Posts by Raymond Harris11

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!

Everything is going wonderfully at Ligament. My son was actually just saved from some really intense spinal and foot pain for the second time thanks to them; they’ve been providing him with incredible therapy sessions and manual adjustments. Dr. Puljiz even recommended we get a few specific tests done that they don't typically perform in-house, and once he realized my son might need medication alongside the physical therapy, he personally referred us to a specialist.
They really deserve all the praise! I guess they can be a bit pricey, but they truly know how to help.

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.

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?

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.

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.

Benjamin Mitchell3 said:Of course, we shouldn't just toss alternative options out the window without a second thought...

Speaking from what I've seen firsthand with people close to me—and believe me, I've witnessed enough to know—skipping out on your prescribed treatment isn't just a minor oversight. It can lead to some pretty severe joint damage, potentially even landing someone with a permanent disability. It’s one of those things you really shouldn't gamble with.

When you start venturing down the rabbit hole of alternative medicine, it’s honestly hard to know what to believe. Everyone seems to have an opinion—one person swears by this supplement, another insists you need that specific remedy, and half the crowd is just trying to figure out how to get your money. It becomes this endless cycle of "try this" and "pay for that." Meanwhile, while you're busy chasing these unproven fixes, the underlying inflammation isn't going anywhere. You're essentially watching the fire burn while looking for a bucket, and all too often, people end up facing serious consequences that could have been avoided entirely if they had just stuck to their prescribed medication.

Hey, Nicole Nelson55—listen, I’m coming to you because I need some insight. If someone is sitting there with a sedimentation rate around 60 and their CRP is also through the roof, what kind of supplements or treatments actually make a dent? I'd really appreciate any advice you can give; I'd owe you one.
Without those medications, his sedimentation rate would be sitting somewhere around 150—which, frankly, sounds like a disaster waiting to happen.

I really wish alternative treatments worked for everyone; it would be such a wonderful thing. I tried just about everything with my son, but unfortunately, nothing seemed to make much of a difference.
Regarding medical treatment, as difficult as it is to accept a heavy regimen,
inadequate care can lead to some really devastating outcomes.
I know this firsthand because, despite having a sedimentation level of 40 or more and a CRP over 30, the doctor we were seeing wouldn't prescribe any treatment at all. Because of that, he suffered major setbacks within just two years, including erosive changes in his heel bone. So, here we are now.
I just really hope we haven't waited too long to start proper therapy, because I honestly don't know what the future holds.

granitecanyon2 said:Rashes can definitely be a side effect of medication. I don't have Ankylosing Spondylitis because that primarily targets the spine, whereas my issues involve every single joint in my body. To make matters worse, the doctors here seem clueless about what's actually happening—they haven't even bothered to find a real diagnosis. I'm currently seeing an immunologist at Mayo Clinic, Dr. Markel, though I’d jump at the chance to get a second opinion. This whole process is moving at a snail's pace, so if anyone knows a decent rheumatologist, please send them my way. Back in December, I had scans done on my sacroiliac joints at Mayo; they sent over the images, but somehow "forgot" to send the actual report.
My entire spine is aching, but the thoracic section is the biggest nightmare. It's even worse when my neck starts acting up, because then I'm stuck dealing with these brutal migraine-style headaches.

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?

Kyle Diaz28 said:Could anyone recommend a reliable rheumatologist in Washington, D.C.? I am 19 years old and haven't had a checkup in a year and a half because my pediatric rheumatologist stopped seeing me once I turned 18. I deal with seronegative spondyloarthropathy and I am HLA B27 positive. I'm not currently on any medication because I used to take Advil, but it caused severe stomach pain. I did buy a TENS unit, which helps quite a bit when my back hurts; I apply it to my lower back and it provides a nice "massage."

Wait, how can you not be taking any kind of treatment? I guess I wonder if you're feeling better so you don't feel like you need it, or if they just didn't prescribe anything specific to you?

My son actually went through a similar phase where he wasn't taking anything for a while, and things seemed fine for a bit, but then he started getting this pain in his foot and heel. We eventually took him to see a different rheumatologist who put him on some pretty heavy-duty medication.

I honestly can't say for sure myself whether all these medications are strictly necessary, but I suppose you really have to trust your doctor's judgment regarding the treatment plan.

Has anyone here ever tried using Cortisone or methotrexate? They seem like pretty intense drugs, so I was hoping to hear about people's experiences with them. Like, how long do people typically stay on them? And what kind of side effects should I maybe look out for?

Thank you so much for providing such incredibly thorough information. I’ve actually come across some of this while digging through medical encyclopedias and searching online, but honestly, it’s just so hard to wrap your head around such a heavy diagnosis. It feels like a constant uphill battle; just when you think things are finally settling down and you can catch your breath, the pains start creeping back in, or he gets that tightness in his heel and everything feels off again.
Now that he’s on these medications, I find myself watching him under a microscope, and we’re both starting to drive each other crazy with the sheer anxiety of it all.
I’m constantly second-guessing what kind of reactions are actually normal, but the doctors feel so distant—it’s like they aren't able or willing to give us the specific answers we really need right now.
He just developed this sort of rash on his arms, and despite my best efforts to figure out if this is a "normal" side effect from the meds (like the Salazopyrin or the Cortisone... I haven't had any luck getting a straight answer), I'm still in the dark.
Do you happen to know anything about this? I would be so grateful for any insight you might have.

I have to admit, I’m still pretty confused by all this myself. I don't really grasp the nuance between spondyloarthritis and ankylosing spondylitis—it feels like here in the States, doctors seem to toss those diagnoses around interchangeably quite often.
Mainly, he was dealing with intense pain in his heel and Achilles tendon, but he never actually had any issues with his spine.
Honestly, I haven't the slightest clue what they're basing their conclusions on, other than the fact that he tested positive for HLA B27.
What kind of symptoms or pains are you all dealing with? How did your doctors conclude you have spondyloarthritis, and what does the treatment look like for you?

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.