Living with Spondyloarthropathy

Raymond Harris11 said:granitecanyon2, what specific diagnosis were you given? What did they tell you was causing all that joint pain? I think my son is dealing with something similarly vague.
Does anyone happen to know how an Ankylosing Spondylitis diagnosis is actually confirmed? Is an X-ray required, or is there some other way they determine it?

From what I understand, they usually diagnose ankylosing spondylitis far too late—it's a common issue. You typically need to test positive for HLA-B27, and they really have to see evidence of spinal fusion on an X-ray... plus, based on how you're describing that lower back pain, it sounds like it's heading that way.

Does anyone know a decent rheumatologist who isn't at a major university hospital?
The joint damage is getting worse, and I’m basically just living on Ibuprofen whenever the pain becomes unbearable.

granitecanyon2 said:Does anyone know a decent rheumatologist who isn't at a major university hospital?
The joint damage is getting worse, and I’m basically just living on Ibuprofen whenever the pain becomes unbearable.

I'm not sure how old you are or if you're still able to visit Mayo Clinic, but they have an absolutely wonderful doctor there,
though I've also heard there's a really great rheumatologist over at Mount Sinai—I think they have an Italian last name. Maybe try asking around, and if I hear anything else, I'll definitely let you know.

The doctor over on Washington Boulevard is Dr. Gregory—but keep in mind, he’s a rheumatologist. I suspect his prescription range is pretty limited to stuff like Voltaren or Ibuprofen; it seems to me that only immunologists have the authority to prescribe the heavier-duty medications. To be honest, I went to see him myself, and I wasn't exactly blown away by the experience.

Melissa Moore39 said:The doctor over on Washington Boulevard is Dr. Gregory—but keep in mind, he’s a rheumatologist. I suspect his prescription range is pretty limited to stuff like Voltaren or Ibuprofen; it seems to me that only immunologists have the authority to prescribe the heavier-duty medications. To be honest, I went to see him myself, and I wasn't exactly blown away by the experience.

Gregory is actually a top-tier rheumatologist.
And he doesn't just hand out Voltaren; he prescribes whatever specific therapy is required for your actual diagnosis.
I live with ankylosing spondylitis myself.
With all those awful, nagging pains...
In my opinion, when dealing with any kind of rheumatic disease, getting some treatment at a spa resort is absolutely vital.

Amy Fowler5 said:Gregory is actually a top-tier rheumatologist.
And he doesn't just hand out Voltaren; he prescribes whatever specific therapy is required for your actual diagnosis.
I live with ankylosing spondylitis myself.
With all those awful, nagging pains...
In my opinion, when dealing with any kind of rheumatic disease, getting some treatment at a spa resort is absolutely vital.

So, what kind of treatment are you actually taking????
And if it isn't too much of a secret, how old are you?

Melissa Moore39 said:So, what kind of treatment are you actually taking????
And if it isn't too much of a secret, how old are you?

I'm 32, and honestly, I'm not taking any anti-inflammatory meds right now. My doctor prescribed some pretty heavy-duty stuff, but I haven't even touched them yet.
Basically, all those treatments everyone keeps mentioning in these posts... nothing new there.
For the pain—which, let's be real, is constant at this point—I've been using Tylenol (an opioid version).
I really ought to be exercising every single day, but sometimes I just can't find the motivation...
My mom actually had ankylosing spondylitis. She used to work out twice a day, every day.
The thing is, you have to manage this diagnosis through daily movement, otherwise it takes over.
You can't let your spine fuse together. And the only way to stop that is mechanical action. Just... exercise.
My doctor also suggested a TENS unit, so I went ahead and bought one, and oh $267 boy... it actually works.
It’s just like the medical-grade TENS units they give you during physical therapy sessions. You know, the electrical stimulation.

Since my mom was a healthcare professional, I've basically gone on a tour of every rheumatologist, immunologist, and physiatrist out there...
I haven't pulled the trigger on the medication side of things yet because, from what I understand, they often do more harm than good. If I recall correctly, if you're on Sulfasalazine, you have to get your liver checked every single month.
Besides, my doctor was very blunt with me; he said I could take the best medication in the world, but if I'm not exercising, it won't make a bit of difference!
Anyway, for now, it's just an incurable condition... but I suppose with enough persistence and discipline, you can keep it at bay.

Amy Fowler5

What kind of opioid is this Tylenol thing anyway? Does it actually help take the edge off the pain?
Where exactly are you feeling it, and have you started feeling any stiffness yet?

Is there any brain fog involved—and are you running a fever?

Tylenol or tramadol are both synthetic analgesics—opioids, essentially. If you're on them long-term, there's a real risk of developing a dependency.
They’re usually only prescribed for the most intense pain. They definitely work, though... they even make them in liquid drops.
Whenever my body completely locks up, I have to go get injections with Tylenol.
In my opinion, it’s probably the strongest pain reliever available... right after morphine.
You can't just pick it up off a drugstore shelf; it’s strictly prescription-only.
Doctors are actually pretty hesitant to prescribe it because of how incredibly potent it is.

For a diagnosis like this, you really ought to be taking antithyroid medications alongside some analgesics.

You say you aren't interested in taking heavy-duty medications—like steroids or Sulfasalazine—but then you're using Tylenol, which is also quite potent; I suppose I don't quite see the distinction there...
You didn't mention whether you've been running a fever or if that joint stiffness has started setting in yet. I honestly know very few young people who deal with those specific symptoms, and I find that part rather intriguing.

What kind of testing is actually required to reach a final diagnosis? I was at Mayo Clinic back in 2002 where they gave me a "diagnosis," but since then, all they've done is run blood work and nothing else.

Long-term reliance on stuff like Sulfasalazine or corticosteroids—not to mention Tramadol—just isn't a sustainable way to go. You’ve got to watch out for things like anemia and that general sense of being completely wiped out (especially with Sulfasalazine), plus you're messing with your hormones and immune system balance in ways that aren't great. Honestly, I've seen much better results using natural approaches, specifically with devil's claw extract and fresh nettle supplements. People have been sticking to them for several months now, and my clients are actually really happy with how they feel.

Honestly, Nicole Nelson5, I have to wonder—which firm are you actually representing here?
Are the clients happy with your services?
Of course, you’re obligated to give me the pitch... business is business, after all.

To be blunt, most immunologists seem to be completely out of their depth when it comes to the actual science.

It’s clear you’ve never had to deal with a truly debilitating illness yourself.

I’ve been dealing with spondyloarthritis for four years now. Throughout high school, I was exempt from PE, but since starting college, I’ve taken up swimming, and I have to admit it really helps. It feels similar to traditional exercise, though much more taxing—especially if you've completely lost your conditioning over those four years of inactivity. To be honest, after the first few sessions, everything aches because your body isn't used to that level of exertion, but once you get past that, it feels amazing. My only issue was that I could only go once a week; now that the semester is over, my swimming schedule is done too, and I just don't have the time to commute to Brooklyn every single day just to hit the pool. Does anyone happen to have a link to some decent spinal exercises?

I haven't seen a rheumatologist in two years. I used to see Dr. Tambić-Bukovac at the clinic, but once I turned 18, I wasn't able to go there anymore. Does anyone know of a good rheumatologist near the Rib? I've heard there's one who just hands out prescriptions without much else, which is exactly what I want to avoid. I deal with spinal pain almost daily, but it's manageable enough that I don't take any medication. It has been a long time since I had blood work done, so I'm not sure what my sedimentation rate is. From what I recall, it never reached 40 or anything particularly high. Does that mean, thank God, that the disease hasn't progressed significantly? Also, could someone explain what "ossification" actually entails? Is that something specific to ankylosing spondylitis?

I apologize for the length of this post, but I would truly appreciate it if someone could answer a few of these questions.

Thank you!

Raymond Harris11 said:I was wondering if anyone here has experience using methotrexate for treating rheumatoid arthritis (or spondyloarthropathy).
My 17-year-old son is about to start taking it once a week. He’s already on a regimen of sulfasalazine, Indocin, and Cortisone, so I can't help but feel a little anxious about adding something else to the mix. If anyone has any insight or personal experience they could share, I would truly appreciate it.

Look, methotrexate is actually great for treating RA. I'm speaking from my own experience working with patients. Since it acts as a folic acid antagonist, you just have to make sure the patient is getting enough folic acid—usually 5 mg twice a week. That's the key.

Nicole Nelson55 said:Long-term reliance on stuff like Sulfasalazine or corticosteroids—not to mention Tramadol—just isn't a sustainable way to go. You’ve got to watch out for things like anemia and that general sense of being completely wiped out (especially with Sulfasalazine), plus you're messing with your hormones and immune system balance in ways that aren't great. Honestly, I've seen much better results using natural approaches, specifically with devil's claw extract and fresh nettle supplements. People have been sticking to them for several months now, and my clients are actually really happy with how they feel.

What kind of nonsense are you peddling?☕You sound like some amateur herbalist from a roadside stand. Sure, it would be just lovely if I could just hand a patient some damn nettle when they're in the middle of an acute RA flare-up. 🤣

mistyhound2 said:Look, methotrexate is actually great for treating RA. I'm speaking from my own experience working with patients. Since it acts as a folic acid antagonist, you just have to make sure the patient is getting enough folic acid—usually 5 mg twice a week. That's the key.

I was wondering if anyone could share their thoughts on methotrexate dosing? My son’s doctor started him on 20 mg once a week (he weighs about 130 lbs, so I assume that’s how they calculated it), and we’ve already begun the treatment. I’m feeling a little unsure if that dose might be too high, especially since I've seen so many different interpretations online.
Is it necessary to take folic acid after starting methotrexate? I read somewhere that it really should be part of the regimen, but his doctor hasn't mentioned anything about it yet.

Kyle Diaz28 said:I’ve been dealing with spondyloarthritis for four years now. Throughout high school, I was exempt from PE, but since starting college, I’ve taken up swimming, and I have to admit it really helps. It feels similar to traditional exercise, though much more taxing—especially if you've completely lost your conditioning over those four years of inactivity. To be honest, after the first few sessions, everything aches because your body isn't used to that level of exertion, but once you get past that, it feels amazing. My only issue was that I could only go once a week; now that the semester is over, my swimming schedule is done too, and I just don't have the time to commute to Brooklyn every single day just to hit the pool. Does anyone happen to have a link to some decent spinal exercises?

I haven't seen a rheumatologist in two years. I used to see Dr. Tambić-Bukovac at the clinic, but once I turned 18, I wasn't able to go there anymore. Does anyone know of a good rheumatologist near the Rib? I've heard there's one who just hands out prescriptions without much else, which is exactly what I want to avoid. I deal with spinal pain almost daily, but it's manageable enough that I don't take any medication. It has been a long time since I had blood work done, so I'm not sure what my sedimentation rate is. From what I recall, it never reached 40 or anything particularly high. Does that mean, thank God, that the disease hasn't progressed significantly? Also, could someone explain what "ossification" actually entails? Is that something specific to ankylosing spondylitis?

I apologize for the length of this post, but I would truly appreciate it if someone could answer a few of these questions.

Thank you!

It sounds like you've had a bit of luck; thank God that your back pain stays at a manageable level. I'm sure swimming is doing wonders for you.
We also went to that same clinic. I'm thinking you might be able to continue seeing her even after turning 18, so it might be worth asking if you were happy with her care.
With that doctor, things seem fine if you aren't facing major issues or intense pain, as she doesn't tend to prescribe heavy-duty meds. However, it seems to me that when severe pain or actual damage occurs, she might not be as equipped—or perhaps she just chooses not to—to handle it.
How long were you under her care, and what kind of issues were you dealing with? Did you feel like she actually helped you, or did she mostly just look at your lab results?

Raymond Harris11 said:It sounds like you've had a bit of luck; thank God that your back pain stays at a manageable level. I'm sure swimming is doing wonders for you.
We also went to that same clinic. I'm thinking you might be able to continue seeing her even after turning 18, so it might be worth asking if you were happy with her care.
With that doctor, things seem fine if you aren't facing major issues or intense pain, as she doesn't tend to prescribe heavy-duty meds. However, it seems to me that when severe pain or actual damage occurs, she might not be as equipped—or perhaps she just chooses not to—to handle it.
How long were you under her care, and what kind of issues were you dealing with? Did you feel like she actually helped you, or did she mostly just look at your lab results?

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.

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...😠