Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Lots of questions?

Here are links to info that might be helpful on AS/spondyloarthropathies re: diagnosis, characteristics in women, frequent lack of association of active AS/spondyloarthropathies with elevated sed rate or CRP, etc

DIAGNOSTIC CRITERIA FOR AS AND SPONDYLOARTHROPATHIES
https://www.kickas.org/cgi-bin/w3t/showthreaded.pl?Cat=&Board=support1&Number=100045&page=&view=&sb=&o=&vc=1#Post100045

SPONDYLOARTHROPATHIES IN WOMEN
https://www.kickas.org/cgi-bin/w3t/showthreaded.pl?Cat=&Board=support1&Number=146917&page=&view=&sb=&o=&vc=1#Post146917

ACTIVE INFLAMMATION IN AS IS NOT ALWAYS ACCOMPANIED BY CHANGES IN BLOODWORK: AS WITH NORMAL SED RATE (ESR) OR C-REACTIVE PROTEIN (CRP):*
https://www.kickas.org/cgi-bin/w3t/showthreaded.pl?Cat=&Board=support1&Number=137591&page=&view=&sb=&o=&vc=1#Post137591

*please note that the first article (Dr. Khan chapter) is now located here, the link has been changed:
http://www.ascare.org.tw/web2002/CLINICAL.htm


INFLAMMATORY BACK PAIN * see below also**
https://www.kickas.org/cgi-bin/w3t/showthreaded.pl?Cat=&Board=support1&Number=101931&page=&view=&sb=&o=&vc=1#Post101931

LINKS TO INFO ON AS/SPONDYLOARTHROPATHIES
https://www.kickas.org/cgi-bin/w3t/showthreaded.pl?Cat=&Board=support1&Number=150817&page=&view=&sb=&o=&vc=1#Post150817

RECENT FROM MEDLINE - for more on these articles see the other post here:
https://www.kickas.org/cgi-bin/w3t/showthreaded.pl?Cat=&Board=support1&Number=162153&page=0&view=expanded&sb=5&o=365&vc=1#Post162153:

Rudwaleit M, Van Der Heijde D, Khan MA, Braun J, Sieper J.
How to diagnose axial spondyloarthritis early.
Ann Rheum Dis. 2004 May;63(5):535-43.
PMID: 15082484 [PubMed - in process]
medline link
full text link
BACKGROUND: Chronic low back pain (LBP), the leading symptom of ankylosing spondylitis (AS) and undifferentiated axial spondyloarthritis (SpA), precedes the development of radiographic sacroiliitis, sometimes by many years. OBJECTIVE: To assign disease probabilities and to develop an algorithm to help in the early diagnosis of axial SpA. METHODS: Axial SpA comprises AS and undifferentiated SpA with predominant axial involvement. Clinical features include inflammatory back pain (IBP)**, alternating buttock pain, enthesitis, arthritis, dactylitis, acute anterior uveitis, a positive family history, psoriasis, inflammatory bowel disease, and good response to NSAIDs. Associated laboratory findings include raised acute phase reactions, HLA-B27 association, and abnormalities on skeletal imaging. Sensitivities, specificities, and likelihood ratios (LRs) of these parameters were determined from published studies. A 5% prevalence of axial SpA among patients with chronic LBP was used. The probability of the presence of axial SpA, depending on the presence or absence of the above clinical features of SpA, was determined. A probability of >/=90% was used to make a diagnosis of axial SpA. RESULTS: The presence of inflammatory back pain features** increased the probability of axial SpA from the background 5% prevalence to 14%. The presence of 2-3 SpA features was necessary to increase the probability of axial SpA to 90%. The highest LRs were obtained for HLA-B27 and MRI. Diagnostic algorithms to be used in daily practice were suggested. CONCLUSIONS: This approach can help clinicians to diagnose with a high degree of confidence axial SpA at an early stage in patients with IBP who lack radiographic sacroiliitis.

**
Inflammatory back pain:
1. Early age of onset < 40 years (frequently in the 20's).
2. Insidious onset.
3. Duration usually > 3 months prior to consulting a physician.
4. Associated with A.M. stiffness.
5. Pain improves with exercise, worsened by rest.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15082473
Barkham N, Marzo-Ortega H, McGonagle D, Emery P.
How to diagnose axial spondyloarthropathy early.
Ann Rheum Dis. 2004 May;63(5):471-2. No abstract available.
PMID: 15082473 [PubMed - in process]

Edited by Evelyn on 04/21/04 11:29 AM (server time).

Edited by Evelyn on 04/21/04 11:43 AM (server time).

Edited by Evelyn on 04/22/04 12:48 PM (server time).

Edited by Evelyn on 04/22/04 04:17 PM (server time).

Edited by Evelyn on 04/22/04 04:21 PM (server time).

Hi, Shirl:

Your rheumy should get over it; splitting hairs is so darn helpful: How about PreAS, then? And how about treating it properly right from the start so that your SIJs don't fuse at all? Novel concept!

DMARDs and diet and caution about anyone who cannot diagnose; never allow them to treat you.

Looks like you are in the right place,

John

"Ah but if somehow you could pack up your sorrows, and give them all to me--
You would lose them, but I know how to use them; give them all to me""
Pack Up Your Sorrows Richard Fariña and Pauline Marden

Shirl, first and foremost, you do so belong here! Consider yourself told.

Secondly, by all means talk to your GP and ask to be sent to a new rheumy for another opinion. You know that I'm not a doctor, but everything you describe definitely sounds, at the very least, like some kind of SPa. If that doctor is ignoring bone scan info, then you don't need that doctor. End of story.

The inflammation we get will not necessarily show itself in surface swelling. Although, that depends, I think, on where it is. Certainly, I didn't walk around with a visibly swollen lower back while my left SI was fusing, but I rather imagine that if this dread disease ever truly hit my hands, there might be visible swelling there. I don't know for sure. Just guessing.

Thirdly, regarding this 'doctor's' comment about B27 and 10% of the population. You can point out to the next wacko that says that that of that 10% approximately 90% get AS or one of the related spondyloarthropathies. I'm guessing on that stat., but I know that in Canada, 6% of the population is B27 and of that 6%, 93% get AS.

Shirl, you have been a member of the KA family for two years now. You can't get away from us so easily, lady.

Many hugs,

Kat

Edited by Inanna on 04/21/04 12:14 PM (server time).

Hi Shirl!

Since when is FM associated with Bilateral Sacroilitis? In my opinion, this doc appears to be a bonehead. The fact is that for Seronegative types you canNOT rely on these blood tests for accurately detecting inflamation... and my Rheumy agrees that this is a true fact. I too, have never had swelling that I could see,... so what? Most of this inflamation is too deep unless you have an ankle or knee involved where the swelling can be more visible.

Sounds to me like most of your pain is axial, so that narrows the options down to AS and it's very close cousins. Time to fire this doc and move on to someone who has a clue. Of course this is just my humble opinion.

Hugs,

mig

Hi Shirl,

I'm just sneaking a peek while I'm here at work, so I don't have time to read all the replies right now, but I'm sure I'm not the first to say, "DON'T YOU DARE LEAVE THIS SITE!" I think your rheumy is full of baloney...to put it nicely Time to fire him, I say.

Hugs,
Connie

I had the most amazing thing happen when I moved to a different state, changed insurance, and changed doctors.

My arthritis disapeared. Yep, totally gone.

It started with the HMO doctor who I repeatedly saw and repeatedly told I had it, who refused to put it in my records nor prescribe anything at all for it except things you can buy over the counter. It continued when my knee went out, swelled and and puffed and stiffened to where I couldn't walk on it, and the HMO doctor told me I was "too young" to have arthritis, and that I should eat right and lose weight. (At that time I was in my mid forties, 5'-4", about 145 lbs, and unfashionably muscled, not anorexic. The doctor is a guy about maybe my height, about 120 lbs, and probably is enjoying a profession where he can sass everybody bigger than he is all day at last without getting beaten up.... I debate whether to ask just where his medical degree is from, but that's not going to be Politically Correct. Try to imagine my reaction to being told to eat right when I already was on a LSD of my own design, before I found this websight....) When I had my first asthma attack in about 12 years the HMO doctor told me it was their "policy" not to treat with antibiotics. Remember, it's not on my chart, so I have to BERATE this doctor to treat me with SOMETHING because I have extra sticky mucous(another AS complication) and don't clear lung infections normally, another thing they won't know because of course it's not on my chart. When I had a kidney infection that triggered an arthritic flare from hell, they didn't culture me and change antibiotics and I ran this low grade infection for months. My neck flared, and my leg lost sensation. To me, a loss of sensation should be at least investigated. When after repeated requests I finally got in to see their rheumatologist, because I thought that at least a rheumie would acknowlege my medical history and get this on my charts, this useless excuse of a doctor looked at me, yes, just LOOKED at me, and told me that I was just more sensitive to pain than a normal person.
In other words, everybody I had ever seen before for the first twenty years of this disease was wrong. I never did years of physical therapy to regain use of my arms. And I'm just making up some wild story because I'm bored or something, and I like going down to the city and waiting in line forever for a parking space.

I convinced him to x-ray my cervical spine. Fortunately when they are doing that Bullsh*t poking routine for "fibro" I have actual dead spots on my shoulder muscles from nerve damage, where I can feel nothing, which is blatantly not normal. This being an HMO, they have me hand carry the films back myself from the x-ray dept. to the rheumatology dept. Mind you I am limping because my leg drags. They do not care. So, I make a little side trip into the wormen's restroom, and hold the flims up to the florescent lights to see what my neck looks like. I am pleased to see(well, not really, but you get what I mean....) that certain neck vertebrae have not managed to separate and realign themselves, and they have cute little spurs and irregularities. I am just about KILLING my neck trying to look at this in the bathroom stall, but he's already dismissed me and this is my only chance to reasure myself that I wasn't stuck in some warping of the space time continuum. I am really, really tempted to take out my pen and write on the envelope "I AM BLIND BUT I CAN SEE IT HOW ABOUT YOU?" But I control myself and don't. But it was close.

So I take the x-rays down to the R. department and most cheerfully make SURE they are delivered to the doctor's assistant and leave the building. La, la, lah-lah, ta, lah la. Toodlely too, goodbye to you, I am changing insurance thanks to you.

About 6 weeks later, on the last day of that insurance coverage I had their neurologist admit I had a spondylarthropy (duh....) and say he'd order an MRI. Two months aftwards, I get a call for the MRI to be scheduled. I told them I didn't need it anymore , out of your system, goodbye.

My new regular doctor is okay. The neuro he sent me to is....not okay....but at least I can ditch that one and try to get another. The one rheumie I saw so far was really, really not okay, but that's to be expected. I just need acknowlegement of the disease process so when I have complications we don't go thru this total, time wasting bull. Because I do have the disease, I just don't have the right doctors anymore. You probably have symptoms of the disease too, but since you, like I , am female, you are going to have to go thru this huge process of weeding out the ones who blow you off. Too many doctors have fibro on the brain. DON'T mention the fibro thing to the next doctor, because the second they start that line of thought, you will not be treated properly.

If you have been treated with drugs with rheumatoid arthritis and did not respond to them, so what? I don't think that means a thing, because that isn't what you have anyway. You have a sero negative arthriits, which means you can have inflamation going on that does NOT show up in bloodwork. You have symptoms of spondylarthropy. That's what any doctor should pay attention to, your SYMPTOMS, and what treatments you actually respond to, not anything else. Everybody else here has the symptoms in various stages of the disease, so don't feel that you don't belong.

from a Dr. Khan article that is not on the web any longer:

Shirl, you don't have to have swelling to be inflamed, I know some do have swelling but I never have. I am totally fused from my SI joints to the base of my skull. If you can't educate your Dr. on this and other points, you need to move on. J.R.

Hi Amber
I dont think I`m fused anywhere,I still have a pretty good ROM.Some things are a bit hard though.This stupid doctor never even checked that!!!! He was looking for the sore spots you get with FM,because he found them he didnt bother checking anything else!!!! I need help now,not when I am fused,as you said.Trying to live a normal life is near impossible at the moment.

Shirl

Hi Evelyn
Thanks heaps for all that information,it will come in real handy!!!!!! I will be going through it all as soon as I finish my replys.I see my own doc tomorrow,so the more informed I am the better.Thanks again!!!!!

Shirl