Reactive arthritis

Hey everyone,

Is there anyone else dealing with reactive arthritis? I feel like I’ve only been finding posts about rheumatoid arthritis on here. For five years now, my knees have been chronically swollen, and honestly, none of the orthopedists could figure out what was going on until one finally sent me to a rheumatologist. Even then, we're still hitting walls. My labs come back totally normal, but they did find Ureaplasma on my cervical swabs. On top of that, my HLA-B27 typing came back negative, so the doctors basically ruled out reactive arthritis altogether. Now, I’m seeing a different rheumatologist who actually thinks it *is* reactive arthritis after all. It’s super confusing. Does anyone here have this specific diagnosis? How are you guys managing the joint swelling? Most of my other joints are fine—I had one episode where an index finger swelled up, but that was it. My inflammatory markers and MRIs for all my joints look okay, except for my knees, which show significant synovitis. I’ll probably have to go in for a synovectomy on my knee soon, so I’d really love to hear from anyone who has gone through something similar. I haven't found much info on these specific issues on the forum yet. Peace.

Jonathan Mendoza31 said:Hey everyone,

Is there anyone else dealing with reactive arthritis? I feel like I’ve only been finding posts about rheumatoid arthritis on here. For five years now, my knees have been chronically swollen, and honestly, none of the orthopedists could figure out what was going on until one finally sent me to a rheumatologist. Even then, we're still hitting walls. My labs come back totally normal, but they did find Ureaplasma on my cervical swabs. On top of that, my HLA-B27 typing came back negative, so the doctors basically ruled out reactive arthritis altogether. Now, I’m seeing a different rheumatologist who actually thinks it *is* reactive arthritis after all. It’s super confusing. Does anyone here have this specific diagnosis? How are you guys managing the joint swelling? Most of my other joints are fine—I had one episode where an index finger swelled up, but that was it. My inflammatory markers and MRIs for all my joints look okay, except for my knees, which show significant synovitis. I’ll probably have to go in for a synovectomy on my knee soon, so I’d really love to hear from anyone who has gone through something similar. I haven't found much info on these specific issues on the forum yet. Peace.

You know, it’s actually pretty wild how much Ureaplasma can mess with you; it really can trigger reactive arthritis sometimes.
Maybe things have shifted a bit over the last few years, but as far as I can tell, Look, I've seen people get all worked up thinking they absolutely need to test positive for HLA-B27 to have any idea what's going on with them, but honestly? It’s just not a prerequisite. You can definitely deal with all this mess without that specific marker showing up on your labs. So, I've been sitting here wondering... how does someone even end up catching something like reactive arthritis in the first place? Like, what's the actual trigger that sets all this off?
Honestly, I think treating Ureaplasma makes total sense—assuming there aren't any major red flags or contraindications standing in the way. It’d also be pretty smart if, while they're already in there performing my son's knee synovectomy, they could just run an analysis on the synovial fluid too. It would be worth looking specifically at U. urealyticum as a potential culprit behind all this inflammation.

Jonathan Mendoza31 said:Hey everyone,

Is there anyone else dealing with reactive arthritis? I feel like I’ve only been finding posts about rheumatoid arthritis on here. For five years now, my knees have been chronically swollen, and honestly, none of the orthopedists could figure out what was going on until one finally sent me to a rheumatologist. Even then, we're still hitting walls. My labs come back totally normal, but they did find Ureaplasma on my cervical swabs. On top of that, my HLA-B27 typing came back negative, so the doctors basically ruled out reactive arthritis altogether. Now, I’m seeing a different rheumatologist who actually thinks it *is* reactive arthritis after all. It’s super confusing. Does anyone here have this specific diagnosis? How are you guys managing the joint swelling? Most of my other joints are fine—I had one episode where an index finger swelled up, but that was it. My inflammatory markers and MRIs for all my joints look okay, except for my knees, which show significant synovitis. I’ll probably have to go in for a synovectomy on my knee soon, so I’d really love to hear from anyone who has gone through something similar. I haven't found much info on these specific issues on the forum yet. Peace.

Has anyone actually gone through the ringer with ANA and RF testing... maybe even AST-O?

Arthur Smith56 said:Has anyone actually gone through the ringer with ANA and RF testing... maybe even AST-O?

I’ve been through the ringer with blood work and all those different tests more times than I can count, and honestly? Everything comes back negative. My rheumatologist mentioned it might just be caught in the early stages, which is why it isn't showing up in my labs yet. On the flip side, every single orthopedic specialist I've seen says there's definitely inflammation present—specifically synovitis in my knee..

Jonathan Mendoza31 said:I’ve been through the ringer with blood work and all those different tests more times than I can count, and honestly? Everything comes back negative. My rheumatologist mentioned it might just be caught in the early stages, which is why it isn't showing up in my labs yet. On the flip side, every single orthopedic specialist I've seen says there's definitely inflammation present—specifically synovitis in my knee..

In principle, it doesn't even have to show up in your blood... Are you on any medication right now?

Arthur Smith56 said:In principle, it doesn't even have to show up in your blood... Are you on any medication right now?

I'm not taking anything, and honestly, I don't want to touch heavy-duty meds just because one joint is acting up. My orthopedic surgeon mentioned doing a synovectomy to help with the swelling. I'm just not convinced this is actually some kind of rheumatological issue, though the pain is brutal and my joints swell up like crazy...

How does it not show up in your blood? There’s gotta be some inflammatory markers or something, right?
The rheumatologist had me getting MRIs of all my joints, and they come back totally clean—no changes at all...

Are your blood work results—like CRP, ESR, and all that—looking normal too? Usually, those markers flag if there’s some kind of inflammation going on, though not always with this kind of stuff.

melloworca6 said:Are your blood work results—like CRP, ESR, and all that—looking normal too? Usually, those markers flag if there’s some kind of inflammation going on, though not always with this kind of stuff.

I've been through the ringer with testing more times than I can count, and everything always comes back normal. Doctors told me there are tons of different types of arthritis out there, and mine—which is likely reactive to some old infection—falls under the spondyloarthritis umbrella or something similar. But here’s the kicker: from what I’ve read, people with these issues usually have elevated CRP levels, yet mine stays perfectly steady. The real headache is that I’m also dealing with an orthopedic issue—basically, my kneecaps track outward, which is called lateral patellar compression. It’s probably like a perfect storm; that structural weakness likely made it way easier for the inflammation to settle right in my most vulnerable spot...

Jonathan Mendoza31 said:I've been through the ringer with testing more times than I can count, and everything always comes back normal. Doctors told me there are tons of different types of arthritis out there, and mine—which is likely reactive to some old infection—falls under the spondyloarthritis umbrella or something similar. But here’s the kicker: from what I’ve read, people with these issues usually have elevated CRP levels, yet mine stays perfectly steady. The real headache is that I’m also dealing with an orthopedic issue—basically, my kneecaps track outward, which is called lateral patellar compression. It’s probably like a perfect storm; that structural weakness likely made it way easier for the inflammation to settle right in my most vulnerable spot...

That isn't necessarily the case, and it doesn't always happen that way. Sometimes you hit these "phases" where the inflammation just goes quiet or stays dormant for a bit.
And when you're dealing with reactive arthritis triggered by things like Chlamydia or Ureaplasma... relatively often, your CRP will look perfectly fine.

velvetmoose9 said:That isn't necessarily the case, and it doesn't always happen that way. Sometimes you hit these "phases" where the inflammation just goes quiet or stays dormant for a bit.
And when you're dealing with reactive arthritis triggered by things like Chlamydia or Ureaplasma... relatively often, your CRP will look perfectly fine.

What does my future look like? Is there any chance the inflammation stays localized just in my knees? I’m still not feeling that heavy, debilitating rheumatoid pain—and man, those people suffer, waking up in the middle of the night from the agony... is it possible I just have a milder version of this?

Jonathan Mendoza31 said:What does my future look like? Is there any chance the inflammation stays localized just in my knees? I’m still not feeling that heavy, debilitating rheumatoid pain—and man, those people suffer, waking up in the middle of the night from the agony... is it possible I just have a milder version of this?

Of course a milder version is totally possible, and yeah, it could just stick to your knees.
Then again, things can also take a turn for the worse at any given moment, too.
The best move is really just sticking strictly to whatever your doctors tell you to do; if you follow their lead, you've got a much better shot at a smoother road ahead. 😉

velvetmoose9 said:Of course a milder version is totally possible, and yeah, it could just stick to your knees.
Then again, things can also take a turn for the worse at any given moment, too.
The best move is really just sticking strictly to whatever your doctors tell you to do; if you follow their lead, you've got a much better shot at a smoother road ahead. 😉

Thanks! Honestly, I’m already spiraling a little bit with paranoia here. I’m really crossing my fingers that my knees feel better once the synovectomy is done. I’d love to connect with anyone who’s dealt with something similar or actually gone through this specific surgery—it would be great to swap stories and see what worked. I swear, sometimes it feels like I’m the only one out there dealing with these freaking inflamed knees.

Hello. Here’s my situation. It started about seven weeks ago with pain in my left elbow. Over the next few weeks, the pain intensified, spreading to my upper arm, forearm, and hand. It got to the point where even holding a coffee cup was agonizing, so I switched everything to my right hand. About two or three weeks ago, the pain became unbearable, so I called my primary care physician back in the States—though I'm currently abroad. She prescribed Advil (one 600mg tablet daily) and Aspercrem cream. After just a few days, I started feeling similar sensations in my right arm, neck, and cervical spine.

I contacted my doctor in the US again. She bumped my Advil dose up to Indomethacin 50 mg / 3 x, but the stomach pain was too much, so I dropped down to 2 x 600mg while relying on the Aspercrem.
A few days ago, my fingers on my left hand started tingling. Now, I'm also getting numbness and strange sensations in my legs.
Last night, I went to a hospital here in Germany because the widespread pain—especially in my legs—was getting worse. They found nothing. Their only solution was more painkillers, yet I have to wait 4–5 months for a specialist rheumatologist here.

I spoke to my father, who dealt with something similar years ago. He is HLA-B27 positive, and Indomethacin was what finally helped him. I reached out to my doctor in the US, and she prescribed Indomethacin 50 mg / 3 x this morning. I just took the first dose; we'll see if it actually works.

Q1) Does anyone know which specific tests I need to get ASAP to secure an accurate diagnosis? Also, which medications are most effective—Indomethacin or something else?

Q2) Any idea what this could be?

Q3) What helps regarding diet, lifestyle changes, medication, exercise, etc.?

Thanks.

wiredotter12 said:Hello. Here’s my situation. It started about seven weeks ago with pain in my left elbow. Over the next few weeks, the pain intensified, spreading to my upper arm, forearm, and hand. It got to the point where even holding a coffee cup was agonizing, so I switched everything to my right hand. About two or three weeks ago, the pain became unbearable, so I called my primary care physician back in the States—though I'm currently abroad. She prescribed Advil (one 600mg tablet daily) and Aspercrem cream. After just a few days, I started feeling similar sensations in my right arm, neck, and cervical spine.

I contacted my doctor in the US again. She bumped my Advil dose up to Indomethacin 50 mg / 3 x, but the stomach pain was too much, so I dropped down to 2 x 600mg while relying on the Aspercrem.
A few days ago, my fingers on my left hand started tingling. Now, I'm also getting numbness and strange sensations in my legs.
Last night, I went to a hospital here in Germany because the widespread pain—especially in my legs—was getting worse. They found nothing. Their only solution was more painkillers, yet I have to wait 4–5 months for a specialist rheumatologist here.

I spoke to my father, who dealt with something similar years ago. He is HLA-B27 positive, and Indomethacin was what finally helped him. I reached out to my doctor in the US, and she prescribed Indomethacin 50 mg / 3 x this morning. I just took the first dose; we'll see if it actually works.

Q1) Does anyone know which specific tests I need to get ASAP to secure an accurate diagnosis? Also, which medications are most effective—Indomethacin or something else?

Q2) Any idea what this could be?

Q3) What helps regarding diet, lifestyle changes, medication, exercise, etc.?

Thanks.

Update... blood work, urine, CRP, and ESR all came back normal. But during the day, I'm dealing with pain in my fingers, hands, legs, knees, elbows, shoulders, upper arm muscles, and ankle joints...

Anyone experiencing similar symptoms or have any clue what's going on?
I have a rheumatologist appointment in 2 weeks...

THNX!

wiredotter12 said:Update... blood work, urine, CRP, and ESR all came back normal. But during the day, I'm dealing with pain in my fingers, hands, legs, knees, elbows, shoulders, upper arm muscles, and ankle joints...

Anyone experiencing similar symptoms or have any clue what's going on?
I have a rheumatologist appointment in 2 weeks...

THNX!

Honestly, your best bet is just to talk to the rheumatologist. If they need to admit you to the hospital for more testing to figure out what's actually happening, let them. Just give us an update once you've seen the doc.

Scott Howard74 said:Honestly, your best bet is just to talk to the rheumatologist. If they need to admit you to the hospital for more testing to figure out what's actually happening, let them. Just give us an update once you've seen the doc.

I have a rheumatologist appointment next week...
By the way, some strange spots appeared on my left shin. Check the photos...

image 1
image 2
image 3
image 4
...has anyone else dealt with something similar?

wiredotter12 said:I have a rheumatologist appointment next week...
By the way, some strange spots appeared on my left shin. Check the photos...

image 1
image 2
image 3
image 4
...has anyone else dealt with something similar?

Nah, looks more like some kind of rash or maybe you're allergic to sweat or laundry detergent🤷

Scott Howard74 said:Honestly, your best bet is just to talk to the rheumatologist. If they need to admit you to the hospital for more testing to figure out what's actually happening, let them. Just give us an update once you've seen the doc.

Greetings, here is the update...

Five months ago, I dealt with a severe, long-lasting respiratory issue. It involved heavy nasal and oral congestion. After two or three weeks, I finished a course of Augmentin, and that finally cleared things up.

A few weeks later, my left elbow started killing me. Over the next couple of weeks, the pain intensified, spreading through my upper arm, forearm, and hand. It got so bad I was practically useless with that arm for weeks. My GP prescribed Advil (one 600mg tablet daily) and some Aspercrem, but after just a few days, the pain started creeping into my right arm, my neck, and my cervical spine too.

My GP bumped my Advil up to 600mg three times a day, but it trashed my stomach. I scaled it back to twice a day and just used Aspercrem on top of it, but that didn't do much either.

Two months ago, my left fingers started tingling. Now the numbness has spread to my feet, along with this strange sensation in my legs. The pain is migrating.
I called my father. He went through something similar decades ago—lasted a few months. He’s HLA-B27 positive, and Indomethacin was what actually helped him.
I started on Indomethacin 50 mg / 3 x myself. It provided some relief for about two or three weeks, but after a brief break, I couldn't touch it again. Every time I took it, the dizziness was unbearable—lasting three to four hours. Now, I just use Aspercrem twice a day on my knees, elbows, ankles, and hands.

I've switched to taking only Tylenol at night before bed, but now the pain has migrated from my elbows down to my knees and ankles. For the last two months, I’ve felt like I ran a marathon every single day despite doing nothing. My knees feel heavily swollen, even though there's no visible swelling. I'm still applying Gavex cream twice a day to my knees, elbows, ankles, and arms.

I’m dealing with occasional sharp, stabbing pains in my upper arms now, along with a sense of weakness and slight numbness. My knees feel almost constantly swollen; walking feels like I just finished running a marathon. On top of that, I've been getting nasty bouts of dizziness, especially over the last few days.

I just saw the rheumatologist. He says my symptoms point toward possible reactive arthritis. 😕 Labs are normal, X-rays look fine, urine tests are good, and stool samples should be okay too. I’m hoping it’s just hemorrhoids acting up. Right now, I'm only taking Tylenol at night before bed—avoiding NSAIDs entirely. I am still using Gavez cream twice a day on my knees, elbows, ankles, and arms.
The dizziness has ramped up again over the last few days. My knees feel even more swollen than usual, and walking feels like I just finished a marathon. 26 miles Marathon training. Also, I’ve been dealing with some nasty bouts of dizziness lately—especially over the last couple of days.

Has anyone dealt with similar symptoms? What do you recommend?

My rheumatologist wants me back for a follow-up in three months and ordered an HLA-B27 test. To be honest, I’m skeptical about the whole thing, and I've been feeling pretty lousy lately.

Thanks

wiredotter12 said:Greetings, here is the update...

Five months ago, I dealt with a severe, long-lasting respiratory issue. It involved heavy nasal and oral congestion. After two or three weeks, I finished a course of Augmentin, and that finally cleared things up.

A few weeks later, my left elbow started killing me. Over the next couple of weeks, the pain intensified, spreading through my upper arm, forearm, and hand. It got so bad I was practically useless with that arm for weeks. My GP prescribed Advil (one 600mg tablet daily) and some Aspercrem, but after just a few days, the pain started creeping into my right arm, my neck, and my cervical spine too.

My GP bumped my Advil up to 600mg three times a day, but it trashed my stomach. I scaled it back to twice a day and just used Aspercrem on top of it, but that didn't do much either.

Two months ago, my left fingers started tingling. Now the numbness has spread to my feet, along with this strange sensation in my legs. The pain is migrating.
I called my father. He went through something similar decades ago—lasted a few months. He’s HLA-B27 positive, and Indomethacin was what actually helped him.
I started on Indomethacin 50 mg / 3 x myself. It provided some relief for about two or three weeks, but after a brief break, I couldn't touch it again. Every time I took it, the dizziness was unbearable—lasting three to four hours. Now, I just use Aspercrem twice a day on my knees, elbows, ankles, and hands.

I've switched to taking only Tylenol at night before bed, but now the pain has migrated from my elbows down to my knees and ankles. For the last two months, I’ve felt like I ran a marathon every single day despite doing nothing. My knees feel heavily swollen, even though there's no visible swelling. I'm still applying Gavex cream twice a day to my knees, elbows, ankles, and arms.

I’m dealing with occasional sharp, stabbing pains in my upper arms now, along with a sense of weakness and slight numbness. My knees feel almost constantly swollen; walking feels like I just finished running a marathon. On top of that, I've been getting nasty bouts of dizziness, especially over the last few days.

I just saw the rheumatologist. He says my symptoms point toward possible reactive arthritis. 😕 Labs are normal, X-rays look fine, urine tests are good, and stool samples should be okay too. I’m hoping it’s just hemorrhoids acting up. Right now, I'm only taking Tylenol at night before bed—avoiding NSAIDs entirely. I am still using Gavez cream twice a day on my knees, elbows, ankles, and arms.
The dizziness has ramped up again over the last few days. My knees feel even more swollen than usual, and walking feels like I just finished a marathon. 26 miles Marathon training. Also, I’ve been dealing with some nasty bouts of dizziness lately—especially over the last couple of days.

Has anyone dealt with similar symptoms? What do you recommend?

My rheumatologist wants me back for a follow-up in three months and ordered an HLA-B27 test. To be honest, I’m skeptical about the whole thing, and I've been feeling pretty lousy lately.

Thanks

Those three months will fly by, just do what they told you to do.

Scott Howard74 said:Those three months will fly by, just do what they told you to do.

Thanks for the feedback, first of all. But sorry, I suspect my initial issue was likely a primary infection from some kind of pathogen. I don't know which one—I haven't run tests for things like strep, Lyme, Yersinia, Ureaplasma, or anything else, so I have no idea. That’s why I dealt with nasty discharge for weeks back in late 2013. I took antibiotics then, but maybe too late or not enough Augmentin, and now my immune system has overreacted. It’s producing something that's attacking my joints because it mistakenly thinks the pathogen is still there (starting with my elbow, then both elbows, and now mostly my knees and ankles).
My blood and urine tests have come back normal twice now. 🤷

Now I get occasional dizzy spells, and my leg muscles ache like I just ran a marathon. I also feel like my knees are severely swollen, even though they don't look it. I just apply some topical cream and take one Tylenol at night.
None of this feels sufficient. It feels like the actual cause hasn't been found or eradicated. I'm no doctor, but I strongly suspect a lingering pathogen, and that requires antibiotics, which I am currently not taking. 😕

The rheumatologist only looked at my X-rays, physical symptoms, and blood/urine work. He did NOT order any tests for potential pathogens that trigger reactive arthritis. 🤷
It's what keeps bothering me: the idea that I still have an infection, I'm not taking antibiotics, and my body is still attacking my joints because it thinks the threat is still present. 😠

Does anyone know who can order specific testing? Maybe an infectious disease specialist in a major US city like Chicago or New York? And specifically, what tests should I ask for to rule out a bacterial cause?

If I still have an infection, waiting three months without antibiotics sounds like a disaster, doesn't it? 🤷