Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group so many questions!!

hi all...
i'm hoping to get some advice from all my intelligent and (unfortunately) fellow-sufferers.
how do you know when your joints have actual damage? how long does that take? i have a really old rheumy that will not do xrays on me (he hasn't since my initial diaganosis, which showed damage and degeneration in my SI joints). but now i have involvement in so many other areas, and he refuses to do any imaging. is that normal? has anyone else experienced this?

i'm currently on STD benefits that are going to run out at the end of this month, but they have cut off my checks for the last month because they "need more information" from my doctor about keeping me out of work. i am in so much pain, and i can't take NSAIDs because of my horrible GI system and all the problems i have had there, so my inflammation is brutal and consistent in most areas. i don't know what to do!

sorry for the vent, i'm just having a rough day and although i have a wonderful, supportive husband and family who have been so understanding, i'm sure you all know that sometimes it seems like no one REALLY understands...except the people on this board.

any and all thoughts, suggestions, comments, etc. are welcome! and yes, i am looking for a new doctor as i type...

many thanks in advance!

I think you have got it with your last sentence - its definitely time for a new doctor. You need to knock the inflammation and if you can't do it with NSAIDs then I don't know why you aren't on one of the anti-tnfs? You may not need more imaging if you have sufficient SI damage to get a diagnosis - you just need a rheumy who will offer far more aggressive treatment.

I'm wishing you the best of luck for a good doc and an early appointment

Since you are on a tight time-line, perhaps your GP could order some of the x-rays you need. I know that my GP ordered most of mine and had the reports sent to my Rheumy.

thanks to both! i am on enbrel, as well..i neglected to put that in my first post. it just doesn't seem to be helping with some of my joints. =(

I agree with cemc, may be time for a new rheumy. You should feel as though you doctor is listening and understanding your complaints.
I was wondering how long ago the original x-rays were? The reason I ask it that my doc tries to limit the amount of excess radiation I am exposed to. Between the doctor’s pokes and my response we can figure out where and how bad the issues are and x-rays really are just a confirmation.

Hi, laureen:


It is difficult to tell the difference between inflammation and actual damage, without an X-ray.


About two years if a site is very active, but it can take over 8 and even over 20 years in some cases.



Absolutely not normal; a complete imaging work-up should be done regularly at about 2 year intervals, for everyone with AS. You would otherwise be unable to determine the efficacy of any treatments.

The seat of AS is the intestinal tract; once this is damaged the disease will accelerate. NSAIDs greatly increased my own disease activity.

It is very important to treat AS with a combination of strict diet plus antibiotics. It is far better to treat the actual cause than just chase around symptoms.

HEALTH,
John