Reactive arthritis

Jason James3 said:Philip, one more question for you. Before you actually started the medication, when your joints—like your knee, for instance—were aching, were you able to squat or straighten the joint properly? Did it interfere with your daily activities or movement? And does that apply to your other joints as well? Specifically, did they experience any visible swelling?

Well, honestly, in the beginning, I didn't even realize anything was actually wrong... it was just that my joints would ache so much that I couldn't even manage a firm handshake without struggling, and it felt similar in other places too, but since the pain always seemed to fade after two or three days, I didn't think much of it. However, once my knees started aching so intensely that simply standing up from a chair became a struggle, I realized this wasn't normal at all... so I tried cutting out all animal products, which isn't exactly easy, along with all white flour, sugar, dairy, salt, and oil, but even after two months of such a strict diet, I didn't feel any real improvement, which led me to see a doctor, even though nothing was swollen, hot, or red, and she mentioned that the condition is still in its early stages...

Bradley Martinez3 Asks:
I’ve been on Decortin for about eight months now, and I started taking Salazopyrin roughly two months ago... I was actually switched over to Indomethacin about two weeks back since nothing else seemed to be doing the trick...
I’m feeling a bit better now—considering my first shot was 60 ml, followed by two 15 ml doses—though my knee is still a little swollen and feels warm to the touch, which makes walking feel quite tight... My doctors are currently trying to taper me off the Decortin, so I’m slowly lowering the dose and just seeing how things unfold. The last couple of times I tried dropping down to 10 mg, the swelling returned quite aggressively, so they bumped me back up to 20 mg, which means I’ve learned my lesson and nothing can really catch me off guard anymore...
I don't really know anyone who has dealt with this...

What did the doctor end up saying to you... did they have any idea why the swelling hasn't gone down after all this time...
😢 Just a heads-up that you might need to keep an eye on your white blood cell counts from time to time, since Salopyrin can sometimes cause them to drop... I used to get my levels checked every three days when I first started, though eventually I moved to just once a month, as that seems to be the main side effect of the medication. I was also wondering what the specific uses are for Indomethacin and Decortin... I recently had a Daprofos injection, which acts similarly to a pain reliever, but the effects only seemed to last for about a week... 😢

Charles Gomez2 said:Well, honestly, in the beginning, I didn't even realize anything was actually wrong... it was just that my joints would ache so much that I couldn't even manage a firm handshake without struggling, and it felt similar in other places too, but since the pain always seemed to fade after two or three days, I didn't think much of it. However, once my knees started aching so intensely that simply standing up from a chair became a struggle, I realized this wasn't normal at all... so I tried cutting out all animal products, which isn't exactly easy, along with all white flour, sugar, dairy, salt, and oil, but even after two months of such a strict diet, I didn't feel any real improvement, which led me to see a doctor, even though nothing was swollen, hot, or red, and she mentioned that the condition is still in its early stages...

Anyway, I wish you nothing but the best with your ongoing treatment and truly hope you make a 100% recovery. Thank you for sharing your insights; I’m really hoping that if this turns out to be arthritis, it's just the reactive kind, especially since medications can take quite a while to actually kick in. For instance, I don't feel pain when I squeeze my hands, nor does it hurt when I touch or even apply heavy pressure to the joints themselves. It's more of this strange, migratory, wandering ache. My knees are a bit more sensitive, but it's nowhere near the level of being unable to stand up or squat normally. This has been my reality for the last month. I have an appointment scheduled with a rheumatologist next Thursday, so we'll see what the verdict is. My AST, Waaler Rose, and LR results were all finalized the day before yesterday.

Charles Gomez2 said:

Bradley Martinez3 Asks:
I’ve been on Decortin for about eight months now, and I started taking Salazopyrin roughly two months ago... I was actually switched over to Indomethacin about two weeks back since nothing else seemed to be doing the trick...
I’m feeling a bit better now—considering my first shot was 60 ml, followed by two 15 ml doses—though my knee is still a little swollen and feels warm to the touch, which makes walking feel quite tight... My doctors are currently trying to taper me off the Decortin, so I’m slowly lowering the dose and just seeing how things unfold. The last couple of times I tried dropping down to 10 mg, the swelling returned quite aggressively, so they bumped me back up to 20 mg, which means I’ve learned my lesson and nothing can really catch me off guard anymore...
I don't really know anyone who has dealt with this...

What did the doctor end up saying to you... did they have any idea why the swelling hasn't gone down after all this time...
😢 Just a heads-up that you might need to keep an eye on your white blood cell counts from time to time, since Salopyrin can sometimes cause them to drop... I used to get my levels checked every three days when I first started, though eventually I moved to just once a month, as that seems to be the main side effect of the medication. I was also wondering what the specific uses are for Indomethacin and Decortin... I recently had a Daprofos injection, which acts similarly to a pain reliever, but the effects only seemed to last for about a week... 😢

At first, I got an 80 mg Depo Medrol shot in my knee, which actually worked for a bit. That gave me enough breathing room to start on Decortin, and then they eventually put me on Salazopyrin and Indomethacin. Things were feeling okay for a minute, but then, maybe just a few days later, the swelling came right back and my knee started feeling warm again.
The doctor says I just need to give it some time. Apparently, this knee is being a bit difficult... maybe it just needs a chance to settle down. 😢
So, Decortin is a corticosteroid that helps dial down inflammation, I think. Then you've got Indomethacin, which is basically a heavy-hitter anti-inflammatory that also works pretty well for pain relief. Maybe.
I haven't had any bloodwork done since I started the medication. My doctor hasn't asked for it yet, I guess.

Jason James3 said:Anyway, I wish you nothing but the best with your ongoing treatment and truly hope you make a 100% recovery. Thank you for sharing your insights; I’m really hoping that if this turns out to be arthritis, it's just the reactive kind, especially since medications can take quite a while to actually kick in. For instance, I don't feel pain when I squeeze my hands, nor does it hurt when I touch or even apply heavy pressure to the joints themselves. It's more of this strange, migratory, wandering ache. My knees are a bit more sensitive, but it's nowhere near the level of being unable to stand up or squat normally. This has been my reality for the last month. I have an appointment scheduled with a rheumatologist next Thursday, so we'll see what the verdict is. My AST, Waaler Rose, and LR results were all finalized the day before yesterday.

That's fine, thank you. And please, don't be a stranger—once you've seen the doctor, I'd love to hear what they had to say, especially if they mention anything about reactive arthritis...

Charles Gomez2 said:That's fine, thank you. And please, don't be a stranger—once you've seen the doctor, I'd love to hear what they had to say, especially if they mention anything about reactive arthritis...

I will, absolutely. On a related note, my little cousin dealt with strep throat that actually migrated to her joints. It was like every single part of her body was aching, but her knee specifically became quite inflamed. She was on some medications—I'm not entirely certain which ones myself, though I can try to look them up if you'd like, but even she doesn't recall because it's all passed now. She’s back to being a hyperactive kid, just needs a bit of time to fully recover; besides, she isn't particularly mindful of her diet and is carrying quite a bit of extra weight for her age. I do remember that her AST levels were significantly low during that reactive phase.

I am absolutely convinced that you need to consume everything high in Iron, though unfortunately, red meat is off the table. You really ought to be loading up on as much fish and fish oil as possible—plenty of Omega-3s and even pineapple, since it acts as an anti-inflammatory. My own daily routine involves magnesium, Iron, a B-complex, Vitamin C, and as much fruit and vegetables as I can manage. I make a concerted effort to cut back on sugar, wheat, coffee, and things of that nature. But honestly, damn it, we are only human after all. Let’s just hope we can finally put an end to this ordeal. I am also certain that physical activity is non-negotiable; if nothing else, you should at least go for a thirty-minute run or hit the gym to strengthen the muscles surrounding your joints. You cannot let yourself slide! It will get better. As for reactive cases, I have read that recovery is possible even in the most severe instances. In the worst-case scenario, you might experience bouts of pain every few years or so, but it doesn't cause permanent deformities or loss of function. Take my cousin for example—she recovered completely with zero lasting consequences, acting as if she had never suffered from it at all. We just need to rid ourselves of the little beasts that plague us, and everything will be fine. Drink plenty of herbal teas and stay hydrated. Good luck once again; I’ll check back in as soon as I get my lab results the day after tomorrow and return from seeing the rheumatologist. Wish me luck—if this turns out to be arthritis, I truly hope it is at least reactive to this damn Escherichia.🤔😵

Bradley Martinez3 said:Do you guys know anyone who actually went through it and just moved on—like, it disappeared and never came back?

Sorry, I only know people dealing with rheumatoid arthritis; however, medical literature does mention reactive arthritis as a transient phase.
You might have better luck finding someone with reactive cases on an RA-specific forum.

Alright folks, I finally have my lab results back in hand... so here is the breakdown:

Erythrocyte sedimentation rate is 2 (normal range is 4-24)
CRP is 0.3 (normal range is 0.0 to 5.0)
White blood cell count is fine
Fibrinogen levels are normal
Hemoglobin is within range
Iron is elevated at 36
Rheumatoid factor is 0.10 (normal range is 0.0 to 14)
Waaler Rose is negative
My AST is sitting at 400...
Urinalysis came back sterile—no Escherichia present—but my joints are still acting up, even though they’ve been bothering me since day one🙂

Does anyone actually know what a standard AST level should be? Does anyone here have any insight into what an elevation like this might signify?

Jason James3 said:ESR is 2 (normal range 4-24)
CRP is 0.3 (normal range 0.0 to 5.0)
white blood cell count is fine
fibrinogen is fine
Hemoglobin is fine
Iron is high at 36
Rheumatoid factor is 0.10 (normal range 0.0 to 14)
Waaler Rose - negative
AST is 400...

Does anyone know what a normal AST value is? And what does it mean if it’s elevated?

Check out this thread; there might be an explanation there already. If not, just ask.
An elevated AST titer usually points to a past strep infection. Honestly, honey, you definitely don't have arthritis since all your other results, including the rheumatoid factor, look good. Your AST is likely up because of that Escherichia coli you mentioned earlier. So, just try to relax. 🙂

Jason James3 said:ESR is 2 (normal is 4-24)
CRP is 0.3 (normal is 0.0 to 5.0)
WBC count is fine
Fibrinogen is fine
Hemoglobin is fine
Iron is elevated at 36
Rheumatoid factor is 0.10 (normal is 0.0 to 14)
Waaler Rose - negative
My AST is 400..

I have no clue what a normal AST level even is. Does anyone here know what the range is, or what an elevation like this actually means?

I think the cutoff is around 200 or 250. But I recall seeing someone mention on the forum before that if the other markers aren't messed up, a jump like that might not be a huge deal. Everything else looks normal for you.

Does anyone have any updates to share?

I’m still taking Sulfasalazine (Salazopyrin), but nothing seems to be changing... I was wondering if anyone knows if this medication is considered a cytostatic drug or not, since I know Methotrexate is used for arthritis too...

Charles Gomez2 said:Does anyone have any updates to share?

I’m still taking Sulfasalazine (Salazopyrin), but nothing seems to be changing... I was wondering if anyone knows if this medication is considered a cytostatic drug or not, since I know Methotrexate is used for arthritis too...

I'm pretty sure it is a cytostatic. I'll dig into it tonight and let you know for sure.

Charles Gomez2 said:Does anyone have any updates to share?

I’m still taking Sulfasalazine (Salazopyrin), but nothing seems to be changing... I was wondering if anyone knows if this medication is considered a cytostatic drug or not, since I know Methotrexate is used for arthritis too...

So, I went to see my rheumatologist, and I promised I'd keep you posted. She examined my joints, though to be fair, I wasn't feeling much pain—even during deep squats, knee exercises, wrist movements, or heavy lifting. She told me not to start panicking prematurely. When I mentioned the Escherichia findings, she suspected Rea, so she ordered more tests, specifically looking for certain antibodies. On top of that, she insisted I visit a gynecologist to test for Ureaplasma and Chlamydia. It feels a bit unnecessary since I'm not seeing multiple partners, but she insisted she had to rule everything out. I should have all the results back in about ten days. Has anyone else here dealt with these specific bacteria?

p.s. Reactive arthritis is curable, and even in the most severe cases, the prognosis remains quite positive; you just have to be persistent and give your body enough time to repair the damage caused by those bacteria. The key is maintaining good hygiene, a healthy diet, and keeping up with a reasonable level of physical activity, along with regular checkups. I realize not everyone can afford it—very few people can—but in my opinion, it is far better to book a private specialist to resolve things quickly rather than waiting for the public healthcare system to finally find an opening for you three months down the line. Health is the ultimate priority. I'll check back in once I have news.

mellowskipper3 said:I'm pretty sure it is a cytostatic. I'll dig into it tonight and let you know for sure.

Now I'm actually more confused than when we started. 🤷
I spent some time digging through Wikipedia, and none of them are listed as cytostatics. Their chemical structures look pretty similar, though Salazopyrin has sulfur in its makeup while methotrexate doesn't.
That question really got me thinking. I was on methotrexate for seven years before switching over to Salazopyrin, which I've been taking for two now. I have an appointment with my doctor next week, so I'll definitely bring it up and ask...

Charles Gomez2 said:Does anyone have any updates to share?

I’m still taking Sulfasalazine (Salazopyrin), but nothing seems to be changing... I was wondering if anyone knows if this medication is considered a cytostatic drug or not, since I know Methotrexate is used for arthritis too...

Salazopyrin isn't a cytostatic. I'm pretty sure because I remember my doctor making a point to tell me that explicitly.

I'm slowly tapering down my dose of Decortin. It was fine until today, but now walking feels a bit harder than usual, I guess. :/

Jason James3 said:So, I went to see my rheumatologist, and I promised I'd keep you posted. She examined my joints, though to be fair, I wasn't feeling much pain—even during deep squats, knee exercises, wrist movements, or heavy lifting. She told me not to start panicking prematurely. When I mentioned the Escherichia findings, she suspected Rea, so she ordered more tests, specifically looking for certain antibodies. On top of that, she insisted I visit a gynecologist to test for Ureaplasma and Chlamydia. It feels a bit unnecessary since I'm not seeing multiple partners, but she insisted she had to rule everything out. I should have all the results back in about ten days. Has anyone else here dealt with these specific bacteria?

p.s. Reactive arthritis is curable, and even in the most severe cases, the prognosis remains quite positive; you just have to be persistent and give your body enough time to repair the damage caused by those bacteria. The key is maintaining good hygiene, a healthy diet, and keeping up with a reasonable level of physical activity, along with regular checkups. I realize not everyone can afford it—very few people can—but in my opinion, it is far better to book a private specialist to resolve things quickly rather than waiting for the public healthcare system to finally find an opening for you three months down the line. Health is the ultimate priority. I'll check back in once I have news.

Which doctor did you see? Was it one in Chicago or somewhere else?

☕

Bradley Martinez3 said:Which doctor did you see? Was it one in Chicago or somewhere else?

No, no, I’m actually over in Mostar, Canada... seeing Dr. Milko, though I highly doubt you'd be familiar with him.

Jason James3 said:So, I went to see my rheumatologist, and I promised I'd keep you posted. She examined my joints, though to be fair, I wasn't feeling much pain—even during deep squats, knee exercises, wrist movements, or heavy lifting. She told me not to start panicking prematurely. When I mentioned the Escherichia findings, she suspected Rea, so she ordered more tests, specifically looking for certain antibodies. On top of that, she insisted I visit a gynecologist to test for Ureaplasma and Chlamydia. It feels a bit unnecessary since I'm not seeing multiple partners, but she insisted she had to rule everything out. I should have all the results back in about ten days. Has anyone else here dealt with these specific bacteria?

p.s. Reactive arthritis is curable, and even in the most severe cases, the prognosis remains quite positive; you just have to be persistent and give your body enough time to repair the damage caused by those bacteria. The key is maintaining good hygiene, a healthy diet, and keeping up with a reasonable level of physical activity, along with regular checkups. I realize not everyone can afford it—very few people can—but in my opinion, it is far better to book a private specialist to resolve things quickly rather than waiting for the public healthcare system to finally find an opening for you three months down the line. Health is the ultimate priority. I'll check back in once I have news.

Please, do let us know! I'm asking anyone who has seen even the slightest progress—even if it seems trivial—to please share, because honestly, I don't have anyone else to talk to about this... nobody understands because I look perfectly fine on the outside.
I actually had Chlamydia a few years ago, which was the starting point for all of this, and when the Escherichia showed up, things just seemed to escalate. I've been with the same partner consistently and we always use protection, so I'm not entirely sure how I contracted it... everyone carries these things, they just manifest differently for different people, so I suppose it's just one of those things fate throws at you...🙂
I'll say it again, I was messaging a woman on another forum whose husband went through a terrible time with massive swelling, but he eventually recovered completely. She said the treatment lasted over six months, but now they barely even remember that awful period, which gives me hope, even if I'm not thrilled about swallowing those three large orange pills twice a day without even knowing exactly what they are...😢

mellowskipper3 said:Now I'm actually more confused than when we started. 🤷
I spent some time digging through Wikipedia, and none of them are listed as cytostatics. Their chemical structures look pretty similar, though Salazopyrin has sulfur in its makeup while methotrexate doesn't.
That question really got me thinking. I was on methotrexate for seven years before switching over to Salazopyrin, which I've been taking for two now. I have an appointment with my doctor next week, so I'll definitely bring it up and ask...

mellowskipper3, if you don't mind me asking, what condition were you managing while you were on methotrexate for all those years?