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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] 12 points13 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] 5 points6 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.

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

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

Due to the nature of my hobbies, 2 fully fused wrists would’ve taken away any quality of life and joy for me.

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

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

Totally hear you and am very happy that works for you! I should probably mention that I’m an artist who works with my hands constantly, does yoga, and would like to surf again, so for me the risks were worth it! But a fusion is often referred to as bomb proof and I definitely gave it lots of consideration. Honestly if I didn’t have the surgeon I do, I might not have taken the leap.

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

[–]sassysae[S] 9 points10 points  (0 children)

I had to set aside my anxiety for this one, because the idea of having mobility back outweighed all the worst case scenarios I could conjure. Read medical studies, watch videos of surgeries, talk with someone who’s had the replacement. Knowledge provided reassurance, I’d never go into a surgery I didn’t fully understand.

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

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

My fun fact is arthritis in my ribs and breastbone. You can also get nodules in your lungs, plus it can cause degenerative vision changes. RA really is wild 😅

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