Feedback on Test Results

I think what the Rheum might have meant is that biologics don’t work well in AS, specifically in preventing RADIOGRAPHIC progression of spinal fusion. This is what was thought ten years or so, (as I understand it as a non-medical observer - so @tntlamb might correct me).

I think since then, studies have been done that demonstrate Biologics do prevent radiographic progression, and also control non-fusion symptoms. The reason it wasn’t clear for so long in AS appears to be the slow rate of radiographic progression requiring really long studies. Certainly, as I understand it, there has never been evidence of conventional DMARDs being effective for radiographic progression, hence the original treatment was NSAIDs and exercise.

But now, the treatment protocol Sybil mentioned seems to be the one used.

That is correct multiple studies such as this one pretty much confirm that progression is stopped or slowed. The most significant difference was noted at six years of treatment.

Incidentally the DX of “ankylysing spondilitis” went away in 2016 and the disease wa classified into several categories (one of which includes PsA) and differentiate between Axial and Peripheral involvement. HLA B-27 isn’t even a discussion point anymore. Look at the pValues on the charts. they range from .44 - .58 or basically are insignificant

As far as I know, inflammation does show up on MRIs. On mine it was lit up (bright white ‘lights’ wherever joints were inflamed). I think it helps to have the contrast medium injected in order to get clearer pictures which show the inflammation.

The MRI will be done with contrast dye.

Before they inject the Dye make sure they do STIR sequence DEMAND stir sequences in fact. Inflammation does not easily show up on an MRI in the when looking for Axial SpA. Stir is the gold standard for AS diagnoses. Heres one of many articles explaining WHY

Been thinking … unfortunately quite a few rheumys seem to come up with out-of-date assertions about PsA and its treatment. That is my experience too. Over here in the UK, some areas of medicine seem to embrace the most recent research whereas others are like juggernauts - very slow to change course. Consequently it can be hard for patients to counter out-dated thinking. I notice on NHS information sites that the term AS is still used and testing for HLA B27 is still part of the diagnostic process.

However … if I had axial symptoms I would feel very confident in challenging the assertion that biologics don’t slow progression, simply because it does seem to be extremely out of step. If the NHS in the UK has recommended progression from NSAIDs to biologics for AS for some years, then I would say that this is likely to be a very well-recognised protocol worldwide and chances are that your rheumy’s colleagues would back you up, even a google search of creditable sites would back you up.

Yes I will definitely discuss the most recent studies on the matter if it becomes relevant.

We’re not at that stage yet as the diagnostic process is still ongoing.

I see that the original study didn’t cover a long enough time frame to see the positive results i.e. the most recent study covers 4 years.

In the course of my research I came across this presentation by Dr Weisman which I found quite interesting .

I didn’t have B27, but doc said that didn’t mean much.

@ktel, just watched the YouTube. It’s really interesting, thank you for posting that.