Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group NSAIDs or not?

Current recommended advice guidelines for rheumatologists is:

"In adults with active AS, strongly recommended continuous treatment with NSAIDs over no treament with NSAIDs"

Same guidelines make no mention of advising patient of potential links with diet or intestinal permeability. Which is although disappointing, I understand the reasoning, still not enough empirical evidence/research, and very tricky for a doc to try and prescribe diet in todays pill popping world.

So as a newly diagnosed AS patient, this puts me in a conundrum. There is evidence that NSAIDs do appear to slow the progression of AS, particularly in early stages, However, NSAIDs also cause damage to the gut lining, leading to increased Intestinal Permability. A theory exists that IP/Leaky is one of the underlying causes for AS, or at least it is the bottleneck that can be potentially fixed through a gut-based treatment approach.

So, go against doctors advice to not take NSAIDs (as they damage the gut, and want to take the unrecommended gut based approach) Vs taking the NSAIDs (which may slow progression, but in my eyes do not target the actual underlying problem. I am currently skipping the NSAIDs, but would be interested to hear some constructive discussion around this topic.

Sources:

Current Guidelines: http://www.rheumatology.org/Portals/0/Fi...Spondylitis.pdf

NSAIDs slow progression of AS:
http://www.medscape.com/viewarticle/771061

Due to various life stresses/demands, I rarely pop on here anymore these days; however, due to my experience I can't leave your NSAID Q unaddressed. See, I took rx'd NSAIDS for 20+ years. The upside is they did allow me to function well enough to remain actively engaged in life & raise our boys, albeit with limitations.

However, around the 15+ year mark I began to have rather significant stomach pains...which I ignored. Long story short- my gut became so damaged, not only did the NSAIDS quit working altogether, but I also developed multiple drug reactions and/or allergies & became unable to tolerate any pain meds at all - including Tylenol and pain patches as well as most antibiotics, without intestinal bleeding. I became unable to digest foods: everything I ate traveled straight through in about 45 min. I lost 30+ lbs in a space of a couple months. I was very sick, very malnourished, in severe pain & very nearly died. I seriously looked like someone in a 3rd World country who was starving. I had trouble thinking clearly and often struggled to put coherent sentences together.

Conventional treatments failed, so in desperation I went to an Integrative Med dr who put me on IV nutrition & LDN which slowed the downward spiral; eventually over a period of months of clean "eating" (mostly bone broths at the time) I ever so slowly began to improve.

Unfortunately, although my gut began to heal, my AS only worsened until I was significantly disabled with only a few joints unaffected and after more than 3 years of trying various alternative approaches (including the No Starch Diet) I finally caved in to Humira. At the time I was so very disabled & in such severe pain, it was taking my DH 5 hours each day just to get me dressed/showered/undressed, let alone help with other basic daily needs in addition to his full-time job. I was using crutches on "good days" & a wheelchair for everything else.

On the 4th day after my 1st Humira injection, by God's kind grace I put my crutches down & have never looked back. I have had to use a wheelchair at times for longer treks, and I still get fatigued fairly quickly. But I now have a completely different life on Humira. I'm able to do stairs, walk, care for all my own basic dressing/undressing tasks, pick stuff up off the floor, sit at the table to eat, lift my grands, drive myself places....basically I'm completely independent & (mostly) functional again.

Bottom line- I would never, ever recommend NSAIDS long-term to anyone on the planet. I'm not sure what my AS progression would have been like without them, but the 4-5 yr nightmare I endured is not something I would ever want anyone else to go through, let alone someone who already has AS to deal with. I've often wondered if I'd have known about the No/Low Starch Diet in the years ago before I had gut damage (dr who performed colonoscopy said my entire colon looked like ground hamburger) perhaps it would've been effective for me. Who knows? And there may come a day when my gut has healed enough that I won't need Humira. Time will tell.

AS can be quite the journey; if I had it to do all over again, I would def opt for going all out in trying dietary approaches first & foremost. If that was not effective, I would still never give up really healthy, clean, low-starch eating since it turns out there are many other health issues that can arise other than just AS & what we eat makes all the difference.

I hope you never, ever have to endure NSAID damage & sincerely hope you find non-destructive options that are effective for you. Wishing you all the best-

Amazing answer, just the kind of inspiration I was looking for. Really appreciate you taking the time to write that up for me.

Hello, jakc:

I would almost parrot happygramma's post--NSAIDs, however, damaged me much faster and within about four years I was unable to continue taking them regularly.

They certainly accelerated my AS, which was compounded by being vegetarian (not always good and natural stuff, but STARCHES!). This kind of drug can work very well, but should never be relied upon for long-term use.

I like the anti-tnfa drugs, but they do not address the cause of AS, whereas diet can do this, but the combination of the two has helped several of our members considerably.

HEALTH,
John

Nsaids caused me not to be able to urinate (Napraxen) didnt do nothing for the pain anyways.

For the last 3 yrs, I've taken Mobic 15mg/day. Three months ago (Sept), my labs revealed a creatinine that had crept to 1.19 (I'm a 58 y/o female with no history of kidney disease-other than some stones that meander about both kidneys, without passing). Back then, he said to stop the Mobic to see if the creatinine goes down.

After two weeks, I checked it myself (I'm a medical lab scientist/technologist) and it was down to 0.99, which is lower than it was 3 months previous (in June). And I was hurting a LOT more than usual. Called up the rheumy's office and said I'd like to start back on it since the numbers recovered nicely and I was hurting so much more. He said okay, but only when I needed it. Huh??

I tried taking it 5 days a week (work days), but after 2 weeks it went back to 0.99. So I laid off completely and took aspirin instead--occasionally. Last week, it was time for 3 month recheck--with my creatinine being 0.85. That was nice. However, in the 2 months without Mobic, my ESR went from 2 to 15 (still normal, but a level I haven't seen in a couple of years) and CRP went from <0.1 to 1.1 (again, a level I've not seen in a couple of years). Nothing else changed except these tests and the lack of Mobic.

For me, this indicates the Mobic was working well. I asked him if I could take it through the winter, then stop when the worst of the season is over (winter is my worst season for disease activity). He didn't say 'no', but he also didn't say 'yes'. I rarely go against a doctor's wishes, but this time I am rebelling. If something goes haywire, I will agree it's my own fault. I'll stop it 3 weeks before next office visit.

It's been very apparent to me once I got on a biologic that I need all three of my main arthritis meds--the Mobic, the Cimzia and the MTX. Any time I've had to stop one of them, control of symptoms has gone out the window. Sorry for the long-winded answer, but this is my experience with NSAIDs. They work. (no comment on leaky gut because I don't think it's an issue for me.)

I tried all the nsaid classes and either they didn't work or they worked but gave me gastritis and/or edema. So they were never a viable daily long term option for me, so in a way I'm lucky not to have to try to figure out the pros and cons, I can't take them daily long term due to the side effects.

However, 1-2 aleve a day for a few days now and then, my body can tolerate. My joints do feel so much better on my aleve days. Normally I'll take an aleve for a migraine once or twice a month and so can reap the benefits to my joints at the same time.

I've been on Humira for 2.5 years. That is my miracle drug. Normally that's all I need (besides my supplements and LDN).

But its nice to know Aleve and methylprednisone are there for flares that Humira can not control alone.

But my Aleve use is sparse.

I have a gut component to my spondy and so I imagine NSAIDs probably wouldn't be good for me daily long term. But the gastritis and edema make it a moot point anyway.

I suspect if the biologics were not so costly, they would be the go-to option over nsaids. Seems to me the overall risk profile of the biologics is significantly lower than nsaids. I would be surprised if any rheumatologists would really disagree when pressed on the issue, given the current research on both classes of drugs.

I'm interested in the discussion of nsaids and intestinal permeability, so I don't want to sidetrack the conversation ... but just wondering if you've considered going straight to biologics.

Really interesting answer, thanks for sharing.
As a medical lab scientist, whats your general thoughts links between AS and leaky gut, klebsiella, diet?

Sorry for late response. I have, but...
In Australia you have to try two different types of NSAIDs for I think it is 4 months each, before going onto biologics.

I was only diagnosed 9 months back, only did a 1 week course of NSAIDs, before doing a lot of reading and realising that I wanted to try the diet approach (which is working, not 100% but enough to convince me it was the right choice).

Going back to the rehumy first week of Jan. He originally dismissed diet as too restrictive/not enough evidence, so not looking forward to telling him that I have gone this path. Was contemplating bending the truth and mentioning that I have been taking about 1-2 a week but upsets my stomach (which it did during that 1st week), but sensible half is saying to stay truthful. Thing is, the truth will unlikely get me the option to move to Biologics if I did want to explore that.