Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group CONFUSED

Hi, xroxer:

I take some offense at Your condescending "amateur scientists" reference, so prefer to disabuse You of some odd notions You seem to be encumbered by:

In my working career (non-medical), I was not a scientist but an engineer. I had three scientists working for me and in fact was remunerated by my company at an annual rate thankfully well in excess of that which is typical; they elected to rely upon my observational prowess for enough years. If You are interested, I joined a company called Linear Technology (symbol LLTC) in 1983.

With several others, I initiated the use SPC within our company and am otherwise familiar enough with the scientific method to evaluate papers even within other disciplines.

So if You want to discuss something specific please feel free to do so, but unless You are ready to evaluate the evidence for Yourself, You really do not have any substantial claim, especially when (IMHO) You suggest finding "peer-reviewed studies demonstrating solid evidence," which can be done on both sides of this very issue, but the idea of FUNDED studies is to PROMOTE the use of drugs.

Therefore, I hope You will be a little more respectful and especially not refer to anecdotal experiences as "theories."

Thank You,
John

I can't answer your question directly, but will share an interesting comment that my gastroenterologist made to me.

When he found inflammation and "crohn's like ulcers" in my ileum, I asked him, what else besides spondyloarthropathy would cause that and he said, "nsaids".

Since i hadn't taken nsaids for years and years (due to the side effects I get from them), we knew the inflammation and "crohn's like ulcers" was due to the spondy, but I thought it interesting that he said nsaids could do that too.

and then after years of GI issues, i developed the joint (and other) issues.

So, I don't know, but thought the idea that nsaids could do to me what spondy has done to me was interesting.

since i get gastritis and edema or other side effects from nsaids and cox2 inhibitors, its a mute point for me...i simply couldn't take them long term, even if i wanted to....i do take aleve for a few days when my SI or neck is really bad....just glad that for me, a biologic (Humira) works really well without side effects.

Dragonslayer,

Sorry you took offence. Your credentials really don't mean much of anything so I'm not sure why you posted them? For reference, I actually am a scientist (photoactive materials) and I would never use anecdotal evidence to TEACH a conclusion???

To me, this is what you did. Instead of presenting your ideas as a theory or opinion you present it as irrefutable fact. Every forum has them, medical or not.

A slight changing of your wording would drastically improve my opinion of you. Phrases like "While not proven, IMO......." are your friend.

Anecdotal

- Not necessarily true or reliable, based on personal accounts rather than facts or research.
- Based on or consisting of reports or observations of usually unscientific observers
- Anecdotal evidence is considered the least certain type of scientific information. It is the opposite of scientific evidence. Researchers may use anecdotal evidence for suggesting new hypotheses, but never as validating evidence.

So isn't forming a possible conclusion using anecdotal evidence also called a THEORY?

Now, if you what you state has actual evidence behind it, then post the links. Like I said, I would love to read it. I've read Haroon's small cohort studies on nsaid and tnfi acting as dmards. Not proof, but enough to study further IMO. The one showing nsaid+tnfi caught my eye. I hope they do the proper research to confirm it.

Are there actual studies showing NSAIDs do the exact opposite and worsen AS?

Celebrex never helped me at all. Vioxx was a miracle drug for me, until they pulled it, if I could get it I would still be taking it. I started taking a product that was supposed to be all natural. I worked great, it worked so good that I knew it couldnt be true, that it was "all natural herbal products" the FDA tested it and pulled the product. It had a steroid, muscle relaxer, and and nsaid in it.

xroxer:

The point is that I claim to be neither a scientist nor an amateur; my opinions are MY OPINIONS and based upon my own experience. I do not offer these as proof of anything or the basis of any theory.

everyone should draw their own conclusions, based upon their own research; all I can offer are my own "opinions."

Is it a "theory" that NSAIDs increase gut permeability?

Yet shoddy science is accepted enough to make NSAIDs "look" like DMARDs (they are, but in the wrong direction I suppose). So there is a REFERENCE and the conclusion the paper wants to reach is the OPPOSITE of their results. So, as a scientist, YOU can take apart their study just as well (if not better) as myself.

Is it a "theory" that a bacterium residing in every human intestinal tract is responsible for AS?

Look at the column on the left and review the "AS and RA Papers," for example.

It does not take a scientist to put these two pieces together and arrive at the most logical conclusion.

What I presume to TEACH is my way out of AS; it is not a simple process and I do not claim credit for the explanations that I have had to accept in order to shake this disease. 15 years and counting, Thank You very much!

You are correct; formation of a "theory" is really just semantics, but I do not and did not have time for the rigors of a scientific theory: A theory must be properly tested and competing theories proposed to explain the same observations. I just do not care about this because the answers were provided by Professor Ebringer, et al: He said AS was caused by a gut germ we can control through diet and my results indicated the assertion about diet was correct (whatever the REAL explanation)/He said that AS was caused by a GERM and I tested this claim by taking antibiotics against that germ and the results were dramatic (whether AS is caused by THAT germ or another, I believe the germ "theory.")

By now I do not care what the explanations are, I only seek RESULTS and I do not need them myself anymore, but over 200 fellow spondys agree with me directly and many others, also.

The "science" done to date has been terribly flawed; You can look the competing papers up for Yourself and find the fake ones or the well-meaning ones with faulty premise or DOE.

Before science either trickled down to the medical guilds or got around to something besides paralysis, I HAD to have the answers, and I got them. Willing to share them and TEACH what worked for ME and I have over 200 similar "anecdotes" in addition to my own. And I WELCOME my claims to be studied as if they were "theories;" I would love for that level of scrutiny to be applied. However, I truly believe that such studies have already been done and are suppressed because it would be a big mistake for the information to get out that the very drugs used to treat this illness actually make it worse!

I am willing to accept thoughtful criticism, but I very much resent the condescending tone used in Your original posting. Although I understand Your point, there are only so many caveats and disclaimers until it becomes a tome of tedium--and it is very unnecessary because this is an internet forum and inherent in this are canned phrases: BUYER BEWARE, YOU GET WHAT YOU PAY FOR, etc etc.

NSAIDs do have their place in pain management, and I harbor no ill will against the drug companies; they did not knowingly (at first) harm us and we voluntarily took their products. But to fund studies designed to now redeem NSAIDs is pure quackery and designed to get themselves and physicians off the meat hook.

I shall not explain this every single time I post about my experiences with NSAIDs, however! Some will believe it, others can find out for themselves: I have had several operations including a 20 hour osteotomy. IMHO it was great doctors fixing other doctors mistakes (and I take a major helping of personal responsibility in this, also which is appropriate since I wear the damage daily). That is my own attribution, not a "theory," but real experience and simple opinion.

Regards,
John

Dragonslayer,

Your response to the OP was out of line IMO and I called you on it. You state that NSAIDs accelerating AS is a "FACT" (your second sentence).

If it is a fact then provide proof other than your anecdotal experiences.

What if it is not a FACT like you say and it turns out that the small cohort NSAID studies (see below) are proven to be true?

Do you not see this as irresponsible?

http://ard.bmj.com/content/71/10/1593.full

http://www.blackwellpublishing.com/acrmeeting/abstract.asp?MeetingID=781&id=96043

These studies don't prove anything but rather suggest a possible benefit that should be studied further. Note they also describe the toxicity and dangers of NSAID usage.

I have seen many arguments about the diet, and NSAIDs over the years that I have been on here. I was initially a skeptic, but have found that it does help me. I do not go totally starch free, but I have found that if I avoid potatoes, and try to stick with whole grains that my pain levels are decreased. It does not hurt to try the diet to see if it helps you.

I do have a lot of respect for John, and regret not spending more time talking with him the time I meet him in Las Vegas. I wish we would do those AS Vegas parties again.

I'm sure we can all find papers to support either side of the debate, but here is one (and click on the links within the writeup for the journal articles) that does talk about how nsaids may contribute to leaky gut:

http://www.thedailybeast.com/articles/20...ut-disease.html

I found a number of abstracts on pubmed as well to support this argument, but the papers are mostly not free, so I didn't bother posting them.

Perhaps it depends on a person's disease; for example, if one has an inflammatory GI component to their disease. From what I've read (in rheumatology texts, etc), everyone with a spondyloarthropathy has inflammation in their ileum.

I don't know what I would do if nsaids worked well for me without any obvious side effects. Thus not being able to take any nsaid on a long term basis due to gastritis and edema has just simplified it for me.

I'd suggest, OP, to read both sides of the debate, be aware of your own symptoms, and try to make an informed decision after reading both sides of the issue.

Sue22,

Thanks for posting. The dangers of NSAIDs including damage to the gut lining is well known already. Even the studies suggesting possible DMARD effect of NSAIDs mention the possible dangers on long term NSAID use.

However, AFAIK there is not a single solitary study suggesting that NSAIDs will increase AS activity or progression. All the studies suggest the opposite. It is one sided as far as I can tell.

If there are studies then I'd like to read them. Hell, is there even an article theorizing this effect on AS?

A lot of functional medicine practitioners believe that leaky gut is necessary for autoimmune disease to occur (see Alessio Fasano's work). I came across this study of ankylosing spondylitis patients and it is fascinating. The study says that leaky gut does in fact precede AS. "Our study confirms that alternation of the gut wall occurs before the clinical manifestation of AS".

They split up their study into 3 groups. People with AS, healthy 1st degree relatives of people with AS, and a group of normal healthy individuals as the control. They found that both the patients with AS and their healthy relatives had statistically significant higher leaky gut than the normal control. 60-70% had leaky gut was 20% in the control.

This makes the Klebsiella argument more plausible since it seems you would need intestinal permeability so that the bacteria can enter the blood stream and trigger an autoimmune response.

This is empowering because a NSD diet helps in both repairing the leaky gut and diminishing the number of Klebsiella bacteria. However, it may not be enough for some people and they may need to take other supplements or necessary changes to eliminate leaky gut.

The study is called "Intestinal permeability in patients with ankylosing spondylitis and their healthy relatives"