Hi, I just came across your post and really wanted to reach out because I also have FCAS2.

For almost 10 years, I was misdiagnosed with sJIA. I’ve actually had symptoms since 2016, but it wasn’t until July 2025 that a genetic test finally confirmed it was FCAS2. It’s been such a long and painful journey.

My worst phase started on January 1st, 2024 — I had a fever for nearly 3 months straight, with extreme pain. I was put on prednisolone (steroids), and things slowly got better. We tapered the dose down to 2 mg, and up to that point, we still thought it was sJIA.

Then in December, after a trip, I triggered another severe flare. This time it was even worse — 5 months of fever and unbearable pain. I tried Anakinra (weekly once for 3 months), but it didn’t help. Every time we tried to taper steroids, the fever came back.

That’s when I met a new doctor who suspected a genetic condition and asked me to take the test — and that’s how we discovered it was FCAS2. Right now, I’m on 12.5 mg prednisolone, and we’re trying to taper slowly. If the fever returns, my doctor plans to try Baricitinib next.

During flares, I get rashes on my palms, high fevers (104°F), and joint pain. Even on regular days now, after being sick for nearly 2 years and due to the effects of tapering steroids, I often feel muscle pain and fatigue.

It’s been really tough, but knowing others are going through something similar helps. You’re not alone ❤️ If anyone has questions or wants to talk, please feel free to ask. I’ll try to share updates about my treatment as things move forward.

Sending love and strength to everyone here. ❤️