I experienced the worst pain ever today when I went for an MRI of my right shoulder. I had no idea how much pain I could handle until I spent 30 minutes motionless frozen in position with my arm fully extended. For the first time I really fear that what I've always called my normal PSA aches and pains are becoming something scary.
I started several years ago with back pain then it became neck problems which lead to nerve treatments. Swollen aching hands and wrist always. Then months later my knee swelled up like a melon, I started on methotrexate. Then it was plantar fasciitis and problems in my Achilles tendons so we added Humira. Went off all after nine months due to respiratory infections. When I went back on the Humira, it no longer helped (if it ever really had). Did three months on Embrel and developed chronic pink eye and later diagnosed with Scleritis. Today I have the problems in my shoulder specifically, but pain to my fingers and wrist again that is unbearable. I thought I would pass out today waiting motionless for the MRI to end. Wow, unimaginable shoulder pain. I'm waiting on results but really worried I will ever find relief. I'm 53 with two young daughters and for the first time today I question what my future will hold with I can't find a way to get into remission. My DR wants me to start Simponi next. Is there anyone out there who has been down a similar path and do you have advise to share. It's been over two years now on aggressive treatments with out remission of improvement.
It’s frustrating when treatments don’t work, or have side effects that warrant discontinuing them before you get the chance to figure out if they will work at all.
I think most of us on this board have been there, in one way or another.
With this disease, it seems that trials of patience are a consistent complaint. Worry about what the future holds is another biggie for us. Unfortunately, looking at the big picture will, at times, be simply overwhelming. The problem is that it can take time to find treatment that works for the individual and that will also be tolerated by the individual. I too have been on treatment for two years solid with no gaps in drug coverage of any sort. We are still working to fine tune the meds; in fact, we are still looking for another diagnosis. Right now, the big picture isn’t all that important. Remission isn’t even in the vocabulary. Getting through this week, this month? Those are what matter the most right now. I face each day as it comes, because there is nothing more that I can do. I am doing the right things, following my docs, waking up each morning and plowing through each day.
PsA is a marathon, not a lap around the track. In order to even think of remission, first we have to have good disease management. That’s the next thing on your list (starting Simponi) and hoping that it works. Working with PT to help keep your body moving, using NSAIDs to help control pain are all ways that you can take action. Keep living your life the best you can, and know that it will get better. It just takes time.