sort of mystery illness, and honestly, I get that same feeling after my appointments with my rheumatologist. Every website I click on online gives me the same vague, more or less detailed text—so theoretically, I "know" what's going on, but then I'm right back at square one.
So, for those of you dealing with this—has the pool actually made a difference for you?👍

Swimming was incredibly helpful for me, though I’ve noticed the pain returning now that I've stopped going. When I was swimming once a week—though more frequent sessions are better—I didn't need any medication at all for a full year. You can swim any stroke you like, provided you don't overexert yourself right out of the gate. My first attempt was so intense I couldn't even get out of bed the next day. Best of luck!

Melissa Moore39 said:granitecanyon2, I know those pains all too well....
Do you deal with any shortness of breath, or maybe find yourself getting winded quickly when you're walking fast or heading up stairs?

Ever since I started taking Medrol and Sulfasalazine, things haven't been quite as unbearable—though, I wouldn't say they're great either—but I still struggle with this constant low-grade fever around 99.5°F, which I just can't seem to pin down for anything for three years now,,,,,,

I’m currently seeing Dr. Anica for my Rib issues, though everyone seems to insist that Dr. Bosnic is the one to go to.

Cheers!
The culprit for that fever could actually be a granuloma. Left alone, dental granulomas
are basically massive breeding grounds for bacteria—stuff that can travel through your bloodstream to distant parts of the body and trigger inflammation in heart valves, joints, kidneys, and other serious organ issues. One big red flag that you might have a granuloma alongside pain is that "unexplained" elevated body temperature. Sometimes you only feel a tiny bit of pain that eventually just fades away, making you think you're fine, but the granuloma is still hanging out there. It can actually act as a trigger that kicks off rheumatic issues. Sadly, a dentist won't catch it during a standard checkup, and it might not even show up on a full panoramic X-ray of all your teeth. You usually only spot them on a specific, targeted X-ray of that one tooth.
Just because none of your teeth hurt right now doesn't mean everything is okay under the surface.
And here's the kicker—something my own dentist never mentioned—even if they treat the granuloma by opening the tooth, cleaning it out, and using those little files (I forget the exact term), that doesn't guarantee it's gone! You really need to wait about six months after the tooth is sealed up and then get a follow-up X-ray to see if the granuloma actually cleared out or if it's still lurking. If it's still there, you're looking at an apicoectomy.
Why am I rambling about this? Well, about four years ago, I had one bad, painful tooth. When I finally went to get it fixed, they found this "tiny little granuloma" that they were sure would clear up with standard treatment. Then, in the summer of 2007, my joint issues started flaring up. By early 2008, we were suspecting arthritis. My specialist immunologist actually requested a consult with my dentist, who *then* suddenly remembered we should probably take another look at that specific tooth (before that, I'd had a panoramic X-ray and was told everything looked perfect). Turns out, there was a granuloma on the tooth! Yeah, it's totally possible it was linked to the arthritis.

It looks like this thread has gone completely silent—I guess everyone finally found their cure and moved on... Please, send me the contact info for whichever specialist you all saw so I can end my own misery too.

Most of the posts here just list medications (the sheer variety is wild—I’d almost call it experimental at this point). Is it really just a matter of finding the right pill for most of you?
Can we actually talk about what life is like living with this condition? Everyone is always preaching about exercise, spa treatments, and whatnot. How are you all actually managing? If swimming is supposed to be so great, why isn't everyone doing it every single day? And why can't we just get some sort of coverage through our insurance for pool access, a group therapist, or something similar?
How are things holding up at work? Do you go in for those various therapies—electrical stimulation, magnets, ultrasound, lasers—and do you actually take sick leave for them? Does the insurance company give you a hard time when you try to get covered for inpatient stays at a wellness center, and how do you deal with that? Which facilities are you using?
I’ve heard people mention connective tissue massage. Does anyone know anything about that, or if there are any specialists practicing in Washington, D.C. or anywhere else in the US? (A chocolate massage didn't exactly do much for me, if you must know...)
Either post something or stay healthy forever. I'm listening...

I’ve been living with this diagnosis for about a decade now. I’ve got that positive RH... I can't even remember the full technical name. Plus, my rheumatoid factor is positive too... honestly, I could probably have any rheumatic disease under the sun, but they’re treating me for seronegative spondyloarthropathy. My first rheumatologist sent me to physical therapy—which was a total bust for me—and then I switched over to an immunologist at the Mayo Clinic... and then? Nothing. Just endless blood work, over and over again. I mean, sure, my labs look okay, and my last spinal scan didn't show any signs of active inflammation!
I’ve basically stopped obsessing over the illness (maybe that’s a bad move, who knows?), but I seriously don't have the bandwidth to go hopping around from one exercise session to another, and frankly, my desire to swallow a mountain of pills is pretty much zero right now.
What really gets to me are these constant aches all over—especially in my spine—but it feels more like connective tissue pain than actual bone pain. Sure, my bones ache here and there, but I don't deal with that stiffness or those textbook symptoms everyone talks about. I’m a carrier for the gene, so maybe I just have a mild version of the disease, but I’m not letting it win... screw that... I'm not backing down!🤣
I might end up seeing someone again soon, but I haven't a clue where to go. Maybe some private specialist, because if you ask me, I think I'm actually dealing with fibromyalgia... and that's the real culprit... always exhausted, my whole body hurts, anxiety, irritable bowel, panic attacks... it’s like when you’ve had a brutal workout and your entire body feels inflamed and tender. That’s why I’m leaning toward that being the main issue.
If those wild, unbearable pain flares ever catch me off guard, then yeah, I’ll take all these test results back to a rheumatologist or an immunologist.

See, this is how it goes. Our healthcare system is such an interesting mess. I did some digging online and it looks like your diagnosis actually covers a whole spectrum of autoimmune issues. It basically means they probably haven't nailed down the specific type yet—or maybe they have and just aren't being clear? Either way, you're in that spot where you might just let everything slide until the pain hits a point where you can't get back to where you are now... and right now, it hasn't become unbearable yet. From what I've gathered, fibromyalgia often comes with joint stiffness, which is pretty common for people dealing with autoimmune stuff too.
My condition—ankylosing spondylitis—started with my pelvic bones fusing together, and back then, the diagnosis was just sacroiliitis. At that stage, the pain was manageable, almost negligible. Maybe that's where you are right now. But very quickly—after maybe two or three years—other parts of my spine started hurting because of the ossification. The process just keeps moving forward while we all just sit here watching it happen. It’ll be a pleasant surprise if, in two or three years, they tell me it wasn't AS after all, but something like lupus instead.

I'm laying all this out because I feel like we get way too little information from our doctors—honestly, they probably don't have many answers themselves either—and our best shot is to take matters into our own hands. We have to research this ourselves and swap stories to figure out how to handle things and what steps to take next. If you're up for it, write back and tell me exactly what you're feeling and how you're managing—or whatever else is on your mind. If you don't have the energy to dive into this topic, then maybe—like you said—that's the right way to cope. If anyone else wants to share their experiences, specifically regarding ankylosing spondylitis, treatments, or how the disease progresses, please reach out.

Good day,
It seems everyone here is navigating such different experiences—for my part, I was diagnosed with B27-positive spondyloarthritis about four months ago. My initial regimen consisted of sulfasalazine at 2x2 and indomethacin at 3x2, but after reviewing my follow-up labs, there hasn't been any real improvement; my ESR and CRP levels remain stubbornly high. Consequently, Dr. Peric decided to add Decortin to my routine—starting with three in the morning for fifteen days, then tapering down to two until my next check-up. As for the pain, it persists in my left big toe, my left hip, and my shoulder, while a general ache radiates through my entire spine. To be fair, the pain has lessened significantly since I started the indomethacin. I have attempted to skip doses occasionally, but I simply cannot fall asleep at night—the discomfort is most acute when I am at rest.
Now, I find myself in quite a dilemma regarding whether to proceed with the Decortin—it carries so many potential side effects, and being a glucocorticoid, it is essentially a hormone. Since I haven't had children yet, I feel a certain trepidation about starting this medication. Has anyone else here utilized it, and if so, how did your body tolerate it? Did you notice any hormonal shifts or similar issues? Furthermore, has anyone explored alternative medicine? While I am not one to believe in such things, the idea feels more appealing than the endless cycle of these pharmaceuticals.
Naturally, I am performing stretching exercises both in the morning and evening. What specific types of exercises have you all found effective? Does running offer any relief? My doctor has explicitly advised me against visiting any spas or hot springs.
Thank you.

Joseph Doyle38 said:Good day,
It seems everyone here is navigating such different experiences—for my part, I was diagnosed with B27-positive spondyloarthritis about four months ago. My initial regimen consisted of sulfasalazine at 2x2 and indomethacin at 3x2, but after reviewing my follow-up labs, there hasn't been any real improvement; my ESR and CRP levels remain stubbornly high. Consequently, Dr. Peric decided to add Decortin to my routine—starting with three in the morning for fifteen days, then tapering down to two until my next check-up. As for the pain, it persists in my left big toe, my left hip, and my shoulder, while a general ache radiates through my entire spine. To be fair, the pain has lessened significantly since I started the indomethacin. I have attempted to skip doses occasionally, but I simply cannot fall asleep at night—the discomfort is most acute when I am at rest.
Now, I find myself in quite a dilemma regarding whether to proceed with the Decortin—it carries so many potential side effects, and being a glucocorticoid, it is essentially a hormone. Since I haven't had children yet, I feel a certain trepidation about starting this medication. Has anyone else here utilized it, and if so, how did your body tolerate it? Did you notice any hormonal shifts or similar issues? Furthermore, has anyone explored alternative medicine? While I am not one to believe in such things, the idea feels more appealing than the endless cycle of these pharmaceuticals.
Naturally, I am performing stretching exercises both in the morning and evening. What specific types of exercises have you all found effective? Does running offer any relief? My doctor has explicitly advised me against visiting any spas or hot springs.
Thank you.

I was diagnosed with spondyloarthritis just a month ago, so I'm in a very similar boat. Right now, I'm taking Decortin, sulfasalazine twice a day, and indomethacin three times a day, but I haven't seen any real relief. Without the indomethacin, the pain in my feet and my third toe is unbearable. I'm seriously considering stopping the Decortin because of how hard it hits the system.
I've been sticking to the stretching and breathing exercises that are typically recommended for spondyloarthritis. Personally, I don't think running does much for it; I feel like the stretching and breathing work are where the real benefit lies.
I might give alternative medicine a shot. I've heard people mention MMS, though I haven't met anyone who has actually used it specifically for this condition.