I finally decided to send away my SI xrays for a second opinion and this is what has come back:

"The radiograph shows some degenerative changes on both sides of the SI joints. These changes are shown by the presence of osteophytes at the lower aspects of the joints.

There is some gas formation in the joints (particularly on the left side). This again, is typically seen in degenerative and osteoarthritic joints.

The joint space is reduced on the right side, where a partial joint space ankylosis is present. This would mean that there is concern about the presence of sacroiliitis. I do not see any articular surface erosions. The left side shows similar changes which are relatively less prominent."

After the report, the radiologist made recommendations for MR examination of SI and whole spine, because he said that in a lot of patients radiographs aren't very good at making or excluding a diagnosis of sacroiliitis.

So I'm still a bit puzzled. I am in my 50's, so it could be degeneration, however I have had this stuff going on since I was 15. It also responds incredibly well to steroids, and I have a family and personal history of autoimmune disorders. I can't think of anything else that would have caused SI damage - no accidents, haven't given birth, am a bit overweight now, but not grossly and most of my life have been normal kind of weight. Haven't wrecked my body with physical overuse either.

It does seem that the difference between degeneration and the end result of long term inflammation is incredibly small and hard to define, but with my age being against me is there any chance that this still might be seen as spondyloarthritis?

if there is, then you should consider yourself luck that in your 50's there are so few damages

there could be a spondyloatropaty present and it's action is mild (regarding bone degeneration).

i guess your problem is not the diagnose - which is not so important - but the way to manage your pain, isn't it?

i do think its the inflammatory arthritis that has caused similar "degenerative changes" in my SI joint as well. i think they mention things like OA because that's far more common, but don't see why our inflammation couldn't cause similar changes.

i'm about your age, been dealing with this about 20 years less than you, but think i'm in a similar situation regarding the SI.

but thankfully now have a rheumy that is more interested in symptoms and relief than on technicalities. that's good. finally getting treatments instead of lectures!

just focus on finding someone to treat you, that's what i say!

i (and my doctor) don't think "degenerative changes" always correlate well to symptoms. so that's one reason he focusses more on treating symptoms.

yeh, prednisone (short term) is like a gift from the gods. and too bad nsaids cause side effects cause some of them were pretty awesome too til the side effects kicked in (almost immediately). but flector patch is helpful. and cortisone had its place, though now not long enough lasting. keeping rumble's comments on nerve ablation in mind.

at least they are seeing something on the X-rays and will probably do an MRI; that's good news i think.

Not so lucky. Aside from pain, since the really big flare 6 years ago I now have permanent neurological problems that result in abnormal gait and having to use crutches to walk, neurogenic bladder and bowel (comparable to an incomplete spinal cord injury), almost zero rib expansion, and a whole lot more. What I haven't got is much showing in the SI area, which so far is the only part of me that has been xrayed or MRI'd. I'm actually more physically disabled than either my mother (with severe RA)or my father (with AS) were at 15 years older than me, in spite of trying to ignore it all for my first 45 years of life and just keep on being physically active.

Pain relief would be good, but no pain relief has ever worked as effectively as anti-inflammatory treatment, and I've run out of options for that without a diagnosis of some kind of inflammatory arthritis.

cemc,
alinus was trying to look at the bright side...
Like you, the hellcat I have endured does not and never has been what I call "luck". are there people worse off, sure always...

cemc, X-rays have never, cept the first year of diagnosis, been a concluding factor for me... they change and even get better.
to me that if proof!!!

never, I repeat never give up, never give in!!!

i came here in january 2008. kept seeing everyone around me (here) get a dx.....but not me. i kept asking myself, "what in the world am i doing wrong!" then finally in sept 2010, finally saw a rheumy that was knowledgeable in undiff spondy.

the difference was the doctor. it was "simply" a matter of finding the right one. and i know that is easier said than done. i had to travel by plane, spend quite a bit of my own money for the dx. and i know not everyone can do that.

but my rationale was "if i don't, i lose my career. and that will be a lot more costly."

i think getting this better eval of the scans is a first step.

just keep searching, like me, you'll find a doctor the right doctor!

good job on the X-rays! first step!

Thanks Lon and Sue, and Alinus, even though I reacted to your post, what you say about the treatment being more important than the label is quite true. Unfortunately in the UK its highly unlikely you get access to anything other than NSAIDs without a more formal diagnosis, so I guess I have to keep pushing.

Next step (now I have seen the detail of the 2nd opinion radiologist, where his report said far more than the NHS report), is to send my SI and lumbar MRI off to the same second opinion radiologist and see what he says on that. Again, the report from NHS was so minimal (two lines) its hard to believe they looked at them for more than five minutes and there are a lot of images there. If I can get that report back before I see the rheumatologist towards the end of the month, then I might have some more ammunition to request the contrast MRI and the full spine. Full spine would be great because I have some serious problems in both my neck and the T-spine area that have never been looked at, and my rib movement is so bad it must be either well-inflamed or close to fusing.

.

i am quite at your side if you take a look at my signature...
since 2008 till 2010 my only objective was to get a diagnose.

in the mid of 2010 i remember i was in my GI office crying and praying for a receipt with Prednisone. at the same time i've had a similar encounter with a top rheumatologist from a top University Hospital asking her to teach me how to cross the line in order to get onto the biologics list...

The GI wrote the prednisone receipt. The rheumy told me what to do in order to get the biologics (not quite legal but that's another story).
But they both told me - we understand your pain. for you it makes no difference if you are fused or not. the pain is the same. but think a little. there are other options before you take this path which is a path for people who tried them all and now have no other choices.

i've bought the prednisone. i've tweaked my blood tests in order to qualify for biologics.

i've never took one prednisone tablet and never forwarded those blood tests to my rheumy.
because, after some thinking i understood their point of view.
i was lucky indeed. i've had other options to explore before those i've asked for.

the diagnose did not matter, but the options to manage my disease. luckily the diet option worked. it took 2 years, but it worked. both for my AS/uSpA and my Ulcerative colitis.
Now i am a new man, a happy man.
This is not a pro diet post. There are other ways too. My point is - stop searching for the end of the rope. Just try to find a way - and there are a lot - not to get there until they tell you you're there...


p.s.
must edit this post.
i've had the same problems in my thoracic area and my cervical area. but no fusing there (done a lot of MRI's - 7 in 2 years - in order to prove that there's a problem there).
this is way you and i are lucky - there is pain, but there's no fusing yet. think about the fact that there could be pain and fusing too...