Spondylitis Association of America Forums General Discussion General Message Board for Ankylosing Spondylitis and Related Diseases X-ray results

Leme- It sounds like you would be a perfect candidate for the biologics to try and slow things down. From what I've read, Celebrex is the only NSAID that there is some evidence that it actually slows progression down, and you're already on that with apparently no effect. If you're given the choice between Enbrel or Humira or Remicade, you may want to consider Humira or Remicade. Those two have proven to be effective against Iritis/Uveitis, while Enbrel has not. They are both Monoclonal drugs. Enbrel is not. I don't know why this makes a difference, but apparently it does.

As to questions to ask about the MRI. I would want to know if those "shooting flares" you described are sysmandophytes (sp., I swear I always miss a letter somewhere in that word!).

Please let us know how your appm't goes Friday. This has been a long road for you!
Lee

Leme, I am sorry you are going through so much! Many prayers for you! Lee, hurting too bad to try and figure this out... I have my head in a floating fog somewhere else these days. What are sysmandophytes? Thanks, Eagle.

Eagle- Sysmandophytes are similar to ostophytes (bone spurs). They are specific to the spondy diseases. They look like little roundish chunks of bone. What differentiates them from bone spurs is they can develop tendrils of bone that grow between the vertebrae, connecting them. This is the start of fusion, because the bone continues to thicken, leading to the "bamboo spine" appearance on X-ray of AS. The appearance of the sysmandophytes also can help determine what kind of spondy disease it is. For example, in AS the sysmandophytes have a finer appearance. In Psoriatic Arthritis, they tend to look more bulky. My heads in a fog tonight too, so I hope this makes sense!!
Lee

When I told my father in law of my x-rays he said they were bone spurs as well, now which kind I am not sure, I shall ask.....

Thanx for all the info

Hi Leme

Just wanted to say how happy I am that you can stick your V's up at any muppet who dares say you have fibro / osteo / its-all-in-your-mind. Way to go. xx

leme,

You have iritis too? holy cow. It's just a damn shame that you had to wait for the damage to show up on an xray to feel vindicated. And that's exactly how everyone on this board feels in the end and it's such and important feeling......and I'm not even the one with AS.

About asking for pain meds......if the ultram normally helps your pain, then be honest about that, and tell them that sometimes it's just not enough and you feel like you need something stronger. Just say it. And don't pose it as a question, but just like I said 'sometimes I need something stronger for the pain'

I think what irks me the most is that these drs are aware of what AS does, but act like your body going through all these weird changes shouldn't hurt. If severe pain wasn't such a huge component of this disease, there probably wouldn't be very many posters here.

It's also important to remember that while the anti tnf's work wonders for some people, tnf is not the only source of inflammation with this disease, so yes, people will still have pain, some inflammation and flares while on these meds. Not downplaying them at all-they are helping people tremendously, and if you can start treatment aggressively, I would suggest you do so, but don't expect it to be a cure-all, and doctors shouldn't think that either.

Let us know how it goes......does your rheumy know about the iritis too?

Sarah

Congrats on getting some answers Lemme. Don,t you feel like taking your x-rays and showing them to all the Doctors that did not take you seriously in the past. On one hand we feel great that it is not all in our head, one the other hand we have a very real enemy to fight the rest of our lives.
Take care and know that you always have friends that understand here.
Mike

Mike, you bring up a good point that I have thought about during the last year, since my dx of AS. What about all of those docs that said it was in my head, or women don't get AS? Should they be notified? I say that with a certain amount of sarcasim and a certain amount of seriousness. My GP was surprised that I had AS. He takes it seriously, but he said it "educated" him as he had previously thought it was a man's disease.
What about my podiatrist that did surgery for Plantar Faciitis? Should I let him know I have AS? From reading these boards, so many have Plantar Faciitis or iritis for many years prior to Dx of AS, why don't these docs think to test for AS? Especially the eye docs? Chronic iritis (which I have never had -yet) seems to be a tale-tale sign.
Karen

Being who they are, most Doctors would not believe that we knew what was going on in our bodies and they didn,t unless God spoke directly to them and shook them from the soles of their feet to the tops of their heads and baptized them in the Dead Sea .Some are humble but many are arrogant, especially the most intelligent ones.
They are not apt to admit a mistake even when presented the evidence.We are better off not wasting any more of our time with the Doctors that did not believe us.

"Ricobrognafan, what did your xrays show?"
-- Lisa K./Merlin

Sorry -- just noticed that I was asked something three weeks ago that I didn't respond to. I think it's worth mentioning, because it might be the first confirmation evidence with others.

For me the proof in the pudding was relatively widespread "sclerosis" -- soft tissue calcification -- beginning to start - in this case around the spine. I imagine it's probably the first x-ray sign for more people than me.

-Doug