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

I had the running out of steam NSAID problem for many years. Sometime the length of time would vary. Sometimes, I couldn't take some at all. So far, the Mobic has been working for at least 5 years. I am sorta holding my breath, hoping that it keep up the good job. I think that there are so many ways that things with AS can change over time. What works today might not next year and what doesn't work now might work later on. We are all weird. It's the AS monster that is behind it all.
Donna

We are all weird, yes, and I blame it on the AS monster too!

I hope that the mobic will keep working for you, Donna!
mig

Hey I'm not weird just a weird shape.


Kevin

habib, aloha

one thing we know for sure is that Nsaids do NOT stop disease progression and may actually make the spondy monster more powerful...they are a symptomatic treatment.

aTNF biologicals hold out the possibility of stopping disease progression and better symptomatic relief as well. Humira is not the only one, both enbrel and remicade are older, more patients have had experience (and lived to tell of the wonders)of both.\\

NOTHING works for everyone...it is a crap shoot; you find the one that works for you.

this is not a yes/no; one-zero; on/off world we live in.

good luck

We are so lucky to be living now, when there are so many meds to try. And there are so many more coming in the future. Just think how life was back in time before any of the drugs we take were developed. I thank God that I live now.
Donna

Welcome, Habib!

You'll find as you look around the forums that there are 7,477 registered members, therefore there are 7,477 different ways AS presents itself medically to physicians, 7,477 ways AS is experienced, and 7,477 ways AS is treated. We're not all the same model car stamped off the same assembly line, we're singularly unique beings.

Take what you read here with a grain of salt always. You and your health provider should work hand in hand discovering what works for you personally, and sometimes we go through several treatment modalities before finding the "right" one for us at this particular time.

Regard anyone who claims to have a "cure" as a snake-oil salesman; if there was a real cure it would be worldwide front page news.

In spite of all our diversity here, we have so much in common, especially our abilities to stand strong in the midst of pain that would render most people into a quivering immobile blob. We're able to understand one another in ways people without AS can't imagine.

Once again, welcome!

John

My rheumie disagrees and if you have access to the SAA website's members area you can listen to him on the site's webinar listing. It was the last webinar completed given by Dr. John Reveille. He states that the only evidence the AS community has of anything halting or slowing the fusion process is NSAID therapy. He has all his patients on NSAID's if they are able to take them.

Hi there, actually, to my knowledge anyway, the only meds capable of halting or slowing disease progression are DMARDS/biologics. And even biologics are being found to really only slow it. Nothing halts it altogether. NSAIDS do not. I would hazzard that this doctor made this comment before biologics were close to becoming mainstream???

Just a guess, anyway.

Hugs,

Hey Kat, I believe this is the study being referred to:

Wanders, A., Heijde, D. v. d., Landewé, R., Béhier, J.-M., Calin, A., Olivieri, I., Zeidler, H. and Dougados, M. (2005), Nonsteroidal antiinflammatory drugs reduce radiographic progression in patients with ankylosing spondylitis: A randomized clinical trial. Arthritis & Rheumatism, 52: 1756–1765. doi: 10.1002/art.21054

NSAIDS reduce radiographic progression in AS: A randomized clinical trial

"Conclusion
A strategy of continuous use of NSAIDs reduces radiographic progression in symptomatic patients with AS, without increasing toxicity substantially."

I always like to read these sorts of studies for myself. It may be important to note what was not being compared in this trial - the natural progression of AS without any treatment at all. Mind you, it may have been difficult to find 100 AS patients willing to take no meds for 2 full years. Still, AS is a chronic 'progressive' disease that does progress in the absence of treatment, as most of us know only too well.

Definitely, 'slowing' and 'halting' are two entirely different things.

Cheers!
mig

That's interesting John. Too heavy on the fruit and veg? (I know it seems counterintuitive to those not in the know, but my crohn's first came on after a zealous attempt for me to have my 5 or more a day. When I have a flare, it's bland bland bland starchy things, the only thing that's tolerated).

Interested to hear your thoughts, as I keep wondering if I should give LSD/NSD a try...

J