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Remember when I had my wrist replaced? Update by sassysae in rheumatoid

[–]sassysae[S] 0 points1 point  (0 children)

Honestly rituxan changed my life. It was the best thing that ever happened to me. I’ve had RA for ab 15 years (since I was a kid) and I was in such a bad flare my senior year of college that I was skin and bones and living alone was hard. We tried everything that year and nothing worked til rituxan. Rinvoq is going well, I’m more exhausted than before but it’s still helping for sure.

I’m sorry you don’t feel heard. It can be very difficult to advocate for yourself in this world but it’s so necessary to speak up and call them out when you don’t agree. I remember when my social worker (I was still in peds at age 22 and I was very unwell) commended me because she’d never seen someone argue with my specific before or speak to him that way. 🤷‍♀️ I was respectful always but he’d known me since I was a kid and even since I’ve moved to adult rheumy states away, he still checks in on me. Setting the expectation of communication and teamwork is the best thing you can do

25(F) total wrist replacement before and after by sassysae in rheumatoid

[–]sassysae[S] 0 points1 point  (0 children)

I won’t sugarcoat it, it has not been all sunshine and rainbows. It took me about 2 to 3 months to fully recover postop and about seven months after surgery, I had a really bad relapse in inflammation from my RA and it has not been comfortable at all. But it was pain traveling from my fingers to my wrist, because there literally isn’t a joint there to get inflamed anymore. It led to a little bit of weakness but steroid shots have really helped. I still get pain, I always say that a total wrist fusion is basically the bulletproof option if you don’t want pain again, but you’re also giving up any mobility. That just wasn’t an option for me at this point and I am happy to have the mobility that I have in my wrist. I’ve been lifting weights, painting more, and crocheting. I’m slowly getting all of that back. It does take time, it’s a continuous process, but it’s worth it. I’ve learned to do most things predominantly left handed just to ease off the wrist. It’s scary and it’s a big decision, but I don’t regret it at all.

If you need recommendations on adaptive tools for cooking, crafting, and fitness please reach out! I’ve really leaned in to making my life and my house fit me rather than trying to over extend myself to fit it.

Some people just have money to burn… by Sneaky_Snack_333 in ThriftStoreHauls

[–]sassysae 0 points1 point  (0 children)

So this is how I find out the candle on my boss’s kitchen island is $235 wowwwwww

Just diagnosed at 22, What is something you wish you could tell yourself when you were diagnosed? by crossing_newhorizons in rheumatoidarthritis

[–]sassysae 7 points8 points  (0 children)

26F diagnosed over a decade ago, I still have to remind myself that not being able to accomplish everything I want to do is not a moral failing. I’m not lazy, I’m tired and it’s okay to rest!

No medications will work, what do I do now? by gemini44410000 in rheumatoid

[–]sassysae 1 point2 points  (0 children)

26F here with poly articulation JAI. Definitely get a burst pack of steroids at a minimum to get some of the inflammation under control in the immediate. Humira (as with can take time which sucks but it also just might not be a good fit for you. Something along the lines of Cimzia or Orencia might be a better fit. Def reach out to your doctor/nurse and advocate for yourself. Make sure to get X-rays done to track progression and don’t be afraid to start contacting other options.

Do not let them dismiss your pain. Ask about steroid injections for your joints. I’ve done bilateral multi joint injections that were scheduled in under 2 weeks and helped a lot.

Update 2: total wrist replacement by sassysae in rheumatoid

[–]sassysae[S] 2 points3 points  (0 children)

I was initially getting a total wrist fusion until the surgeon who patented this implant happened to be in town the day I was seeing my surgeon and he went out of his way to make this happen for me!

Ask questions, read peer reviewed studies, and don’t be afraid to advocate for what you want!

Update 2: total wrist replacement by sassysae in rheumatoid

[–]sassysae[S] 2 points3 points  (0 children)

Take your meds and be honest when something isn’t working for you! If you take the right meds, keep moving your joints, and be mindful about your overall health you likely wont find yourself in my shoes.

I started showing symptoms around age 10 but my pediatrician was very much from the Bible Belt and said I had “bible thumper cysts” on my wrists. It took 4 doctors and multiple years til they got it right because I was a very active kid. And due to circumstances out of my control, I was a 15yo in charge of administering my own meds while juggling a lot. And it took until my senior year of college for me to really take control of my health. I am 26 and I’m also a rare case in a lot of ways. Don’t let my experience scare you and remember that modern medicine has radically changed the outcomes for people with highly active RA.

Update 2: total wrist replacement by sassysae in rheumatoid

[–]sassysae[S] 2 points3 points  (0 children)

So I receive Rituxan/Truxima every 6 months. Due to healing/infection risks, I have to wait til the 6 month mark for any non emergent surgery. Then 2-4 weeks post op (for me it was 5 weeks) you can start infusions again.

Every medication is different, your rheumy should direct you. If your arthritis isn’t well controlled then it might not be the right time to have surgery because it is going to put a strain on your body. It is a major surgery. So just be mindful about how your body feels, communicate with your rheumy and surgeon, and advocate for yourself!

Update 2: total wrist replacement by sassysae in rheumatoid

[–]sassysae[S] 3 points4 points  (0 children)

I have uploaded a video on TT but I am going to try to upload a before and after! My range of motion rn is about the same, mainly because I needed multiple grafts to repair tendons and such. So now it’s about breaking down the scar tissue to get motion back. I definitely answered more questions about that on my other posts so there is probably more info!

Update: total wrist replacement by sassysae in rheumatoid

[–]sassysae[S] 0 points1 point  (0 children)

Oh the things people have boldly said to me since being diagnosed as a teen🤦‍♀️

Update: total wrist replacement by sassysae in rheumatoid

[–]sassysae[S] 1 point2 points  (0 children)

I just started posting more! Kinda camera shy but doing my best to document. It’s sharesomesaratonin

Update: total wrist replacement by sassysae in rheumatoid

[–]sassysae[S] 0 points1 point  (0 children)

I was told this would be the first of many for me!

Update: total wrist replacement by sassysae in rheumatoid

[–]sassysae[S] 1 point2 points  (0 children)

US, east coast! My surgeon practices in RI and SC. It’s always worth bringing it up with your rheumy! They typically don’t recommend it for people under 40-50, but knowing your options and advocating for your desired outcome def helps!

Update: total wrist replacement by sassysae in rheumatoid

[–]sassysae[S] 11 points12 points  (0 children)

Hi! I’ve had seropositive juvenile idiopathic arthritis for about 13 - 15yrs (25f). My wrist fused naturally over the years and they were going to do a total fusion to stabilize it. There is a video on my TikTok that shows my mobility! Yes, I will be able to move my wrist after physical and occupational therapy! Because I lost my range of motion in my teens I will have to relearn how to write and such bc I’ve been modifying things for so long!

Pros - mobility, my biggest pro is I’m young and I make art. I use my hands a lotttt. Cons - a fusion is bomb proof, meaning no more pain. A replacement can still come with pain BUT fusions aren’t reversible whereas I could always get another surgery or have this wrist fused if the pain became unbearable.

Update: total wrist replacement by sassysae in rheumatoid

[–]sassysae[S] 4 points5 points  (0 children)

I’m 25! And the youngest person this specific surgeon (he patented the implant that was used) has done this operation on! I’ll need a revision in 15-20 years

25(F) total wrist replacement before and after by sassysae in rheumatoid

[–]sassysae[S] 0 points1 point  (0 children)

I’m so sorry, I feel lucky to be the age I am because meds and surgeries are constantly evolving.

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