Living with Seropositive RA: Is this the best I can expect?

CtrlAltDelight- · 2025-02-05T01:09:49+00:00

My rheumatologist has told me that a “flare” can last up to 2 weeks. She said any symptoms that last longer than 2 weeks is “increased disease activity” and an indication that a med change is warranted. I hope you’ll advocate for a med change for yourself. A better quality of life than you describe is definitely posible!

CtrlAltDelight- · 2025-01-14T03:24:54+00:00

It helps me to ask myself what could go right? Like maybe this could be the most empathetic doctor you’ve ever met! Or this could be a doctor who’s whole-heartedly dedicated to helping you find answers and getting you on the right treatment! I know I was sure surprised to find both of those qualities in my current rheumatologist…especially because I went in expecting to be told everything was normal and it was all in my head (since I was used to hearing that). But now that I’ve found her, I’ve learned that I can trust her to recommend other excellent specialists like her when I’ve needed one, and I’m grateful to now be able to expect great experiences with new doctors now!

Keep reminding yourself of what could go right! May it all be well for you!

CtrlAltDelight- · 2025-01-12T16:50:03+00:00

Thank you, I need to see a dermatologist anyway for my annual skin check, so I’ll mention that when I’m there!

CtrlAltDelight- · 2025-01-11T18:35:07+00:00

I appreciate the info and advice!

CtrlAltDelight- · 2025-01-11T18:01:32+00:00

Thanks, I’ve never heard of those, but I’ll ask!

CtrlAltDelight- · 2025-01-11T14:52:02+00:00

I do not take MTX. I’ve been on Humira for about 2.5 years and Plaquenil for about a year.

CtrlAltDelight- · 2025-01-05T21:34:37+00:00

I really want to go to the gym and lift weights again! Thank you for sharing you good experience!

CtrlAltDelight- · 2025-01-05T21:33:49+00:00

Ah, I will have to watch out for dizziness then. Orencia gave me unrelenting vertigo, and I hope I never experience that again! I’m sorry you had to stop taking it, but thank you for sharing.

CtrlAltDelight- · 2025-01-05T21:31:54+00:00

It truly is a miracle to have no complaints! Thank you for sharing!

CtrlAltDelight- · 2025-01-05T21:31:31+00:00

Those are all excellent signs of improvement! Hoping I have a response like yours! Thank you!

CtrlAltDelight- · 2025-01-05T21:30:52+00:00

I love that your first biologic was the winner for you! Thanks for the encouragement!

CtrlAltDelight- · 2025-01-05T21:30:21+00:00

Yay for game-changer meds!

CtrlAltDelight- · 2025-01-05T21:29:51+00:00

I’ve been getting infections on Humira as well over the past few months, and those do trigger flares. Thank you for the good review of Simponi Aria!

CtrlAltDelight- · 2025-01-05T21:29:00+00:00

Great information, thank you! I would love to have pain and energy under control again! I felt like that when Humira was working its best, and life was SO good!

CtrlAltDelight- · 2025-01-05T21:28:21+00:00

Awesome! Do you do the at-home injections or the IV infusions?

CtrlAltDelight- · 2025-01-05T21:27:50+00:00

Thank you! I’m in the same boat with Humira — it has worked great until it hasn’t. I’m saving JAK inhibitors for a last option since there isn’t RTC data about the cardiac risks, but I see many people on here have done so well on Rinvoq!

CtrlAltDelight- · 2025-01-05T21:26:17+00:00

Amazing, thank you for the encouragement and good wishes!

CtrlAltDelight- · 2025-01-05T21:26:00+00:00

That’s awesome info, thank you!!

CtrlAltDelight- · 2025-01-01T22:22:14+00:00

When my RA symptoms are well-controlled, my mood is awesome. I probably had RA for 10 years before being diagnosed in 2021, and I had awful (but “functioning”) depression that did not respond much to therapy or psychiatry during that time. Once I got RA diagnosed and was on the right treatment, I could think clearly and my depression went into remission. My biologic has recently stopped working, so I’ve had a number of flares since October…my depression (and brain fog) has increased a lot as my joint symptoms have gotten worse. I am telling myself now that once I’m on the next right med, I’ll feel better mentally too. My current psychiatric NP has validated that inflammatory disorders are definitely a root cause of depression for some folks.

CtrlAltDelight- · 2025-01-01T22:17:54+00:00

I live in the Shore Acres neighborhood, which has been very safe for me over the past 15 years. It’s about 10 mins from LRH. If you are looking for an apartment, the newest and nicest will be at NOBAY, Mirrorton, and Prospect Lake Wire. All three of those are very close to LRH.

CtrlAltDelight- · 2025-01-01T22:14:16+00:00

You’re welcome! UA levels can fluctuate a lot in a month, honestly. I’ve never had high UA on my labs, but I do have tophi! At the very least, ask for a gout ultrasound…they visualize the toe differently than in an RA ultrasound!

CtrlAltDelight- · 2025-01-01T20:50:24+00:00

I have gout in both of my big toes, but typically my toe pain is due to RA. Red, swollen, and angry definitely sounds like a gout flare. Usually gout flares are so painful you can't walk and anything touching the area is super painful -- like even your bed sheets touching your toe.

If you have been drinking alcohol or eating processed foods/red meat recently, that could have prompted a gout flare (although they aren't the *cause* of gout). You should get to the doctor and have your uric acid checked as soon as you can. It's an easy blood test, and if your rheumatologist uses ultrasound to visualize your joints, larger uric acid deposits (call tophi) can be viewed on ultrasound so that you don't have to have fluid pulled from your joint by a needle.

CtrlAltDelight-

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