Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Interesting editorial: Predicting outcomes of AS

Hello all,

While reading some of the very interesting studies that have been discussed and linked to in the post "Remicade does not stop structural damamge in AS" in this forum (which I encourage anyone with an interest in the anti-TNF drugs to read), I came upon another article on AS that I found just as interesting and, IMO, deserving of its own thread.

Surprisingly, this one was actually offered as an editorial in the medical journal Rheumatology. I say surprisingly because I didn't really realize that medical journals included editorials and also because the article reads much like a standard report you'd typically find in one of these journals, as opposed to what I think of when I think of an editorial, which is a piece that is primarily based on opinion. Anyhow, that's just my journalism background showing through and none of that is really relevant to the discussion of this article, so onward we go.

The article, which was released online in May 2008 and appeared in print in the July 2008 issue, was called Predicting Outcome in Ankylosing Spondylitis. It appears that the article came about when its authors were grappling with the question duel questions of which AS patients should receive anti-TNF drugs; and, when should they receive them? The first question was based on both financial costs (Boooooo! If you need it, you should get it, cost be damned) and the potential high cost to a patient's overall health due to the drugs' extremely high toxicity (yay--in which I mean, yay, people are considering this as they look at the big picture of treating AS).

From that rather narrow starting point, the authors branched out into some much broader--and more important--issues, most of which revolve around the $64,000 question: How can doctors predicts how AS will affect a patient given the tools available to them now? That, of course, led to a whole bunch of smaller questions, including:

• Are the tools any better now than they were in past decades? .
  
• If not, why not, and if so, what are those new tools?
  
• What can be done to create better tools?
  
• What criteria should be used to decide how the disease affects patients?
  
• Are there specific things to watch for that are accurate indicators that a person's AS will become severe (or, conversely, remain mild)?
  

As you can probably guess from that list of questions, the article made for some rather fascinating--and at times, irritating--reading. I did take some hope out of the article in that it's the first time in a long time I can remember seeing these issues raised in a leading rheumatology journal, and because the authors seem to fully grasp the fact that much more needs to be done when it comes to both diagnosing AS and predicting how it will accect individual patients. We all have seen dramatic evidence here in KA that AS can run the very wide gamut from fairly mild to absolutely debilitating, but one thing we all agree on is that the disease is life-changing. Given that broad spectrum, there must be some indicators that will allow both doctor and patient to have some idea of the likely path AS is going to take, and it's time somebody discovered what those indicators are. The authors pretty much admit that the study of AS is largely neglected compared to RA and other more common rheumatic diseases and encourages others to heed their call that more must be done. Nice to hear somebody say that, isn't it?

Now, as you read the article, you'll realize pretty quickly it's far from perfect. Almost everyone here will recognize some of the standards AS 'lines" that AS kickers have come to view as myths, such as the disease "burning out" over time (my quote marks, not theirs--they don't say it quite that blatantly), It also supports the "male-centric" idea regarding who gets AS, but I will say this--I thought it was more fair when it came to that topic than just about any other report I've read in a medical journal. Mainly, it said that more men than women get AS, which is true, but it did not throw in the typical idiotic line like "it is very rare for women to even get AS," or " it remains unclear how many women diagnosed with AS actually have the disease"--you know, those totally moronic statements that we've read over and over and that so many docs seem to take at face value. Beyond that, I found it kind of interesting in that it discussed how what little data has been collected seems to indicate that women and men who get severe cases of AS experience rather different symptoms, and that based on that, doctors should watch for far different indicators in the diseases early stages depending if they are dealing with a male patient or a female. If more statistical data can be gathered that proves that severe AS manifests itself differently in men and women, then it absolutely would be important for doctors to develope different examination criteria and learn to monitor different indicators.

I'll give you one example that might make this clearer: The authors say that the data gathered indicates that men with severe AS are much more likely to experience severe ankylosis than women, whereas women are more likley to experience severe uveitis and peripheral disease involvement. Again, keep in mind that they are only talking about severe cases of the disease. When I read that, my first thought was that this actually sounded fairly close to what we've seen here in KA: the best I can recall, far more men in KA have had a spinal osteotomy than women; in fact, I honestly don't know if I can name one female KA member who has had that operation, which is performed to straighten out severe kyphosis. Don't get me wrong--I am NOT saying that there are no women here who have had the disease, I'm jsut saying that, anecdotally, I personally can't remember any woman having the disease. (And yes, I know I will be corrected VERY quickly if I'm wrong! ) Along those same lines, and again, this is just tapping into my own memory banks, it seems as if I read more from our female members when it comes to having to endure the nasty companions that travel with AS, such as Crohn's, IBD, colitis, fibro, sappho, etc. Uveitis is the only one that struck a sour note with me--it sure seems as if a whole bunch of men and women regularly battle that fun little condition. However, that could very well be because of the fact that I, myself, have had to battle near-constant bouts of iritis the past few years--maybe that is making it seem to me as if men and women experience iritis in equal amounts. I will be very anxious to hear how others feel about this aspect of the whole "male and female" question that has long been such a sticking point in the diagnosis and treatment of AS. Do you agree with me that this article at least seemed to be approaching this very important issue from some of the right angles by trying to determine if there are specific, yet different, indicators that can be used to predict disease severity in men and women? Or, did it just sound like more of the same old garbage to you? I especially want to hear if anyone has the latter opinion, because if it turns out that you do, then I will need to reread the article to see if I am way offbase in my initial interpretation.

Anyhow, I don't want to inject too much more of my own opinions here yet, as I want people to read this and draw their own conclusions. Rest assured that I'll have a couple more items to weigh in on once this has been up a while (shocking, I know), but I think I'll just throw it out there for now.

Brad

the authors branched out into some much broader--and more important--issues, most of which revolve around the $64,000 question

Quite. Rheumatology is published here in the UK and doctors in our health system can only prescribe $64,000 TNF blockers if national guidelines allow. Before being allowed to do so they are probably being asked some searching questions which they have never bothered themselves much about before. My own hope is that they might even start taking a greater interest in the basic science of AS- which might eventually save wasting a lot of $64,000.

Hiya,

I enjoyed reading your post.

I also get very irritated with this classical idea of AS and other diseases. I was encouraged to read that detailed differences in RA and AS could be described.

Another point is that ankylosis does not seem to be determined by disease activity.


Dave

Brad this was a very interesting read and it confirmed much that, I think, we've all suspected or intuited through our own experiences in living with AS. With regard to AS and women:

A recent study by Lee et al. [33], which examined the differences between the genders in terms of severity of AS concluded that in patients with long-standing disease, men tend to have more severe radiographic spinal changes while women had more peripheral joint arthritis but there was no difference in functional disability as measured by BASFI and the HAQ-S [34] between them. Although women had less severe radiological involvement of the thoracic and lumbar spine as evidenced by lower Bath Ankylosing Spondylitis Radiology Index (BASRI) scores [35], when adjustment was made for radiographic spinal damage, they were found to have reported worse functional outcomes than men at any given level of radiographic damage.

I have long thought that AS progresses differently in women than in men, but that this does not reflect on disease severity between the two. As you did, I have noticed that women do not seem to get the severe kyphosis that men do (not as frequently anyway). That does not mean, however, that our disease severity is less than that of men. We respond differently to the effects of the disease, which makes it too easy for less educated doctors to think we do not get it as severely. This report would seem to support that.

I was very pleased to see the reference to the fact that RA gets much more attention than AS. Perhaps, going forward, we will stop being RA's poor cousin and start being treated as equals in the research world. ... Well, a girl can wish, right?

Warm hugs,

Thanks Kat, the way you summarized the men/women section of the report included a couple points that I intended to include in my post but simply forgot to as I got lost in the post about midway through it. I still rescued it to my satisfaction and I was happy with the way it turned out, but the important point about how, despite the differences men and women experience when it comes to disease activity, they still experience about the same level of disability/loss of function was inadvertently skipped in my post, making your post an important supplement to the original one I wrote. Good job of reading my mind from that far away! Although, be careful, that's not sometining you want to do too often!

Good post Kat.

Brad

I actually liked this article. I think that they addressed the issue of gender fairly well. In truth, it is a factor. I don't think it's a factor as is commonly believed in the medical world, but hormones have a huge effect on the body.

I would like to have seen some more specifics about their criteria. This probably categorized as an editorial in the science field because they used words like "early onset" instead of giving specific ages each time. It's not really measurable. They mentioned juvenile by >16, but I couldn't tell if that's what they meant each time. This is only an example, you can find these types of references scattered throughout the article.

I would say that this could be a good article to print out and shove in the face of a few doctors. I am fortunate to have a brilliant Rheumy. He isn't warm and fuzzy, but I am confident that he has a good idea about my symptoms and is open minded to new information. He is also a professor at a local medical school though, so he has access to the up and coming.

The authors repeatedly speak about how AS has been basically cheated and should get more attention and research. I'm glad there's just one more article out there. The more questions people ask, the closer we come to making discoveries.

I'm glad I read this. I will be passing it on to my family.

Aly

Hey there Brad,

Very interesting article. I don't know the technical name of the spinal surgery I just had in July, but I was severely hunched over and it involved fusion of my cervical/neck spine. Since minorities are not considered in these studies, it makes me wonder if any of this relevant to me at all...I am often a bit aloof to many articles as my profile greatly differs from those sampled. Anyhoo, thanks for the article and interesting posts... and keep 'em coming!

Take care til next time,
Your Neighbor Bern

With all that is written and tested and compared with. I wonder if sometime there will be the medicene for those that catch and are aware of AS at an early age.
I think it is too late for me now, but I pray that something can be done for the younger set.
At age 75 I thank God that I learned right after I was diagnosed at age 52 that I had the HLA-B27 gene and there was no cure. And I did what I was told. As of today I have never taken any injections or any expensive meds. Don't even know what TNF stands for. I am fused straight on my own. I am pain free except I guess the side effects of AS and inflamation on the bone I have some gum issues. But I am able to fuction very well except for turning my head.

AS is rarely heard of, but with new technology and new drugs maybe more can be done
before some have to go to wheel chairs etc and spend al of their money and are no better.

How does one say they don't have a Rhumy. My first one said no cure. The second one sat back in his chair with his feet on his desk and told me. He could only prescribe meds. I took it on my own from there and it was one of the best things I did for AS.

I want to wish you all the very best.
Doreen

I thought of you, actually, as I read the article. You are one of the exceptions to the 'no kyphosis in women' rule and I was hoping you would see this.

I wonder if it's that minorities are not considered for these studies, or if it's that it's believed minorities don't get AS as frequently and, so, are forgotten. Kind of like the whole 'women don't get AS' crap that has made it so difficult for women to get diagnosed. Let alone getting research done on the effects of AS in women.

I wonder also if your exception in the kyphosis area could be part of you being an 'exception' (if that's the right word) in that you are a minority that is generally low in the AS numbers as well. As if, the one influenced the other???? I'm grappling with a new thought here, so please excuse me if it's not worded well.

Warm hugs,

Kat, there is NO 'no kyphosis rule' for women with AS.

That paints an inaccurate picture imo, not unlike the old myth saying women don't get AS. We have had other females here severely affected also (3 more I can think of off the top of my head) and you have met one of them with me and Dan, a few years back. Some women, and men too, fuse straight rather than bent and thus may not have to undergo a spinal osteotomy but that doesn't mean they aren't severely restricted, fully fused and prone to fracture etc.

I believe there is a subset of women that have very aggressive disease... perhaps it's a combo of all the 'right' genetics ... somewhere around 20% ? of females, if I'm remembering correctly. I'll try to find the article. I can only speculate that many women who in decades past went undiagnosed (and we know there were many!) were said/or dismissed as having a dowager's hump, rather than AS kyphosis.

hugs,
mig