Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group SAA - Doctors Q & A Session

I had a plain x-ray first which is what showed up the SI damage, this was why the doc then referred me to a Rheumy. When Rheumy saw the x-ray he thought I had grade 2-3 damage to SI joints(radiologist said it was grade 1). He sent me for MRI (it was the fat-suppressed one). I wasn't having a flare at the time but by golly it hurt like hell lying there for 30 mins on my back, I needed 2 assistants to get me up off the bed. These tests were all done prior to any anti-inflammatory medications being taken. Rheumy had thought it was mechanical only (and the suggestion of surgery was mentioned at my last appointment) but the NSAID's he prescribed are what I call my "magic pills" when I take then consistently I am 'normal' again and I can sleep through most of the night, I then test myself by going off them for a while and back comes the pain and sleepless nights within a day or two..(he has put me on Orudus- 200mg daily of ketoprofen taken 1 tablet nightly). I am going for a colonoscopy in a month then I have another Rheumy appointment the following week. I am going back to him about every 3 months as I have the HLA-B27 gene and with the back/hip issues I have I think he wants to keep a check on everything.

thanks mig! helpful to me as well.

those were kind of the conclusions i had come to as well.

still want my rheumy to look at my MRIs and CT scans on my disks, not just the reports, that i think would be useful, then i can rule out the difference in radiologists reports at least.

Hi Sue,

I think they would like to use MRI (in some cases) for monitoring treatment response and effectiveness on anti-TNFa therapy, to see if there is any notable decline in inflammation such as osteitis... but I don't think they would use this for treatment on nsaids, etc.

Since anti-TNF meds are so costly, (as are MRIs), some health systems require proof of the med's effectiveness in order to justify continuing and doctors want to avoid exposing a patient to risk unless they have evidence that things are improving.

I know my nuclear bone scan showed high levels of inflammation, in SI joints and length of my spine.. and this was when I'd been taking an nsaid at the highest daily dose regularly (for years). Perhaps that is oranges and apples but if inflammation is mild and intermittent, rather than high and continuous, perhaps it could be missed. MRI is the gold standard for determining sacroiliitis, enthesitis, the inflammation within bone and soft tissue damage to cartilage etc, so it does seem puzzling if no inflammation was evident.

That would be a good question for you doc, maybe!

well, if it shows up that well in the xrays, then maybe it is that difference between xrays showing bone better and MRI showing soft tissue and inflammation better. which had initially surprised me as i had always assumed MRI was better overall til i started reading and discussing.

and as my rheumy put in my report, undiff spondy which is my dx, can fluctuate greatly, as i've noted. initially i didn't note that as i would be so bad in between flares too that i'd just be going from one flare to the next, but now that i have ways of recovering better from flares, can note the flares of in between times better, more of a distinction of the two now than in the past. so if you too were in between flares.

think the reason i don't hurt so bad anymore during tests is that now routinely i take a muscle relaxant before all scan tests and then pillow up like crazy! there is one hospital that is better about making me comfortable than any of the other sites, so when i need a scan, that's where i go now. a combo of their pillows and mine. and the muscle relaxant. those two things make it bearable. without, can't even imagine.

glad you have "magic pills". this current rheumy tried first mobic, as i've had gastritis (and edema) to several nsaids. but the mobic did nothing, so he tried the ketoprofen. but one pill killed my stomach. so now on nabumetone, but its not doing anything. i find it so odd that half of them work really well but give awful gastritis and/or edema and the other half seem to do almost nothing. i don't really understand it. but seems to be "normal" from conversations with my doctors (and others here).

like you, i "test" myself too by trying to go without the flector patch. but 6-12 hours later, it starts to become obvious that the flector patch is working its "magic". now for something for the whole body and to prevent flares!

hi mig,

my challenge has been that during flares, the inflammation is "high" but in between flares it is "mild". so yes, intermittent, but not always mild.

my body reminds me of the poem:

"when she was good, she was very very good, but when she was bad, she was horrid."

its that most doctors (in the past) sort of assumed that if it were intermittent, then it must be mild as well.

but the doctor in philadelphia understands that just because its not all the time doesn't mean its not absolutely horrible when i flare. that's when the SI becomes inflamed and doesn't settle for a few months. that's when i've torn tendons or ligaments that have taken up to a few years to heal. and its not like you can just take a few months off of work once or twice a year. and he seems to understand that its the torn tendons and ligaments that largely are indicative of extreme inflammation even if intermittent.

my nuclear bone scan did show inflammation in my feet, spine, and sternum, but i had just had cortisone injections in my SI joint the month before.

but yes, at least my inflammation is mild enough most of the time as to be controlled by things like cortisone injections, flector patches.

its just those stupid flares that mess me up! but better than all the time, like you had especially before the remicade!

and most important, i now have doctors who are helping me!

all this talk is good, motivating me to not be satisfied with the lack of results on the nabumetone. time to tell the doc, "next please!"

thought it might be helping my feet, but then took a walk through the snow yesterday and that flared my heels pretty nicely. so maybe the nabumetone isn't even helping my feet. and i haven't been able to go without the flector patch while on it this last month. and the ribs went through a terrible flare for the first two or so weeks of the year, finally settling now, and only through help from my chiro; fibrous adhesions were starting to set in from the constant muscle spasms. so maybe the nabumetone isn't really working. they said somewhere to give it two weeks, its been three or more. still find it odd how some nsaids work and others don't......

i will play the ignorant here and ask if is possible to obtain their permision to post this information on kickas forums?

Great link. I am still reading so can't realy make a lot of comments side to say that from experience I don't completely agree with everything that is posted there.

Thanks, Molly! This part jumped out at me:




That's news, conflicting with what my rheumy said, regarding NSAIDS building up in your system, and having a cumulative effect. I always thought it best to avoid them when possible. And my GI said that he thought a possible explanation for the "erosion in the terminal ileum" as seen on my most recent colonoscopy could be because of taking NSAIDs. Yikes !!

Exactly Dow - NO point in tearing out one's stomach and gut! Now, I do believe that if you read further on it does mention the fact of being wary of NSAIDs if one thre stomach and gut reactions, summat about NSAIDs didn't work for everyone.

But, as opinioned before, this Q&A session surely does need updating. Now with advanced knowledge there are a lot of holes exposed - was great info 'at the time' - but research has moved forward since.

If you go to the diet section, it starts with a hundinger re the 'London Diet'. Dammned by the Dr responding, damned out of hand - extremely rudely as well considering he is referencing a Prof of rheumatology...

Interestng to open all the subject matter - me? I'd be using a red marker to cross out

Which makes another point. SAA is an information site for spondys, (albeit supported by pharma nay doubt?) so/and/but I truly do feel that the informatin contained therein shoud 'be updated' on a regular basis. Would take a concerted effort for that to happen though...

couldn't help but notice this. when my GI doc found the inflammation and small ulcers in my ileum, i asked him, if not from spondy, what else could cause it, he said nsaids, for me, i hadn't touched one for over a year and even then it was a short trial. so for me, it wasn't nsaids, but my GI doc said same thing as yours, "nsaids can cause this".