Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group What if nothing has shown up on imaging???

i've been dx'ed with spondyloarthropathy or undifferentiated spondyloarthropathy or i think recently maybe with "crohn's" as that's what the humira info says on the electronic med page of my doctors' portal.

To me it hasn't mattered what its been called because my doctor has been able to get humira approved for me and its been splendid. oh sure, i have flares and such, but compared to before humira, its like night and day.

no evidence of fusing here, after 16 years of really bad flares / symptoms, and thus maybe never will fuse, who knows. just some bone spurs / osteophytes and such, that for a long time doctors said were "typical" and "common", who knows.

i am hlab27 negative and don't get iritis / uveitis either.

my symptoms are:

SI joint inflammation

cervical spine inflammation and bone spurs pressing on nerves causing muscle spasms

enthesitis...everywhere...you name it, i've had it there....wrists the worst, followed by feet (before, feet much better now), followed by maybe hamstring tendons or where the IT and TFL bands attach to the trochanter or.....when i finally found a doctor to dx me, when he asked which joints were worse, i told him "well, my elbows have always been pretty good!"

enthesitis so bad i've torn numerous tendons and ligaments. no ruptures but a few bad tears that have taken 1-3 years to heal up enough to function again.

GI inflammation: gastritis and inflammation and crohn's like ulcers in my ileum and diarrhea (with undigested food) and constipation

dry eyes (but not inflamed)

mouth sores

"butterfly rash" but only on my cheeks, not over the bridge of my nose

fatigue

flares

aleve helps

methylpred really helps

humira really helps

a little bit of psoriasis

erythema nodosum when i flared badly


prior:

flares of constipation since a child, gastritis since 30, joint stuff since 35 (1998), then the other stuff slowly started joining in.

several rheumies stumped or said not enough evidence of inflammation or said they couldn't help me,

finally in sept 2010 flew to another city in another state to be dx'ed by Dr Brent in Philly. He's written some very good papers on AS vs undiff spondy. within a minute or so said "well, clearly you have a spondyloarthropathy, let's figure out which one".

then with his dx, able to get into a good practice up here in april 2011. before that couldn't get in, tried since 2007. we first tried just using the methylpred for flares and supplements in between flares. i did feel better in between flares and the methylpred was amazing. but we both knew i couldn't use it as often as i was needing it (every 10-13 weeks) so we both agreed it was time for humira in june 2013. and the rest is history.

i'd say for you, document before humira and after. show / prove what a difference it has made in your life. then i think they'd be hard pressed to take you off of something working so well.

when i see my rheumy next, i will tell him, "this is the first fall since 2008 that i didn't feel "this close" to disability!" statements like that really help my doctor convince the insurance companies that i'm a good investment regarding the humira.