Yesterday, I had my second visit to the PsA research clinic in Toronto. Back in March, I went there for a second opinion after my rheumatologist said my disease wasn’t severe enough for a biologic. The real experts at the PsA clinic said that my PsA is severe, and the damage considerable. They prescribed Enbrel and agreed to take over my care. I promptly fired Rheumy #1.
At yesterday’s appointment, we went through my x-rays. Lots of good news! No SI involvement. Nothing in my spine or my neck. Fingers are stiff but no damage, ditto my toes. My remaining hip isn’t good, but I already knew that, and my surgeon’s on standby. Really the only bad news is in the middle of my feet. And what a mess of bad news it is … erosions and fusions everywhere, plus some bony outgrowths on the tops of the feet. No wonder my paws hurt.
But back to the good news: Enbrel seems to be doing its thing. I have more energy and I feel generally better than I have for, oh, about 15 years. They said that improvement in fatigue usually precedes improvement in other symptoms, and that it could be up to six months before my feet feel better. (So don’t be too quick to declare that your biologic isn’t working.)
Another positive: they took my DNA, and I signed a lot of consent forms, and I’m now part of their pool of research subjects. That can only be a good thing.
Then, this morning, I woke up and realized that I’d forgotten to strap on my carpal tunnel wrist brace last night. I was fine! No numbness, no tingling – does this mean that the swelling in there might be going down? Oh, I hope!
And finally, they were just plain nice, kind and concerned at that clinic. They even managed to act like they weren’t in a hurry to get me out the door. How refreshing!
I don’t want to seem like I’m gloating, but … well,OK, I am, really. After twenty years of having my symptoms brushed off and trivialized, two knee replacements, foot erosions, waiting to get in to see a rheumatologist, then having her say my disease wasn’t severe at the same time that PsA was trashing my hips, my appointment yesterday was like a great big hug.
I’m so, so glad I found them, and so grateful that they took me in.
Although I am frustrated for you to have been dealing with PsA for 20 years (with a Rheum who was blowing you off), I couldn’t be more pleased for you to be a part of the Toronto group! Talk about determination and will to be heard! I am happy for you for not giving up and also for your dedication to improving the lives of others with this disease! Hooray!
I'm very glad for you seenie. I love hearing good news and about good experiences with doctors, clinics, etc.
I am so glad for you Seenie, it is really good news! You go girl!
Yay!!! Wouldn’t it be the awesomest if all of our regular rheumatologists treated us like this? Mine does!! BUT he told me at my last visit that he is retiring in a year and currently looking for his replacement. I literally got tears in my eyes. He tried to console me, explaining that he didn’t want to die of old age in his office, but I am so afraid I won’t get the same love and care from the new dr. I am so happy you are finally getting the wonderful treatment you deserve!! You should walk out every visit with a little bounce in your step and hope anew. Maybe your story will convince others to not settle for treatment that is less than what they deserve, even if they have to search for it and drive a little farther. I have to drive two hours each way to see my rheumy but is so worth it!!