Ankylosing Spondylitis

I’m new to the RA forum (usually over at the Crohn’s board), but I’ve been struggling toward an AS diagnosis and I wanted to see if anyone over here had any input. I’ve been having severe upper back pain and stiffness for around six months now. I’ve had an X-ray, MRI and a nuclear bone scan done, all of which came back completely normal. I understand that this condition is hard to diagnose in the early stages because it can take up to 10 years for it to show up in x-rays and other scans. I’ve gone through a few doctors before someone would finally run a test for HLA-B27. I will be getting the results back next week, but all signs seem to be pointing to AS (pain and stiffness that’s worse in the morning and with inactivity, relief with NSAIDs, extreme fatigue, accompaniment of Crohn’s disease and uveitis). I was hesitant to believe it because I always thought AS was only in the lower back and mine is dead on T-spine, but my doctor keeps telling me it can affect the whole spine.

 

Anyway, if this ends up being the case, I’d like to be prepared. I was wondering mainly about fusion. Is it inevitable? Have any of you had AS for a long time without any fusion? Is it irreversible? Any input you guys could give me would be really appreciated. I can’t say I’m looking forward to getting this blood work back, but having run out of answers, any diagnosis seems better than no diagnosis. I don’t want to spend the rest of my life getting cortisone injections and missing out on actual treatment.

 

Oh—and one more thing: did any of you get diagnosed in the early stages of the disease?

I just posted and it was almost identical to this.  I did not read this one first, sorry!  It sounds like we are going through the same thing, except mine is in my lower back. 

I've just come to the conclusion that my SI arthritis is AS. I've been a Crohn's patient for about 10 years, but yesterday my rheumatologist was the first to connect the dots for me and call my various "sports injuries" and "achy joints" AS. I've never had uveitis or any skin issues, and my CD is pretty mild - my main complaint for the last 5 years has been arthralgia and arthritis in my hands and knees.

It was an MRI of a hamstring tear that identified the degenerative arthritis in my SI joint - that got the rheumatologist's attention. The orthopedic dr who ordered the film never made the connection between my muscle injury and my IBD, but I've felt for a long time that the hamstring tear was due to SI dysfunction.

My GI has me on ASAs (pentasa & rowasa), and added sulfasalazine about 6 months ago. My dose isn't very high (1500 mg/day) but I think the rheumatologist will want to push it up to 3000/day if my liver & kidney function look good. Maybe that's an option for you, too, Sarah.

I was given Sulfazilizan and that helped my tail bone pain. Doctors are saying I have a auto-immune issue. They said if I didn't the med wouldn't of worked.

Now Time will tell.! Good luck!