Well, I've lurked here on this great forum long enough. Here's my long saga. Feel free to skim!
I joined early summer 2018 soon after a June morning when I woke up, Googled "stiff fingers upon waking," and knew, somehow, that I had RA. My GP ran rheumatoid factor and anti-CCP tests along with CRP/SED and, although my rheumatoid factor was a low positive and the CRP/SED were normal, my anti-CCP was (literally) off the charts. Here, in this town in the US, the labs apparently cut off at 250 and my anti-CCP was past that.
Still, despite my stiff fingers, tender knuckles, and having had the past two years filled with bilateral shoulder agony and repeat physiotherapy, my GP said, "Trust me, you don't have RA." I did get to see a rheumatologist, but the digital records between the GP's office and his did not coordinate and so he never saw x-rays. I guess my lack of visible inflammation and the normal CRP/SED made him say that he, too, didn't think I had RA.
By then it was early fall 2018. Between the June morning I Googled and that fall rheum appt, I had researched continuously. I'd done what many here have done and continue to do: read official medical papers online, doing the best to glean any helpful info despite the complexity and length. I read other forums, I read blogs. I watched videos. (I joined this sane oasis.)
I knew I had RA.
From that fall 2018 rheum meeting and through to late summer 2019, I tried so hard to believe the doctors. I still read papers and sites and blogs online. I still read posts here. But I hoped, until I could no longer. I looked up at the mirror one warm August day and saw my elbow had become a little balloon. It didn't hurt. I only felt it when I put my elbow on something (which, I guess I don't often do).
It was a popeye elbow (olecranon bursitis) and that was the sign I didn't know I'd been waiting for. Saw the rheumie again and got the official diagnosis. Because my CPR/SED rates were (and still are) normal and I didn't present with very much pain, relatively speaking, he started me on just 7.5 mg MTX/week and 1 mg folic acid/day. Within a week, all pain in my shoulders was gone. It was quite dramatic, so much so, that I wondered if maybe it was just coincidental. However, my fingers didn't really show too much positive change when I met him 6 weeks later. In fact, some minor deformities had gotten worse. I should also add that he finally ran x-rays which showed quite a few erosions, even on joints that have never really bothered me. He increased my MTX dose to 12.5 mg/week.
I was taking 200 mg ibuprofen/day because of persistent tendonitis in my inner left ankle. But this week, I've decided to stop that. I'll still take an NSAID now and then, but I don't think, for me, months and months of daily ibuprofen is what I want. It's only been a week since I stopped the ibuprofen and most days have been very tough with "tinman"-itis. But today I feel pretty good -- even my ankle.
So, since this is a pretty good day, I decided to finally delurk. I want to thank all of you here. The conversations have kept me from feeling completely lost and alone. As I mentioned above, they've kept me sane and grounded. And they've given me so much hope. So thanks all of you, my fellow NRAS-ers. I'm honored you let in those of us non-Brits.