Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group MY SISTER and AS, an update

Saltire,
Sorry to hear about your sister. When my RA was really active I was underweight too. When you are in pain you do not want to eat I think.
I heard of a thermography or thermal imaging that shows inflammation anywhere in the body. I read about it at www.mercola.com. Dr. Mercola used it for breast cancer detection , arthritis and other diseases. It lights up where there is pain and inflammation. Perhaps she could find a doctor that has one of these machines and it will show her inflammed si joints.
To read about thermography here is link:
www.natural-health-center.com/services/thermography.aspx

I hope she gets better.

thanks guys and gals, you are the bees knees

Saltire - thermography is available in the UK - London, yes. Will have to see IF a clinic anywhere nr you - very rare to find in hospitals, Bath, yes, but elsewhere ?

Nuclear scintagraphy will show up inflammation - I lit up like a C'mas tree. But requires a shot of 'nuck'...! Otherwise MRI coronal etc etc.

Here's a snippet for you, unable to access full paper via the link but the full paper 'may' be available via EULAR -

http://www.nature.com/nrrheum/journal/v9/n8/full/nrrheum.2013.83.html?WT.ec_id=NRRHEUM-201308

Opinion: Perspectives on imaging in axial spondyloarthritis

Xenofon Baraliakos & Jürgen Braun (both are 'leading light' members of EULAR)

Abstract
"The diagnosis of axial spondyloarthritis (axSpA) is based on detection of characteristic inflammatory or structural changes (or a combination of both) in the spine and sacroiliac joints. Imaging of the axial skeleton is, therefore, useful for the identification of these pathological changes. Both inflammation (best detected by MRI) and bone formation (best visualized by conventional radiography) can predict the development of future structural changes. In addition, a high degree of spinal inflammation on MRI is predictive of a successful response to anti-TNF therapy. Emerging data indicate that the combination of acute and chronic changes on MRI has an important influence on progression of nonradiographic axSpA to ankylosing spondylitis. This Perspectives article provides an overview of the role of imaging in the diagnosis and management of axSpA, and also discusses open questions and future perspectives in this field."

Much the same paper, but of prior date, 2010 -

http://ard.bmj.com/content/70/Suppl_1/i97.abstract

Here's my search criteria, I used the title of the paper - so, several more links that might prove worth checking out - Perspectives on imaging in axial spondyloarthritis - EULAR
http://aolbroadband.search.aol.co.uk/aol...tis%20-%20EULAR

Interesting, but don't go getting hairless checking... Take care -

P.S. Here's a full EULAR paper, updates to recommendations various. Good one to have habdy to refer to :-
http://ard.bmj.com/content/70/6/896.long

thanks M

this AS is one hellava disease.....

off topic....I have been working really hard in preparation for my THR due soon. Sometimes I think the more I do the worse things become...Deena,my wife,says I am too hard on myself and do too much. I believe the key is finding a happy medium between not enough exercise and too much, it's so easy to step over the line...I wish I could learn to accept my condition and appreciate the things I CAN do rather than focus and despair on the things I can't do. Oh well.

just trying to come to terms with things folks

thanks
John

Hmmm.....just change the names in the scenario and that could well be many of us, John!

Some of us are very SLOW LEARNERS, it seems. and are our own worst enemies... (I speak from EXTENSIVE personal experience here! )

I am trying to learn to accept my situation, but remind myself that I don't do it willingly and it doesn't mean that I like it. Definitely "a work in progress" so far, but making baby steps.

The dose of irradiated marker that you have inside your body is not going to do any long (or short..)term harm. It is an isotope that decays rapidly.

These scans are also known in layman's terms as "Nuclear Bone Scan". They should be relatively widely available in bigger centres.

In a female with normal ESR and CRP and HLA B27 -ve, having scintigraphy done is probably one of the best ways to show a systemic inflammatory disorder (first scan a short while after the marker is injected - pools in inflamed areas) but more importantly for AS - it is THE BEST way to show an active bone remodelling process as the marker isotope is selectively 'taken up' by the bone cells that are involved in building new bone (late phase scan - usually about 4 hours after you've had it injected). (In between, you go shopping, or go out for lunch - or bring a really good book!)

This is the process at the heart of AS. It is what leads men to fuse and what leads women to have a major pain in the butt (and elsewhere) but often without fusing in many cases! Not well understood but maybe some hormonal protection afforded to women, which may explain why the disease seems to 'accelerate' in women when they go through menopause!

I know you can't push your sister more ATM, but maybe in a while she might be receptive to other suggestions for investigation if the *current regime* isn't helping! Has she had any response to anti-inflammatories? These can almost be used as a 'pharmacological probe' - if you get a good response, then there IS an inflammatory process going on.

Hi Salty,

Just found this excellent article and thought it might be a simple but useful tool to explain the "Spondyloarthropathy Umbrella" of related diseases to your sister.

http://www.rheumatology.org.uk/includes/documents/cm_docs/2012/r/recognisinginflammatorybackpain.pdf

Louise - That is a most useful study. Do put up the link in the spondy research forum, then it won't get lost, will be readily accessibl. Good one gal -