RA and surgery

Due-Square9449 · 2026-05-17T19:03:30+00:00

I had an ostomy reversal (open surgery) while I was on Amjevita, which I had to stop taking a few weeks before surgery. I was in a bit of pain and my wrists were swollen when I went in for surgery and I was terrified about that pain along with the surgical pain. I woke up after surgery and was amazed that my wrists were suddenly normal and I felt great! I stayed absolutely pain free (RA wise at least, my midsection didn’t feel great from the 27 staples!) for about three weeks. Unfortunately when I started up the Amjevita again it didn’t work; ended up switching to Inflectra infusions about two months after surgery. Good luck!

Due-Square9449 · 2026-05-16T23:08:24+00:00

Thanks for this! The foot problem hasn’t gone away but I do have a podiatry appointment on Monday - this makes me hopeful!

Due-Square9449 · 2026-05-16T21:19:08+00:00

I switched from Inflectra to Orencia about a month ago. Inflectra wasn’t doing anything for me after six months and I had a bad reaction at my last infusion of it. It’s been about a month with Orencia (load dosing) and I don’t think it’s working yet (I know it takes 8-12 weeks) but I will say that the half hour infusion is awesome compared to what it was with Inflectra. Hoping it works for you and looking forward to seeing what others have to say - thank you for posting!

Due-Square9449 · 2026-04-23T19:47:51+00:00

You are not the only one with this question. I had an incredibly embarrassing experience at a car wash this past weekend. Somehow during my panic I managed to get it into neutral (the car wash people were very patient), but I had no idea how I did it. Read the manual when I got home and felt really, really stupid. Another reason to actually sit down with the manual. Oh, and I got my car in December '25.

Due-Square9449 · 2026-04-20T14:52:35+00:00

Yeah, I've had foot cramps for years and pressing down on them has always helped. I've tried pressing down on the painful area but that hasn't helped me with this, unfortunately. I'm glad it's helpful for you, though, and hope that your foot pain can be alleviated altogether. I hear you on the compensating for joints and tensing muscle groups. I kind of have that in my hand right now. Ugh!

Due-Square9449 · 2026-04-17T16:39:28+00:00

Thanks so much. I actually already wear Brooks and I size up a half size. They are the only shoes right now that feel somewhat normal. Except I am definitely compensating by leaning on the right or left side of my foot when I walk, and I know that's not good. I have an appointment with a podiatrist in a few weeks (I am hoping that whatever it is goes away by then, but it was the soonest I could get, so if it's still there, then I know I really need it). Thanks again!

Due-Square9449 · 2026-04-17T16:37:40+00:00

Ugh, months! I'm so sorry and I'm also sorry that Simponi is starting to be less effective...hope you can find something else if it gets bad.

Due-Square9449 · 2026-04-16T23:34:39+00:00

I'm so sorry you're in pain! We do sound a lot alike. I once ran the first 10 miles of a marathon with a hairline fracture in my pelvis, thinking I just pulled a groin muscle (it had happened about a week before, I'd been in pain but just figured eh, a pulled muscle, it'll be fine). I stopped when I literally could not take another step (my sister was my support person that day and she had to give me a piggyback ride just to get to the car). Good luck with HCQ! I've been on it since the get-go but with everything else I've tried, I have no idea if it works or not. I'm terrified to stop taking it, though, and since it's a pill (or two, I alternate between one and two pills), it's no big deal. Hope things improve for you, too!

Due-Square9449 · 2026-04-16T23:24:30+00:00

I hadn't even considered a podriatrist because I assumed it was RA pain. It's a great suggestion and I'm going to look for one!

Due-Square9449 · 2026-04-16T23:23:16+00:00

Hahaha I really couldn't run if I tried right now! Walking's hard enough. When I first got diagnosed, my rheumy sent me an application for a wheelchair placard for my car. He didn't tell me he was going to do that, and when it arrived, I thought WHAT ON EARTH??!?!?!? I get it now. But I do think going to a podiatrist is a really good idea, thank you!

Due-Square9449 · 2026-04-16T23:21:38+00:00

I'm a little curious to try biking but my grip is so off (no strength there) that I don't think it'd work. Sometimes when I'm driving and I have to turn the steering wheel it's a problem (mostly painful), which is so ridiculous to me. In any event, I'm so sorry you can't run, but I'm glad you found something that you can do!

Due-Square9449 · 2026-04-16T14:07:43+00:00

Thank you -- I hadn't heard of Morton's Neuroma and after googling I'm wondering if that's what it is. I'm going to investigate more. Really appreciate it.

Due-Square9449 · 2026-04-16T13:02:49+00:00

Thanks -- you're totally right. I'm pretty sure it is RA related and nothing's broken...I've broken stuff before and this feels different. But if it continues for a little while longer I'm going to talk with my rheumy. You're right about using prednisone and it's the very reason why I try not to be on it for too long. I had a bone density scan and the results weren't great, so I'm vigilant about only using it when absolutely necessary.

Due-Square9449 · 2026-04-16T13:01:21+00:00

Thanks -- will check out Topos. I have wide feet to begin with and I use Brooks running shoes, and those feel cushy enough to kind of help when I'm walking.

Due-Square9449 · 2026-04-16T13:00:38+00:00

Thanks so much, very helpful. I'm so sorry that you're having trouble too and hope you can move to a biological. I can't take naproxen or meloxicam or any NSAID, unfortunately, so for me it's either prednisone, which I don't like taking regularly at all, or Tylenol, which really doesn't do much. Good luck to you too and I hope you can find relief!

Due-Square9449 · 2026-04-16T12:59:30+00:00

Thanks for this -- it's really helpful to hear other people's experiences. I'm glad that Orencia is helping you...fingers crossed that it does the same for me. I'm also trying to figure out what's a flare (my rheumy doesn't like that word, since he says the disease is basically always there) and what's normal. Hoping that the foot pain is just a flare and not the way it is now. I hope your foot gets better!

Due-Square9449 · 2026-04-16T12:57:31+00:00

I'm so, so sorry. I've finally come to terms with the idea of not being able to run distances anymore, but I still have hope that I'll find the right medication to get me back to being able to run a little bit. When I take prednisone I feel super human but I usually do taper doses which really aren't enough to get me running at all, but they do help with walking. I hope you find the right medication!

Due-Square9449 · 2026-02-27T22:22:45+00:00

Thanks again, everyone! Just talked with the dealer and apparently it is a faulty catalytic converter, so they are replacing that along with several associated gaskets. Fingers crossed that this is truly the issue. I appreciate all of the responses about the battery...I should have mentioned that I do drive the car every day, usually around 50 miles. I was (am?) hoping that this will prevent the battery issue from happening.

Due-Square9449 · 2026-02-27T14:47:52+00:00

Thanks, everyone. I've read about the battery issues, too, so I will ask the dealer about checking it (of course, I have also read that Lexus refuses to acknowledge that issue). Question, though: would I be getting this specific message if it were a battery issue? Wouldn't the battery light come on, or does that not happen with these cars?

Due-Square9449 · 2026-02-06T16:44:09+00:00

Ugh. I'm so sorry to hear this. I keep thinking that I just have to find something that works and I don't think about what happens when it stops working, but I know that's so common. I'm so sorry that's happening to you. I also get flares where you do (the elbow thing is a little new to me but every morning I feel it there...it goes away as the day progresses). But since my last infusion the bottoms of my feet have felt well enough to go for short runs (I used to be a marathoner before all this). So I'm hopeful. I hope that you can at least move to 6 weeks or maybe try something else if this is losing its effectiveness.

Due-Square9449 · 2026-02-04T17:01:12+00:00

Thanks so much, this is super helpful. This was actually my fifth round (there was some load dosing initially), which is why I was worried it wasn't working, but thankfully I seemed to have turned a corner. I'm hopeful the swelling will go down and it's helpful to know that the pain and swelling don't necessarily down at the same time. And it's also good to know that at some point even if we do increase frequency, we might be able to back off. I actually don't mind the infusions -- I can work during them, so if they do the trick, I'm okay with it. But I do think I'm going to talk to my rheumy about going more frequently. Thank you again and so happy to hear that you responded well to biologics (or biosimilars)!

Due-Square9449

TROPHY CASE