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

Hey, mig:

Well I am a bit skeptical. This study is an overview and amplification of previous experimental studies that did not meet proper scientific standards.

And I am going to apply the same standards to an "apparent" scientific study as people try to demand of our diet studies.

I regret very much that this group did not have any control group, so this fact totally RUINS their claims. And it was not double-blind, multi-centric, and false claims of randomization: These are the criteria that the anti-diet crowd demands of us, so I have to demand it of the pharmaceutical companies who are trying to remake the image of NSAIDs into DMARDs. I am sure this can be accomplished, but no amount of Hollywood PR can change FACTS. No administration can repeal certain laws (laws of physics, for example), despite their legislative prowess.

We have had this discussion on NSAIDs many times.

Nothing new and I'm still here hoping that a few people will not rediscover my own folly.

HEALTH,
John

I am skeptical of Mig's statement as well.

Specifically, where she earlier makes the claim: "We are all weird"

Strictly speaking, by definition, that would make us all normal

No, He specifically stated that there is no evidence that biologics slow or halt the progression of AS. Dr. Reveille is the leading research doctor in Houston for TASC. These guys are the one that together are locating the genes that are responsible for AS.

Hey John,

I am a bit skeptical too. It is unfortunate that there was no control group, I agree, although "ruins" seems a bit strong, imo.

I posted the link for those who may not have seen it -- and may want to read and reach their own conclusions. We know that Nsaids can be, and too often are, harsh on the digestive tract. And regardless of everything else, I can't imagine that a leaky gut would be a good thing, even though I am one of the approx. 30-40% of ASers that hasn't experienced stomach or IBS woes.

The one thing that I've recognised, in my own case, was that my AS progressed quickly, before using nsaids! In the 2 years leading up to my diagnosis, my disease trajectory and symptoms were heading up up UP. I was easily diagnosed by the damage showing on my SI xrays - before being put on my first nsaid - and this despite being female.

Whether or not nsaid treatment hastened my progression, I will never know. What I do know is that I continued to get worse and that nsaids did not appear to slow the process one iota. Maybe I would have been fused by now without them, or, maybe I would have faired a little better. All I do know, is that my sacroiliac joints were quite determined to fuse long before I met a rheumatologist. The other thing I know is that I could usually walk when I was taking them and had a terrible time when I missed a dose.

My own conclusions are that without treatment, my AS will progress. It has and it will. I found nsaids are useful for *symptomatic* relief (to an extent), but as for preventing damage, I had no such luck. Remicade has been fantastic for symptomatic relief, and with luck it may help to slow my progression. Anything that helps reduce inflammation enough that it allows me to stand up straight, is preferable to that nasty force of being pushed forward everyday.

I am not in the anti-anybody crowd but in the pro-ASkickers crowd!, which I know that You know John.
Health, back at ya!
mig

Oh sure, surround me in skeptics! lol

You know that old saying, don't you Dow? "All the world's strange but thee and me ........... " ?

Strutsy and John - interesting comment about NSD flaring ulcerative colitis. I find I'm better on a LSD or NSD, but my gut problems (non-specified) also don't allow me to go the whole loads of raw salad and veg route - I have to have everything very well cooked to not flare my gut. Of course with a lot of the foods that means that they can become a bit more starchy. Seems the way for me that in balancing the digestibility of the cooked stuff against the starch content of it, I'm better off LSD than completely NSD.

I'm also trying to follow the whole thinking of benefits or not of NSAIDs with a great deal of difficulty. I still can't quite get whether they help in the long term. I do understand that they can badly affect your gut, but that isn't an issue for me at the moment taking a slow release diclofenac. I can't stop taking it, as I flare really badly. Does that mean that it isn't having a long term effect? Or is the long term effect just in the holding off of too much inflammation? It doesn't seem to totally stop inflammation either (subjective assessment based on the fact that bits still benefit from icing regularly).

regarding NSAID&NSD&IBD:

I was 2 years on NSAID - while on them my UC got worse. While on thenm my back was better, but those 2 years were a downward spiral - i needed to go for more powerfull pils with less results week by week...clearly they affected my UC condition and therefore my AS gotten worse.

Regarding NSD: i first attempt the diet first 5-6 months this year, relying heavily on fruits - fist 2 months i had verry good results on my AS then my UC got worse.

I switched - adviced on my GI - to a verry high starch diet - potatoes, pasta, bread, meat - for 2 weeks i felt better, then again my AS got worse, then i started having a lot of gas, fermenting issues, and my UC worsened - no more dihareea - but a lot of rectal pain, disconfort, gas - for me far worse than the dihareea period.

Then i got back on NSD since august - but avoiding fruits - except white grapes- sugar and honey - using Stevia as sweetener, but with caution. I eat mostly vegetables&meat&hard cheese like ceddar. I've read that fructose is higly inflamatory, and also i paid a lot of attention on omega6 / omega 3 ratio in my diet.

Things are improoving on both sides.

Yes, probably too much fruit and veg. Fruit, veg, meat and eggs is all I was eating. I wouldn't mind finding a no/low starch alternative just to give this a try, but I'm afraid to experiment. It seems that a well balanced diet is the best for my UC...at least I feel good.

Ah yes, I looked up that quote, and apparently the origins are from a fox complaining about all of the other animals in the barnyard being crazy but him!

That fox later went on to found the Fox News Network

When my UC is in remission, I have been able to eat anything I want. Whenever I have a flare, its low fiber, and when in a really bad flare, its liquids only. Back about 13-14 years ago I was really bad and spent my time curled up in a ball on the sofa, living on Ultram and Mexican rice milk. I learned to make it my self. It contained rice, water, sugar, vanilla and a little cinnamon. It was not nutritious, but it helped keep me out of the bathroom and out of pain.

I took aspirin followed by just about all of the NSAIDS for forty years before I had my first UC flare. While most people with IBD develop it in their teens and twenties, there is a second group of people who don't start having symptoms until their 50's and 60's. I was in that second group.
Donna