Early 40’s and my arthritis is changing gears

I was diagnosed with some sort of autoimmune arthritis when I was 28, starting with a uveitis flare-up. I had other weird symptoms like my big toe and the ball of my foot inflaming. And then there was the strange, maddening itch in my inner ear. I had torn my quadricep muscle around this time, and limped for the better part of a year while healing. I think it may have been this uneven gait that put strain on the other knee, causing it to inflame. Then they both blew up like cantaloupes. I was on indomethacin for that, which worked.

I got the blood test that told me I was HLA B27 positive, which usually spells out ankylosing spondylitis. But I don’t fit so neatly into that box. I don’t have the stiffness/soreness in my back, hands or feet, I don’t have any of the Crohn’s-like gastro symptoms, and I don’t get the skin rashes. I do get uveitis a couple of times a year, which I treat with prednisolone when needed, and I would get occasional joint complaints, usually quieted with a blast of indomethacin.

Lately…this has changed. I am currently on 50mg of prednisone – my third round in the past month and a half – to treat a massive flare-up. Round 1: Both knees flared beyond the usual stiffness to extreme swelling, treated with a week of prednisone until I could see the rheumatologist. No taper. Two days after, it was back. Round 2: 30mg again, but this time it wasn’t responding. A few days later, I called my family doctor who bumped me up to 50mg for a week, then taper. I got in to see my rheumatologist who did not want me on prednisone, so he had me taper right off it. I was fine for about a week, and then…it was back. Both knees, TMJ and my neck. I call his office…he’s on vacation. Round 3: The rheumatologist on call put me on 40mg again, but it didn’t even TOUCH it. The inflammation blew right through it and became so bad I could barely walk, even with crutches.

I went in to the emergency department and they drained my knees (OUCH) and injected them with cortisone, and bumped me back up to 50mg a day of prednisone, and this seems to be holding so far. I feel better, but I can’t stay on this stuff long-term! I’ll be a jellyfish by the time I’m 45! I’m hoping the rheumatologist can see me this week and set me up with something else. Methotrexate or something…I don’t even know.

I’m scared and frustrated. I am an otherwise very healthy individual, full of energy and with an appetite for life. I watched my grandmother languish in the throes of 24/7 arthritic pain at the end of her life. I watch my husband stress over my pain and my helplessness in the midst of it. I am so angry that my body, which I have always been able to make do what I wanted it to do, has stopped listening to me. It’s a runaway freight train on fire, and it’s heading for a cliff.

I’m just here, mainly to gripe, but also to find others who can relate to this struggle. And maybe we’ll even find some ways together to cope.

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