Yeh, I'm on a Facebook group, that is part of it.

But also, when I was finally put on Humira, it changed my life so much, that I got back to living my life, in a way I really couldn't before. So, less time on forums (or FB) and more time living.

But I did appreciate the helpful ideas like going to another city in another state to get diagnosed, that was the key that opened the door to getting the humira and getting some of my life back.

Yes, I still flare, but not nearly as often badly as I did before the humira. Only need steroids once or twice a year now. The only real problem is the permanent damage in my neck and SI due to the years of uncontrolled inflammation. The neck makes it so sitting is a real challenge..still looking for a new car I can sit in. The SI makes it so I can't go swimming anymore, but that's about it for's really only a big problem when I flares about once a year now.

So, if you are having trouble getting a diagnosis and treatment, persist, so it can be managed as soon as possible...those years of uncontrolled inflammation can really do damage to the joints. And don't let anyone make you second guess yourself. I was fortunate to have doctors and PTs and a chiro who saw the inflammation, and stood behind me in finding a rheumy to dx and rx me.

Every so often, I do stop by to see what is going on.

HI! smile


Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)